POZ Community Forums

Main Forums => Living With HIV => Topic started by: PozJeepGuy on May 09, 2011, 03:40:51 am

Title: having thoughts of stopping meds
Post by: PozJeepGuy on May 09, 2011, 03:40:51 am
For the last month i have started to think about stopping my meds for a few reasons.  When I first got the news and after very little research I made my mind up fast to start meds.  Now after meeting more positive people, learning more, and over all experience I'm doubting my decision.  I always thought diagnose=meds.  I now hear people who have been positive for years no decades saying they never even started meds yet.  Not to mention the fact that everytime I open those damn bottles its just that reminder, but then I worry somewhat on a few levels on quitting.  One being the whole resistant thing, another being the fear of catching something and just getting sick. 

I read someones post when I asked about starting meds and I can remember it clear as day.  "once you start its taking that pill for the rest of your life."  Now looking back I really wish I would have taken that more into consideration.  I see new people coming to the forums and asking about meds.... As someone just starting this process, stop and do some real soul searching on this one.  Its not as easy as it may appear. 

I am currently on a drug study which ends in 6 month es.  So I know I won't do anything till then, but I'm wondering if anyone was on meds then quit and how are things going.  I know each experience is different but I want to hear what you all think. 

yes and I know to discuss this with the doctor.  I didn't listen before but ears and eyes are open to your thoughts
Title: Re: having thoughts of stopping meds
Post by: mecch on May 09, 2011, 04:40:48 am
You explain some of your fears about what might happen if you stop.

You don't explain the reasons why you want to stop.  Care to share?
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 09, 2011, 04:51:56 am
i feel taking the pills says I'm sick, when in fact my number are solid.  I have been thinking about the other side of the debate which is why not let you body work it magic.  Maybe I shouldn't underestimate what it can do.  I feel alot of the feeling (nausea,Numbers from time to time, etc) are more associated with the meds then the bug. just to start
Title: Re: having thoughts of stopping meds
Post by: J.R.E. on May 09, 2011, 05:26:46 am
Hey Jake,

Your numbers are solid, because you are on medication.  Since you have started on medication, you have remained undetectable. Your numbers are fantastic, once again, that's because of the medication. This is the ultimate goal of HIV medications, to achieve an undetectable viral load.

As far as "letting the body work it's magic" ,  It ain't gonna happen. HIV, ( unless you were some sort of elite controller),  continues to replicate, without the intervention of HIV medication.


You stated "I feel the pills says I'm sick. You actually became sick (whether you want to believe that or not, the day you became infected with this virus)


Continue on your medication, and have some further discussions, with you doctor, on the next phase after this study ends.  I would also mention to your doctor these thoughts your having , about stopping medications. I feel it's important for the doctor to understand what's going on in your head.

 I understand where you coming from, but these thoughts, are not healthy thoughts. I repeat once again, without medication, your viral load will go up, your t-cell and percentage will go down, and those very solid and good numbers you have, won't be there.

Just my thoughts...


Hang in there----Ray
Title: Re: having thoughts of stopping meds
Post by: Matty the Damned on May 09, 2011, 05:34:44 am
I stopped taking medications back at the end of 2004. For a while things were OK.

And then in mid 2006 things my numbers started to decline. By the end of 2006 I had almost no CD4 cells and a viral load that was above the top limit of the test.

It happened very quickly.

And I was very ill. It was tiresome. I've never been the same since.

I was told to restart meds, which I did, and that was tiresome too. But it worked.

Now your mileage may vary. You may be one of the lucky few who can potter along for years sans meds and be fine.

More likely you will not be. Letting your immune system get arse raped by the virus is a Bad Idea. You'll never get it back quite like it was before. As anyone who has done it will tell you, getting a wopping dose of AIDS changes you in eerie fundamental ways.

You're forever altered.

If that doesn't help you decide, consider the case of our very own Emery. (http://forums.poz.com/index.php?topic=36980.0)

MtD
Title: Re: having thoughts of stopping meds
Post by: sam66 on May 09, 2011, 06:08:04 am
     Thanks for that post about Etay;   Matty ,  I did not realise he had passed away,  I remember reading his posts and how all you guys (LTS) tried to persuade him to change his ways .

  very sad.

     theres a perfect example of how you can live apparently normally without meds with HIV, but it will strike you down
    like a bolt of lightning out of the blue.
Title: Re: having thoughts of stopping meds
Post by: Ann on May 09, 2011, 08:16:32 am
     

     theres a perfect example of how you can live apparently normally without meds with HIV, but it will strike you down
    like a bolt of lightning out of the blue.


It's not going to "strike you down like a lightening bolt out of the blue" if you are being regularly monitored and go on meds when your numbers say it's time. Etay died because he refused to believe that it was time for meds when he only had a handful of CD4 cells.

I've been poz for fourteen years now and I'm still not on meds. I may be soon, and we're watching my numbers closely. But I've had years without meds because my doctor and I refused to jump on the med wagon when I was first diagnosed. And I'm doing well.

Not everyone can go fourteen years, I know. But people who start meds when newly diagnosed and especially newly infected and diagnosed will never know how long they might have had before they actually needed meds.

I've read mixed reports on whether or not someone who started with good numbers or early in infection** can safely go off meds. I've heard some reports that it's not a good idea as your VL will skyrocket and your CD4s plummet. (I would imagine maybe your body forgets how to deal with hiv on its own while you're on meds - but that's just conjecture on my part.)

** Let's be clear here, I'm talking about people who start meds during acute infection (such as the OP) or people who start when in a more settled infection and have good numbers. I am NOT talking about someone who started with poor numbers where ARVs were advised in accordance with clinical guidelines.

On the other hand, I have heard reports - some of them first-hand - where women who went on ARVs solely because of pregnancy (and not because their numbers indicated the need) were able to go off meds after delivery and had no problem in maintaining good numbers.

If my conjecture above has any basis in fact, it may be that women who initiate ARVs during pregnancy and cease ARVs after delivery have only been on the ARVs six to eight months and maybe this isn't long enough for the body to "forget" how to deal with hiv.

My advice to the OP is first of all, talk this over with your doctor. Do not go off meds without his or her supervision - and note I say supervision, not approval. Your doctor's supervision will prevent you from developing resistance. If you do decide to go off meds, make sure you're closely monitored, particularly in the first few months. Do not ever go more than three months without having labs done while not on meds.

Ultimately, it's up to you.



edited for clarity
Title: Re: having thoughts of stopping meds
Post by: Matty the Damned on May 09, 2011, 08:29:46 am
     Thanks for that post about Etay;   Matty ,  I did not realise he had passed away,  I remember reading his posts and how all you guys (LTS) tried to persuade him to change his ways .

  very sad.

     theres a perfect example of how you can live apparently normally without meds with HIV, but it will strike you down
    like a bolt of lightning out of the blue.

Etay was not struck down by a "bolt of lightning out of the blue". He was warned but he knew better than the rest of us.

He died.

Now I'm not suggest that the OP is in the same boat, but Emery's case is instructive.

My case is instructive.

The OP asked for experiences of ceasing treatment and I shared mine.

HIV is nothing to be trifled with. There is plenty of scope to test out one's limits and try various things. But folks should not be deceived.

This is a fatal disease when not treated.

The consequences of tarrying unduly when it comes to treatment are very serious.

Think carefully. Consult wisely. Do not pretend to yourself that you're cleverer than you really are.

You may not live to regret it.

MtD
Title: Re: having thoughts of stopping meds
Post by: sam66 on May 09, 2011, 08:50:36 am

 Yes Ann, Matty
                        I should have said it will strike you down, when when your cd4's and cd%  get near the zero mark.  ofcourse you should be monitored when you get near the low end, if you are not on meds by then, it will strike you down.
Title: Re: having thoughts of stopping meds
Post by: wolfter on May 09, 2011, 09:06:28 am
Having survived almost a decade without the option of meds, I have a difficult time understanding the dynamics of this debate.  Perhaps it's the memories of the beautiful faces of so many friends dying and knowing there wasn't an option.  I wish you the best with your decision.  

I remained strong and healthy for a long time because of the treatments that became available through the years and had been undetectable for a long time.  I had some sort of psychological collapse when Bill died.  I suffered severe depression and stopped taking care of myself including stopping my meds.  I don't know if I've ever shared this before because it's my ignorance that caused me to get so sick and I'm embarrassed about that fact.  Within a year, I only had a handfull of tcells and a vl of 6.7 Mil.  

Anecdotal doesn't equate  to scientific proof, but this was my reality.  Good luck my friend.

Greg
Title: Re: having thoughts of stopping meds
Post by: newt on May 09, 2011, 09:16:28 am
Hello

The 10 years before meds thing is a myth. About 1 in 5 people will need treatment 1-2 years after infection (erm, infection not  diagnosis). 1 in 2 will need to start treatment after 2-10 years, on average after 5 years. About 1 in 4 can stay well  without treatment for longer. There is no way to say where in this distribution you will fall.

When you stop treatment your CD4 count falls rapidly to the level it was it before starting meds. Your CD4 count was high before you started meds, so this won't be a problem. Also, your viral load will tend to return to its pre-treatment level.

The other caution, which I am sure your doc will emphasise, is the risks connected with the virus flaring up again. In the SMART study, which looked at treatment breaks, people who went off meds did rather badly on this score (about 2 x as bad as people who stuck with them). But it has to be said most of the people in this study had much lower CD4 counts and higher pre-treatment viral loads than yours, among other things that were different.

If you started treatment within about 6 months of acquiring the virus then I think you are in a whole different ballgame regarding stopping. This is in effect a short course of early treatment and prob neither here nor there long term, indeed, it is possibly beneficial to have done this if you do stop.

On the other hand, why kick a good thing in a small bottle or two? The meds have done wonders for your CD4 count and hammered your virus into the ground.

So then, is the problem the HIV in your thoughts and feelings, rather than what's left of it in your body? Do you need to not be on meds to feel less AIDSy/more normal and get your head round the experience so far (or even just, for a bit, escape it and the stuff that led up to it << fair enough to want this), or is there another way to work this through?

- matt
Title: Re: having thoughts of stopping meds
Post by: SunnyFlorida on May 09, 2011, 09:22:59 am
I'm in no position to be dispensing meds-related advice since I'm not poz, so I have no experience to draw from. However, I can say this... I agree with Ann wholeheartedly. Talk to your doctor, and if you absolutely feel like you should get off the meds, do so with supervision as she recommended. The last thing you want is your HIV to develop resistance to the meds you're taking, forcing you to take other ones, those that could possibly do more harm to your body.

i feel taking the pills says I'm sick, when in fact my number are solid.  I have been thinking about the other side of the debate which is why not let you body work it magic.  Maybe I shouldn't underestimate what it can do.  I feel alot of the feeling (nausea,Numbers from time to time, etc) are more associated with the meds then the bug. just to start

As somebody who has experience in psychology, I do recommend that you seek some sort of psychological help. Perhaps through your local ASO or your doctor. You mentioned that opening the pills says you're sick. That's a psychological barrier you need to deal with as soon as possible. All I want is for you to stay healthy, and should you ultimately decide to get off the meds, that will change. You may feel good for some time, but things will go downhill eventually. I don't want to see you go down the path that Etay did. Please, think long and hard before you make that decision. Think of yourself, your friends and loved ones. This is not to be taken lightly.
Title: Re: having thoughts of stopping meds
Post by: Ann on May 09, 2011, 09:37:28 am
You mentioned that opening the pills says you're sick. That's a psychological barrier you need to deal with as soon as possible.

Sunny's post made me realise I meant to say something about this earlier.

Jake, would you feel sick if you were taking vitamins? You're taking something to STOP you from getting sick. Try looking at it that way.
Title: Re: having thoughts of stopping meds
Post by: metekrop on May 09, 2011, 10:07:29 am
Yea, May be you can stop.  Your numbers are great.  CD count 1014 is very good number.  But you would definitely start again when your numbers are depleted to 50 or less and experiencing what death is looking like.   ;)
Title: Re: having thoughts of stopping meds
Post by: mikeyb39 on May 09, 2011, 10:23:33 am
hi all,
I didn't really have the choice to not start meds at my time of diagnosis since my CD'S were so low. I just come off of having shingles, doctor says more than likely due to immune reconstruction syndrome or something like that.  It was very painful and I'm going to do everything i can to keep OI'S for coming into my life.

As much as folks want to put HIV in the back of their minds, unfortunately this disease will happily remind you that its still around.  If taking this big pink pill every night serves as a reminder of what i have, then so be it.  I'm very thankful that at least i do have something to take at this point.  I know whats its like to have low CD4's, i was extremely tired all the time, i lost about 30 pounds, it was not a fun time.  I'm just now starting to go in the right direction since I've only been on meds for 5 months, but I'm excited about knowing where my numbers might be in the next month or so.  I'm finally starting to feel like I'm getting back to some type of normalcy

I know everyone has different opinions on when to start, i guess since I didn't really have a choice it was an easy decision for me.  I trust my doctor like a family member he has been dealing with HIV/AIDS from the beginning.  He assures me that having a High active viral load for years and years is doing more harm to your body even-though you may not feel it at the time.
Title: Re: having thoughts of stopping meds
Post by: newt on May 09, 2011, 10:31:31 am
I wish people would lay off the drop-and-die stuff. PozJeepGuy has a reasonable concern to my mind that he started meds straight after diagnosis more or less and was/is it necessary at this point? His CD4 count was well over 500 when he started, and guidelines-wise, this is a 50/50 call in the States and a no-treatment-yet call in Europe (at the moment).

- matt
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 09, 2011, 11:23:44 am
First thank you for the responses. I wouldn't do it without talking to my doctor. I am learning quick thow talking to my doctor is one thing and asking those who have dealt or are dealing with it it to be another thing. Its not something I'm taking lightly but if at some point I will have to (and I mean have to) take pills why not wait to that point. I am seeing a psychologist and we are discussing this as well. Like I said organially I didn't listen before and now I just wondering what the general con sistents is. But I keep coming back to what if I could go another 5 years without meds. Not deal with the side effects of meds. The one thing I'm not hearing is I stopped and.it messed everything up. I'm hearing or my precpetion is you will get worse but go back on meds and thing will be OK again.
Title: Re: having thoughts of stopping meds
Post by: David_CA on May 09, 2011, 11:30:20 am
Jeep,

Do you have an idea of when you might have been infected or when your last negative test was?  I'm curious as to how long you might have been positive before diagnosis.

I was one of those who had to start meds fairly quickly after diagnosis / infection.  Based on my last negative test, I may have been infected at the most 2.5 years before diagnosis.  I also had to start meds 9 months after diagnosis. 
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 09, 2011, 12:07:55 pm
January of 2010 I tested neg. September of 2010 positive. Doctor thinks I became positive October 2009 give or take a few months. That's another reason for thinking it would be OK to stop fir a few years as well
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 09, 2011, 12:35:05 pm
The meds have ... hammered your virus into the ground.

It is important to be careful about making this statement since it is not scientifically correct.
ARVs act on HIV in plasma *only*. They have absolutely no effect on HIV anywhere else in the body - in the Gut Mucosal Lining and lymph glands for example. It is why ARVs are not at all a 'cure' for HIV and they do not, at any time, clear the body of what is classed as HIV. Research continues on ways, if possible, of attacking HIV in all the other reservoirs in the human body. That's why stem cell research continues, which in certain complex and currently expensive ways, holds out the hope of clearing HIV.
GcMAF (Serum Gc protein (known as vitamin D3-binding protein) macrophage-activating factor) is another area of promising research.
Title: Re: having thoughts of stopping meds
Post by: drewm on May 09, 2011, 12:45:37 pm
Etay was not struck down by a "bolt of lightning out of the blue". He was warned but he knew better than the rest of us.

He died.

Now I'm not suggest that the OP is in the same boat, but Emery's case is instructive.

My case is instructive.

The OP asked for experiences of ceasing treatment and I shared mine.

HIV is nothing to be trifled with. There is plenty of scope to test out one's limits and try various things. But folks should not be deceived.

This is a fatal disease when not treated.

The consequences of tarrying unduly when it comes to treatment are very serious.

Think carefully. Consult wisely. Do not pretend to yourself that you're cleverer than you really are.

You may not live to regret it.

MtD

I'm with Matty on this if for no other reason than this bug is NOT to be trifled with. In the end, of course, it is the decision of the OP but meds turn back the clock on this disease. This bug will kill you if it ever gets the upper hand so I, personally, see no reason to ever give IT the chance.
Title: Re: having thoughts of stopping meds
Post by: Ann on May 09, 2011, 12:47:31 pm
Jake, things don't have to "get worse" before you go back on meds. As long as you're being regularly monitored, it shouldn't get to that point. You can start when your CD4 show a trend of staying between 350 and 500. You'll catch the trend with regular monitoring.
Title: Re: having thoughts of stopping meds
Post by: David_CA on May 09, 2011, 01:32:51 pm
It is important to be careful about making this statement since it is not scientifically correct.
ARVs act on HIV in plasma *only*. They have absolutely no effect on HIV anywhere else in the body - in the Gut Mucosal Lining and lymph glands for example. It is why ARVs are not at all a 'cure' for HIV and they do not, at any time, clear the body of what is classed as HIV. Research continues on ways, if possible, of attacking HIV in all the other reservoirs in the human body. That's why stem cell research continues, which in certain complex and currently expensive ways, holds out the hope of clearing HIV.
GcMAF (Serum Gc protein (known as vitamin D3-binding protein) macrophage-activating factor) is another area of promising research.
Didn't that Swiss study completely disagree that ARV's have no effect of HIV anywhere else in the body?  If it didn't, wouldn't their results have been different?  Here's one summary of the study I'm referring to:
http://www.aidsmap.com/Swiss-experts-say-individuals-with-undetectable-viral-load-and-no-STI-cannot-transmit-HIV-during-sex/page/1429357/ (http://www.aidsmap.com/Swiss-experts-say-individuals-with-undetectable-viral-load-and-no-STI-cannot-transmit-HIV-during-sex/page/1429357/).  I don't think that anybody is suggesting that ARV's eradicate HIV, but rather suppress it to such low levels that very, very few infections were noted in heterosexual intercourse (along with some other specifics... no other STD's, etc).
Title: Re: having thoughts of stopping meds
Post by: mecch on May 09, 2011, 01:44:34 pm
The one thing I'm not hearing is I stopped and.it messed everything up. I'm hearing or my precpetion is you will get worse but go back on meds and thing will be OK again.

Read again, then.  HAART has side effects and potential long-term disadvantages.  Choosing an active HIV infection (until the threshhold for treatment is reached) has long-term disadvantages.

Nobody is guaranteeing that you can just stop and start whenever your psyche wills it, and everything will always be "OK".  

Your doc made a cost benefit analysis in the first situation, putting you on HAART.  So best you clearly enunciate what the benefit of that was, and the cost.  You mention side effects but you don't specify.  Do you have any?
Title: Re: having thoughts of stopping meds
Post by: Buckmark on May 09, 2011, 01:49:54 pm
I believe the US government's guidelines for initiating HAART indicate treatment is recommended when an individual's CD4 count is at 500, and treatment should be started when the CD4 count is 350. 

http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf (http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf)

Since PozJeepGuy's CD4 is higher than 500, it's not entirely unreasonable to think about stopping meds.  But as everyone else has mentioned, regular monitoring and labs are essential, and you need to be prepared to start meds when the times comes.  "Letting nature run its course" leads to only one thing when you have HIV:  death.

If you started meds because you were diagnosed HIV positive and were jumping on the meds bandwagon, then I think it is reasonable have a discussion with your doctor about stopping them.  But you really need to think about the reasons why.  If it is because taking the pills remind you that you are HIV+, you must realize that you will be HIV+ whether or not you are taking meds.  If you're still having trouble dealing with being HIV+ and how that came to be, then that's something you will need to explore and accept.  It will be with you for the rest of your life.

Regards,

Henry
Title: Re: having thoughts of stopping meds
Post by: Joe K on May 09, 2011, 01:51:56 pm
I wish people would lay off the drop-and-die stuff. PozJeepGuy has a reasonable concern to my mind that he started meds straight after diagnosis more or less and was/is it necessary at this point? His CD4 count was well over 500 when he started, and guidelines-wise, this is a 50/50 call in the States and a no-treatment-yet call in Europe (at the moment).

- matt


Hey Jake,

For me, Matt says it all right here. I suggest that you do what you and your doctor decide is right for you. You are in a unique situation and if that offers you an option, of stopping meds, without threatening your health, then that is an option that should be seriously considered. What others do, or experience, is only illustrative, as they are not you. Brass rings sometimes present themselves in the most unlikely places. This might just be one that you want to grab.
Title: Re: having thoughts of stopping meds
Post by: mecch on May 09, 2011, 01:59:55 pm
Definitions of self. Self perception. One's will.  All of these are perfectly valid input for accepting or refusing treatment.  But sufficient?

My impression just a few years HIV+ is that some people who maintain active HIV infection, in a informed decision to avoid HAART until necessary - get on well enough and others experience one problem after another.  Shingles. Poor digestion.  Fatigue. Etc etc.  

So its all about how you individually might be able to make a go of it without meds, and for how long.

Also, just be perfectly clear to yourself what your justifications are, and be content with your choice.  And go back on the meds when you need them.  

You have to accept that there is no perfect solution to the imperfect situation.  You got the HIV, so its either active infection or HAART.  

Too many times I have seen people suffering various ills on a daily basis in order to avoid starting treatment for some psychological reason.  If its financial, I can understand.  Psychological - it seems to me that some justifications are sound, and some are phobias that best be dealt with.

The referred to ETAY, he has some very strong phobias and delusions.  




Title: Re: having thoughts of stopping meds
Post by: sam66 on May 09, 2011, 02:15:42 pm


  you must realize that you will be HIV+ whether or not you are taking meds.
Regards,

Henry

    Good point Henry, we have to accept that fact.
    I read somewhere some times it can take up to three years to come to terms with the shock of being    +ve. Like a death of a loved one or even the break up of a serious relationship.

 


Title: Re: having thoughts of stopping meds
Post by: bmancanfly on May 09, 2011, 03:45:57 pm
I don't think you've given a very compelling rationale for wanting to stop.  Simply not wanting a daily reminder of being HIV+ doesn't seem like a very good reason to stop meds to me.  You've had a stellar response from HAART.  Why would you want to let your VL go unchecked?  Uncontrolled viremia is not without it's risks.

You seem to be looking for a Mulligan here.  That being,  that you can stop meds and be assured that,  when need be,  you can restart meds without any detrimental health effects.  No one can give you that guarantee.

Next to becoming poz,  my greatest regret,  is waiting too long to start meds.  Why let this virus damage your immune system and your health any more than necessary?

Of course it's your health and your decision,  and you don't need to justify it to anyone but yourself.  But it seems to me that this is a decision better discussed with your therapist than your ID doctor.  Sounds to me like you're having a tough time coming to terms with being poz.  And that's perfectly understandable.

Best of luck,  whatever you decide.




Title: Re: having thoughts of stopping meds
Post by: newt on May 09, 2011, 04:27:17 pm
Quote
You are in a unique situation and if that offers you an option, of stopping meds, without threatening your health, then that is an option that should be seriously considered. What others do, or experience, is only illustrative, as they are not you.

to the OP I say this is very true. It's your HIV, up to you what you do, especially given the facts of the situation.

Personally, now, having read everything I have on the effects of HIV on the body I would start treatment as soon as, immediately even, sod the guidelines. This is to do with reducing the long term damage of uncontrolled HIV, on your heart etc. There are no definitive data to say it's  better/worse to start with a high CD4 count rather than around 350-500, or to start with  high count and stop for a bit. But this is my guess.  This is a position held in the abstract with the benefit of hindsight at a time when HIV is not an emotional issue for me. I am not sure I could/would say the same soon after diagnosis.

When I was making the decision to start, I hung on to the (then) guideline compliant first CD4 result around 200 before doing so. It took 2-3 years. I was well glad I started cos I felt almost instantly better. But before I took the meds I was scared, and didn't want to. This was a decision in my life.  Starting treatment was an event. If guidelines had been different, I would have done different I guess. Maybe I would have ignored em. Dunno, hard to say now. But I am pretty sure I wouldn't have done too much differently at the time.

Throughout my treatment-taking I have viewed the pills with awe, thanks, relief, annoyance, forgetfullness (yes even me), curiosity, as a toothbrush type routine, as a badge of honour and a few other things. In each case it has always been more about how I felt about HIV and therefore me, and other, bigger/more immediate things connected to HIV, or elsewhere in my life than the pills. I am okay with them now, they are dull and routine, but when I started treatment it was a big deal. 

- matt


Edited for spelling and missing 'much'
Title: Re: having thoughts of stopping meds
Post by: David_CA on May 09, 2011, 04:40:00 pm


When I was making the decision to start, I hung on to the (then) guideline compliant first CD4 result around 200 before doing so. It took 2-3 years. I was well glad I started cos I felt almost instantly better. But before I took the meds I was scared, and didn't want to. This was a decision in my life.  Starting treatment was an event. If guidelines had been different, I would have done different I guess. Maybe I would have ignored em. Dunno, hard to say now. But I am pretty sure I wouldn't have done too much differently at the time.

Throughout my treatment-taking I have viewed the pills with awe, thanks, relief, annoyance, forgetfullness (yes even me), curiosity, as a toothbrush type routine, as a badge of honour and a few other things. In each case it has always been more about how I felt about HIV and therefore me, and other, bigger/more immediate things connected to HIV, or elsewhere in my life than the pills. I am okay with them now, they are dull and routine, but when I started treatment it was a big deal. 

- matt

It's funny how different our experiences were.  I actually wanted to start meds, as I generally felt like crap and didn't want to be out of control in terms of what HIV was doing to me.  Taking ARV's was what I could do to fight back against HIV. 

It was such a non-event to me when I actually started.  I was so sick in the hospital that pretty much anything that was suggested to make me better would have been OK with me.  There was no real decision to be made; start meds and live, or don't start 'em and die.  I felt like crap, but I wasn't ready to give up and die quite yet.  For me, in a way, meds bring a sense of security... kind of like my retirement account at work.  It's a pain that I'm forced to contribute to it every month, but doing so will help provide for me later. 
Title: Re: having thoughts of stopping meds
Post by: buginme2 on May 09, 2011, 04:51:14 pm
Wow what a response.  I offer no advice.  However, if I am reading you correctly it sounds like you are just sick of having HIV, sick of being reminded every time u take meds that you have HIV, and just plain sick of it all.  Thats a very valid feeling.  I am sure every person here can relate.  Instead of trying to forget aboit HIV for awhile by not taking your meds (and therefore not being reminded of it), is there another way to get passed the feelings about being sick of it?  I know your seeing a therapist, thats great, I just hope you can get passed this without having to stop meds and possibly hurting your health.  Good luck! Keep us posted.
Title: Re: having thoughts of stopping meds
Post by: Assurbanipal on May 09, 2011, 06:02:31 pm
It seems there are a couple of issues here:

First, is it actually going to be better for your health if you stop?  Many/maybe even most, doctors nowadays would argue not -- for all the reasons Newt described.  But, as long as you monitor your labs and start back up on a timely basis the difference in your physical health will likely be marginal.  So why focus on that aspect?

Second, and perhaps more important, in your posting histoy you've indicated concern, worry and difficulty in adjusting to having picked up HIV.  Frankly, is not taking a daily pill going to help with that?  You will still be infected, and once you are sensitized to HIV, lots of things are going to remind you of it, every day.  Whether or not you take a daily pill, you will still need to deal with disclosing to potential partners, and, since you are pretty new to this you will probably worry about other (improbable ) means of transmission, not to mention wondering if every sneeze is "it" 

In other words, stopping the pills is not going to make HIV go away as an issue for you to think about and deal with.  Instead, the best way to deal with the concerns and worries is talking about them -- in therapy or through other venues. 

Finally there is the issue of infectiousness.  Yes, you are going to use condoms.  But isn't it reassuring to know that even if one breaks or something goes wrong, that you are as close to noninfectious as you could make it?  And to be clear, this is not mainly about the chance that something will go wrong -- it is mainly about feeling you have done everything in your power to protect a partner. 

Best to you
A
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 09, 2011, 06:35:30 pm
I wish people would lay off the drop-and-die stuff. PozJeepGuy has a reasonable concern to my mind that he started meds straight after diagnosis more or less and was/is it necessary at this point? His CD4 count was well over 500 when he started, and guidelines-wise, this is a 50/50 call in the States and a no-treatment-yet call in Europe (at the moment).

- matt


Matt makes quite a good point here.  The chances of someone progressin rapidly and dying as a result of AIDS are probably lower than the chances of someone being a LTNP.  The nature of the disease is a long term chipping away at your immune system.  Slowly but surely it makes progress in weakening your immune system until other pathogens which are normally easily swatted off become bothersome and bog it down.  The point of HAART is to stop the weakening process, it can reverse it to some degree but take it from those of us in the lower numbers:  this is not where you want to be.  The others are trying to reasonable but let me be the voice of abject fear.  Don't stop your meds.
Title: Re: having thoughts of stopping meds
Post by: AlanBama on May 09, 2011, 06:41:48 pm
This is a decision many struggle with, even some LTSers (see LTS forum for a similar discussion, someone wants to stop taking his meds).

It has always been very cut and dried for me, and quite clear:  meds = life.   no meds = death.   Is that overly simplistic?  Maybe.   My own personal life experience says that it is not.   I was dying before the protease drugs came out...was SO happy to get them, and imagine how ecstatic I was when they actually began to work !  Nothing, including the dreaded AZT monotherapy, had helped much until this point.  So this issue of hating my pills is just not something that I have ever wrestled with.  I used to have a little prayer of gratitude taped to my daily pill box.

Do I dislike taking my meds?  Some days, hell yes.   I hate filling my weekly pill box every Sunday night too, that takes about 20-30 minutes for me, but saves me much time in the long run.   I do think that eventually you will move past the point of equating taking pills with having HIV.   I have taken handfulls for years now, and I don't give it much more than a brief thought.   What I'm trying to say, is that I do believe it will get better for you, if you stick it out.

Wishing you the best, in whatever decisions you make.

Alan
Title: Re: having thoughts of stopping meds
Post by: eric48 on May 09, 2011, 06:48:30 pm
I understand where you coming from, but these thoughts, are not healthy thoughts. I repeat once again, without medication, your viral load will go up, your t-cell and percentage will go down, and those very solid and good numbers you have, won't be there.

Just my thoughts...


Hang in there----Ray

Ray's support has helped me a lot in many ways, especially with guilt, sense of being 'rotten', which with time I kind of put behind me.

I do not see any viable reason to go off meds unless you have a medical /financial condition that would lead to that. (please bear in mind that some people go on meds (truvada) even if they are neg...). Age also is a part of the equation

To alleviate the negative feeling that you may feel when taking meds, lets me suggest a few tricks that have worked for me:

- 1 - I prepare my pills boxes once every 8 weeks ( I have 8 pills boxes, obviously and they are $2 each)
(I see the name/box of medication only once every 2 month. In other words, once in my pill box, the meds are 'annonimized'
- 2 - I found some multivitamin that really look alike my own combo (same size, similar color, a few $/pack) and I take them occasionally (usually at lunch time)
- 3 - (I did this for a while, but I do not anymore): I would have the alarm ring at 5 AM, swallow my pills in a semi comatose state, then get back to my normal sleep/life

One other thing lets me feel better about the meds. It is a bit controversial, but here it is:

- a functional cure is not a taboo anymore
- when a functional cure becomes available, it will most likely not be for everyone to start with (there will be failures), and those who have a very very small amount of residual HIV in their body will most likely be the best candidates
- while it may take only a few weeks/months to become UD, (<40 or whatever), becoming super-UD (<1 copy/mil.) is currently achieved by a fair number of people (not every one...), and correlates with the numbers of YEARS of successfull HAART.

When the first functional cure will be offered, and it will, at some point, those who have a good number of YEARS of successfull HAART behind them, will have more chance to succeed.

Of course, the above is a bit Sci-Fi, but it may help you put things in perspective

Hope this helps

Eric
Title: Re: having thoughts of stopping meds
Post by: denb45 on May 09, 2011, 06:48:53 pm
I'm in agreement with everyone here, you've only been poz for less than maybe 2 yrs. and you haven't been on your meds that long, what is your reasoning behind THIS, I still don't see a valid one, try taking them for 23 yrs. like I have, do they cause your body to change, Hell yeah they do, but, dying aint fun, and living is always a much better option, I've seen 1st hand what happens without HIV-MEDS, trust me honey, it aint pretty, you really DON'T wanna go there......
Title: Re: having thoughts of stopping meds
Post by: bocker3 on May 09, 2011, 07:07:40 pm
As I read this thread, what kept coming to mind, as it has to others who've commented, is what truly is behind your thoughts.  I take your combo -- but with sustiva thrown in (boosted Reyataz and Atripla).  Other than the Sustiva dreams and on and off elevated bilirubin results, I've not suffered any side effects.  Here is the clincher for me though -- when I started on meds (3 months after diagnosis and a little over 4 years after my last NEGATIVE HIV test) I decided to look at it differently then you seem to be right now.  I did not, and do not, look at my pills as a reminder that I have HIV -- I look at them as a reminder that I am FIGHTING HIV.  I have gone from 288 CD4 cells to, generally in the 700's.  I feel as healthy and energetic as ever -- the HIV was sapping my energy way before I knew I had it.  The pills give the control back to me and away from the virus.  I really didn't have to think about it, my count was dropping fast and I didn't want it go lower, however, I think I would have opted to start even at a count like yours.

Of course, this is a very personal decision.  You must work it out and decide what is right for you.  Just make sure you really know what is driving your thoughts in this area.

Hugs,
Mike
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 09, 2011, 09:11:18 pm
honestly there is a small part that wants to quit just to have a escape mentally.  Yes I will admit that.  The main reason is ever since I started these things (Ritonavir 100mg, atazanavir 300mg, Truvada and the steady part some kind of boosting agent) I haven't physically felt the same.  Yes I know I wouldn't but not to the point I do. I mentally feel fogging and it just seems to be intensifying over the last two months.  I am having problems just remembering day to day stuff and having a hard time being able to focus.  This is not depression related.  The nausea just sucks.  Its not enough to shut me down but just enough to make each day a little more.... blah.  My tesosterone levels have just crashed.  They did alot of test at baseline of the study and that was one of them; 9 months ago my level was five hundred something and now its at two hundred something.  My energy level is ridiculous.  I have to come home from work and go to sleep.  Now recently started androgel to help with the testosterone levels and I will admit I don't feel like I'm going to calasp but still tired as hell. 

None of this started till the meds began.  I never had to go on meds.  Yes I jump on the bandwagon thinking its best to start off and fight from the beginning.  Now after dealing with all this I am truly wondering how much of this is the meds.  I know I haven't been positive more than a year and I am blessed we found it right out of the gate.  Just goes to show that getting tested on a regular basis is a great thing.  I want a reference point for my body; I feel this  way on meds and I want to know how will I feel off meds. 

Of course I will always discuss this with my doctor.  I am aware of the seriousness of this decision.  I really never knew there were positive people going for years and years and didn't have to take meds.  I didn't know that was ever a option. I'm asking you guys because knowing things from a medical view point is one thing.  Living it is another...
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 09, 2011, 11:21:20 pm
I would like to also say I'm just trying to get all the facts from all sides.  The longer I'm on this journey I am learning to ask questions so I can make a informed decision  unlike the one I made when starting meds.  I do know that there will come a time I will have to and I do mean have to go on meds.  I know many of you have had this debate and it may upset some of you and for that I apologize.  This is the only place I feel like I will get real answers.  I am blessed to have a lot of support but I have no one to relate to or talk to about this who is effect like you guys on here.  Its not taken for granted.  Thank you
Title: Re: having thoughts of stopping meds
Post by: Maelrod on May 09, 2011, 11:36:07 pm
I feel blessed no cuz I'm poz, blessed cuz same like you I have access to medication.  Are thousands and thousands of people who are close day by day to die just because they don't have access to get  medication and YOU are one of those who have the magic pills just don't wanna take cuz make you remember a poz status.
Title: Re: having thoughts of stopping meds
Post by: tednlou2 on May 09, 2011, 11:45:44 pm
I feel blessed no cuz I'm poz, blessed cuz same like you I have access to medication.  Are thousands and thousands of people who are close day by day to die just because they don't have access to get  medication and YOU are one of those who have the magic pills just don't wanna take cuz make you remember a poz status.


I understand your point of view.  But, he did mention other issues besides just the meds being a reminder.  And, I totally understand the point of view that we in richer countries have the luxury to debate or make these kinds of decisions.  But, that is like throwing away food.  Many die from lack of food, but we all waste food.  Jeep can't make decisions based on feeling bad that others don't have that luxury.  But, I do appreciate the sentiment behind that way of thinking. 


Jeep, you should follow your gut and brain.  You had good numbers when you started.  If it would be very unlikely to develop resistance, then you should do what you feel is best for you.  I don't understand all the studies on the issue.  Were most who didn't do as well after restarting mainly people who started with a low nadir CD4 and had been poz for years, and usually not people in your situation?
Title: Re: having thoughts of stopping meds
Post by: metekrop on May 10, 2011, 07:51:44 am
For the last month i have started to think about stopping my meds for a few reasons.  When I first got the news and after very little research I made my mind up fast to start meds.  Now after meeting more positive people, learning more, and over all experience I'm doubting my decision.  I always thought diagnose=meds.  I now hear people who have been positive for years no decades saying they never even started meds yet.  Not to mention the fact that everytime I open those damn bottles its just that reminder, but then I worry somewhat on a few levels on quitting.  One being the whole resistant thing, another being the fear of catching something and just getting sick. 

I read someones post when I asked about starting meds and I can remember it clear as day.  "once you start its taking that pill for the rest of your life."  Now looking back I really wish I would have taken that more into consideration.  I see new people coming to the forums and asking about meds.... As someone just starting this process, stop and do some real soul searching on this one.  Its not as easy as it may appear. 

I am currently on a drug study which ends in 6 month es.  So I know I won't do anything till then, but I'm wondering if anyone was on meds then quit and how are things going.  I know each experience is different but I want to hear what you all think. 

yes and I know to discuss this with the doctor.  I didn't listen before but ears and eyes are open to your thoughts

My advise to you is to continue taking the meds irrespective of anything.  Because, study shows that you have high probability that you will be HIV negative if you stay with the meds for a while with this level of high CD numbers. I want you also discuss this specific situation to your doctor as this might be a case in study in your journy with the HIV treatment.
Title: Re: having thoughts of stopping meds
Post by: mecch on May 10, 2011, 08:09:15 am
Because, study shows that you have high probability that you will be HIV negative if you stay with the meds for a while with this level of high CD numbers.

I think you have misunderstood something you read, Metekrop.  Nobody is becoming HIV- on HAART.
Title: Re: having thoughts of stopping meds
Post by: metekrop on May 10, 2011, 08:30:07 am
mecch, you mean I missunderstood the discussion in the following thread.  I don't think so.

http://forums.poz.com/index.php?topic=36867.msg458988#msg458988

Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 09:31:53 am
study shows that you have high probability that you will be HIV negative if you stay with the meds

Yes you have misunderstood both this thread and the one you link to in your answer to mecch. And you misunderstand HAART. Having a high CD4 count and percentage can go along with having a very healthy day to day life and experience that is *equivalent* to being negative.
But that is *not* at all, in any shape or form, the same as being negative, and HAART does not, and never has promised that it will somehow backwards convert someone to being 'negative'.
It is unfair to suggest that kind of wishful thinking.
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 10, 2011, 10:37:37 am
Yes you have misunderstood both this thread and the one you link to in your answer to mecch. And you misunderstand HAART. Having a high CD4 count and percentage can go along with having a very healthy day to day life and experience that is *equivalent* to being negative.
But that is *not* at all, in any shape or form, the same as being negative, and HAART does not, and never has promised that it will somehow backwards convert someone to being 'negative'.
It is unfair to suggest that kind of wishful thinking.

No backwards conversion no, but multiple doctors have said if there ever is a cure, it potentially may only work for the people who never allowed the virus to take a long term deeply rooted hold on their systems.
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 10:47:04 am
No backwards conversion no, but multiple doctors have said if there ever is a cure, it potentially may only work for the people who never allowed the virus to take a long term deeply rooted hold on their systems.

Well, you will just have to explain to me what exactly that means, and unless they (or you) know what the precise scientific nature of any cure is, it is simply meaningless.
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 10, 2011, 10:52:20 am
Well, you will just have to explain to me what exactly that means, and unless they (or you) know what the precise scientific nature of any cure is, it is simply meaningless.

I'm not about to waste hours of my time to find the article in which a couple of notable HIV doctors said that early treatment was most likely the key to curing the illness later on.  If you want to find it, go look.  Someone else who read it (because it was posted on these forums) might link to it for you, but I just don't care enough to go find it for you.  If Jake asks I'll put some time into it.
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 10:57:03 am
I'm not about to waste hours of my time to find the article in which a couple of notable HIV doctors said that early treatment was most likely the key to curing the illness later on.  If you want to find it, go look.  Someone else who read it (because it was posted on these forums) might link to it for you, but I just don't care enough to go find it for you.  If Jake asks I'll put some time into it.

Then it might not be so wise to post comment, quoting me, with something that is meaningless. If you can't back it up then save your fingers.
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 10, 2011, 10:59:18 am
Then it might not be so wise to post comment, quoting me, with something that is meaningless. If you can't back it up then save your fingers.

Except that I can, I did, and there's not a damn thing you can do about it.  Well, except for the whining. 
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 11:09:09 am
You clearly have only one motivation and that is to have a pointless argument.

I will leave you to that and hope you don't cause a counter-productive effect on your own health.
Title: Re: having thoughts of stopping meds
Post by: phildinftlaudy on May 10, 2011, 11:10:12 am
No backwards conversion no, but multiple doctors have said if there ever is a cure, it potentially may only work for the people who never allowed the virus to take a long term deeply rooted hold on their systems.
This article may assist a bit in showing the importance of keeping viral load low - through treatment - and the benefits of doing so for future treatment options - while it may not necessarily tie this to the benefits of keeping viral load suppressed as a benefit towards successful employment of a cure on an individual, I would venture to say that there would be few doctors, scientists, researchers, and others involved in treatment of HIV who would disagree that having a low or undetectable viral load would definitely be beneficially to a person whether it be for ongoing treatment and/or administration of a "cure."

Excerpt from article (with full link to article below):
When to switch?
Studies have shown that patients who switch therapy at lower rather than higher viral loads have a greater chance of subsequent successful suppression [53], and a recent study found that delay in modification of failing regimens was associated with increased mortality, especially with non-PI based regimens [1]. Furthermore, time on a failing regimen allows for the development of resistance. The guidelines discussed above all recommend changing “early” when possible, particularly for patients failing on an NNRTI-based regimen (for whom resistance may develop more quickly and multiple mutations could risk efficacy of newer available NNRTIs) [15, 16]. Thus, when failure is detected, a resistance test should be done (if possible) and therapy modified with the goal of complete viral suppression.

Source:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2946177/
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 11:26:42 am
having a low or undetectable viral load would definitely be beneficially to a person whether it be for ongoing treatment and/or administration of a "cure."

I don't see any scientific evidence or backing for that at all.

Future potential health regarding treatment interruption is not the same as potential success with a 'cure'.
The two are distinct.
For example, in the research being carried out on stem cell transplant to eradicate traces of HIV, there is no correlation between plasma viral load and success.
The underlying issue for a 'cure' for virtually *any* illness, and especially one classed as 'viral', is the actual state of health of a person when being treated with any cure. And that does not automatically correlate to plasma viral load at all, as much as it is easy to think so. Scientifically, it is far more complex and it does no good to anyone to talk in 'simple', 'easy' terms when they are not accurate.
Title: Re: having thoughts of stopping meds
Post by: phildinftlaudy on May 10, 2011, 11:36:29 am
I don't see any scientific evidence or backing for that at all.
Not really concerned with what you do or don't see scientific evidence - more concerned with what actual researchers, scientists, and doctors would see as evidence

The underlying issue for a 'cure' for virtually *any* illness, and especially one classed as 'viral', is the actual state of health of a person when being treated with any cure. And that does not automatically correlate to plasma viral load at all, as much as it is easy to think so.
Citation(s) for the above statement please.

Scientifically, it is far more complex and it does no good to anyone to talk in 'simple', 'easy' terms.
Would be interesting to know where you get off making a statement like that. To boldly pronounce that it does no good to anyone to talk in "simple" "easy" terms speaks of high level of arrogance on the part of a person making a statement such as that - but since you say so than I shall take it as the gospel truth - thank you oh omniscient one.
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 10, 2011, 11:39:17 am
http://www.natap.org/2011/HIV/050211_01.htm

"Early treatment
 
Early treatment may be a potential strategy to reduce or even control the number of persistent latently infected cells. Several groups have demonstrated that the number of infected cells, as measured by both cell-associated HIV DNA and HIV unspliced RNA, decreases to a significantly lower level if cART is initiated during acute rather than chronic infection [55,66,85,86].
 
In a recent longitudinal study of patients who initiated cART during very early acute infection and stayed on cART for a prolonged period, in five of 32 (16%) patients following cessation of cART, HIV RNA was maintained at below 50 copies/ml for a median of 77 months off cART [85]. The use of very early cART may have had a significant impact on the number of infected cells as measured by total HIV DNA (Fig. 2) [20,85,108-110]. However, the findings from this study were in contrast to many other studies of viral rebound in nearly all patients following cessation of cART, even when initiated during acute infection [87,111,112]. The role of very early treatment initiation in limiting seeding of the HIV reservoir, as well as preserving immune responses capable of controlling HIV replication, requires further investigation."




I believe it was Galliano who said that limiting the early seeding of the reservoirs will potentially be a requirement to a cure.  This article discusses the mechanism he was talking about.
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 11:48:15 am
Not really concerned with what you do or don't see scientific evidence - more concerned with what actual researchers, scientists, and doctors would see as evidence

So can you provide links to that then?


As far as how successful any 'cure' for anything is, of course success depends on the state of the health of a patient. I can't believe you could cast doubts on such an obvious truth.

But again, I suspect it is the same old chesnut on this forum among a substantial number. If someone says something you don't like, you revert to being a snotty-nosed spoilt, defensive little 5 year old.
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 10, 2011, 11:50:27 am
So can you provide links to that then?


As far as how successful any 'cure' for anything is, of course success depends on the state of the health of a patient. I can't believe you could cast doubts on such an obvious truth.

But again, I suspect it is the same old chesnut on this forum among a substantial number. Say something you don't like and you revert to being a snotty-nosed spoilt, defensive little 5 year old.

^ Funny you say that.

Basically everything you say is contradictory in nature.  I have no agenda so why would I lie about having read an article which states what I have espoused?  What's your agenda?
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 11:50:45 am
http://www.natap.org/2011/HIV/050211_01.htm

"Early treatment
 
Early treatment may be a potential strategy to reduce or even control the number of persistent latently infected cells.

Still has zero to do with a 'cure'. And once again, HAART acts on plasma viral load and *nowhere* else. That's a medical and scientific fact.
There are no simple mechanisms to measure viral load outside of plasma because to do so requires very invasive medical procedures, and even then its accuracy is not proven.
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 11:54:14 am
^ Funny you say that.

Basically everything you say is contradictory in nature.  I have no agenda so why would I lie about having read an article which states what I have espoused?  What's your agenda?

Who said you lied?

I asked you for a link to it. You said you couldn't be bothered to find it.

My agenda is about mature, fact-based discussion and not wasting time listening to temper tantrums from people who maybe need to get a little bit of personal insight and cut the defensive crap.
Doesn't it occur to you why such a very large number of poz people don't post here?
The answer is you and those who post like you. Who needs it?
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 10, 2011, 11:55:59 am
Still has zero to do with a 'cure'. And once again, HAART acts on plasma viral load and *nowhere* else. That's a medical and scientific fact.

http://www.nature.com/mi/journal/v1/n1/full/mi20071a.html

"These findings suggest that the virus itself has a central role in the GI tract pathology observed and that HAART can ameliorate enteropathy."



Next?
Title: Re: having thoughts of stopping meds
Post by: phildinftlaudy on May 10, 2011, 11:58:43 am
So can you provide links to that then?
I did provide a link and an excerpt - you didn't accept it.

As far as how successful any 'cure' for anything is, of course success depends on the state of the health of a patient. I can't believe you could cast doubts on such an obvious truth.
I didn't cast doubts at all on this.  Asked for citation. But, I actually agree that the success rate of a cure is very much dependent on the state of health of a person.  Last time I checked, viral load levels can have a definite impact on the state of health of a person - thus, a high viral load and its impact on a person's state of health would most likely impact how successful a "cure" might be. I can't believe you could cast doubts on such an obvious truth.


But again, I suspect it is the same old chesnut on this forum among a substantial number. If someone says something you don't like, you revert to being a snotty-nosed spoilt, defensive little 5 year old.
I will let your retort speak for itself.
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 10, 2011, 11:59:59 am
Who said you lied?

I asked you for a link to it. You said you couldn't be bothered to find it.

My agenda is about mature, fact-based discussion and not wasting time listening to temper tantrums from people who maybe need to get a little bit of personal insight and cut the defensive crap.
Doesn't it occur to you why such a very large number of poz people don't post here?
The answer is you and those who post like you. Who needs it?

You keep throwing out "facts" without any sort of concrete evidence to support your arguments either.  As for the forums being a bit abrasive that is only the case if you were to come here and say for example that HAART were ineffective against HIV, or other pseudo-denialist propaganda.

If you want emotional support you can get that here but it comes with a potentially unwanted dose of the truth usually.
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 12:03:53 pm
http://www.nature.com/mi/journal/v1/n1/full/mi20071a.html

"These findings suggest that the virus itself has a central role in the GI tract pathology observed and that HAART can ameliorate enteropathy."



Next?

Please read the article again. HAART does not suppress HIV in the gut mucosal lining and indeed measuring gut function in poz people is not in the treatment guidelines in North America or Europe.
It should be of course, because gut health is a far more accurate predictor of potential ill health trhan either CD4 counts or VL.
I spent six months hammering and arguing with my HIV Doc until I got the obstinate bugger to refer me for multiple GI Function tests - faecal calprotectin, GI permeability and absorption, and a metabloic profile of organic acids. It was pretty enlightening and lead to specifc treatment around the gut that caused my CD4s to increase significantly.

But that article still has no relevance to 'cure' because HAART has *no* action to counter poor gut function.

As for the forums being a bit abrasive that is only the case if you were to come here and say for example that HAART were ineffective against HIV, or other pseudo-denialist propaganda.

Really? Then please quote me where I have said either that HAART is ineffective against HIV, or spread denialist propaganda?
That kind of stuff sounds a bit Hitlerian to me.
Say as we say, think as we think or you're not welcome.
Title: Re: having thoughts of stopping meds
Post by: Solo_LTSurvivor on May 10, 2011, 12:05:19 pm
My agenda is about mature, fact-based discussion and not wasting time listening to temper tantrums from people who maybe need to get a little bit of personal insight and cut the defensive crap.
Doesn't it occur to you why such a very large number of poz people don't post here?
The answer is you and those who post like you. Who needs it?

How ironic this is coming from someone who sent me a very nasty PM over something I recently posted on another thread because you were forbidden to post on that forum in order to get the last word in.  

You say you're not looking to fan any flames, yet you deliberately appear to seek to start arguments. Before you offer your thoughts as to why many people don't post here, you need to remember that you are part of that so-called defensiveness and other off putting activities people see when they read some of these threads.

edited to add: apologies to Jake for participating in this unnecessary hijacking
Title: Re: having thoughts of stopping meds
Post by: newt on May 10, 2011, 12:06:25 pm
Would people kindly stay on-topic or start their own threads

thanks

- matt
Title: Re: having thoughts of stopping meds
Post by: drewm on May 10, 2011, 12:08:41 pm
(http://i55.tinypic.com/whbl2p.jpg)
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 12:09:55 pm
How ironic this is coming from someone who sent me a very nasty PM over something I recently posted on another thread because you were forbidden to post on that forum in order to get the last word in.  

You say you're not looking to fan any flames, yet you deliberately appear to seek to start arguments. Before you offer your thoughts as to why many people don't post here, you need to remember that you are part of that so-called defensiveness and other off putting activities people see when they read some of these threads.

edited to add: apologies to Jake for participating in this unnecessary hijacking

I sent you a PM because, in another thread of someone considering have a treatment break, you suggested I was probably dissident/denialist.

What did you expect?

I have no respect for your kind of stalinist, orwelian 'truth speak' - you make Goebbels look like a kid at a tea party.
Title: Re: having thoughts of stopping meds
Post by: Matty the Damned on May 10, 2011, 12:10:48 pm
I sent you a PM because, in another thread of someone considering have a treatment break, you suggested I was a probably denialist.

What did you expect?

I have no respect for your kind of stalinist, orwelian 'truth speak' - you make Goering look like a kid at a tea party.

D00d!

MtD
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 10, 2011, 12:11:35 pm
I sent you a PM because, in another thread of someone considering have a treatment break, you suggested I was a probably denialist.

What did you expect?

I have no respect for your kind of stalinist, orwelian 'truth speak' - you make Goering look like a kid at a tea party.

We just Godwin'd woot!
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 12:14:01 pm
The 'aidsmeds forum' attack dogs!

You really can't see how sad and fucked up you appear can you? ::)
Title: Re: having thoughts of stopping meds
Post by: Matty the Damned on May 10, 2011, 12:15:46 pm
The 'aidsmeds forum' attack dogs!

You really can't see how sad and fucked up you appear can you? ::)

Duzzent matter, doll. You Godwinned.

</thread>

MtD
(Who hates to agree with Hecky but there ya go)
Title: Re: having thoughts of stopping meds
Post by: denb45 on May 10, 2011, 12:18:46 pm
(http://i55.tinypic.com/whbl2p.jpg)

Drewm, great pic of the cats, my 2 boys do this all the time, and then they kiss and make-up with each other  :D only to do it all over again, guess they been watching me & Bob for too many yrs. they have to have got  THIS somewhere  :D :D :D were both Double Scorpio men the same age what can I say  ;D
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 12:19:20 pm
Duzzent matter, doll. You Godwinned.

</thread>

MtD
(Who hates to agree with Hecky but there ya go)

 ;D whatever makes you happy.
Title: Re: having thoughts of stopping meds
Post by: Ann on May 10, 2011, 12:39:21 pm
you revert to being a snotty-nosed spoilt, defensive little 5 year old.

Matt, you claim you want a mature, fact-based discussion, yet you resort to childish name-calling. This is a personal attack and we do not permit attacks of this nature on these forums.

Consider yourself warned.

Ann
Title: Re: having thoughts of stopping meds
Post by: denb45 on May 10, 2011, 12:46:41 pm
 Getting back on Topic here   @ Poz jeep guy, how long have you been on the andro-gel? 200 testosterone level is low, it should be way up in the 900s to 1600s for a normal high?  also  you must give your self some time with that, if that doesn't work you might wanna tlak to your doctor about getting the IM-inject-able testosterone called (CYPIONATE) inject-able USP, that works way better than andro-gel, ask your doctor about this  ;)
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 12:51:30 pm
Matt, you claim you want a mature, fact-based discussion, yet you resort to childish name-calling. This is a personal attack and we do not permit attacks of this nature on these forums.

Consider yourself warned.

Ann

Another piece of orwellian 'truth speak'. I have been the one attacked consistently.
You are clearly very selective about what you let your eyes see.
But then I don't expect anything else from you Ann, even if I hadn't witnessed it myself your reputation precedes it very widely.
Title: Re: having thoughts of stopping meds
Post by: Matty the Damned on May 10, 2011, 12:53:51 pm
Another piece of orwellian 'truth speak'. I have been the one attacked consistently.
You are clearly very selective about what you let your eyes see.
But then I don't expect anything else from you Ann, even if I hadn't witnessed it myself your reputation precedes it very widely.

Double plus butt hurt quick wise.

MtD
Title: Re: having thoughts of stopping meds
Post by: Rev. Moon on May 10, 2011, 12:56:53 pm
Another piece of orwellian 'truth speak'. I have been the one attacked consistently.
You are clearly very selective about what you let your eyes see.
But then I don't expect anything else from you Ann, even if I hadn't witnessed it myself your reputation precedes it very widely.


For someone who is constantly throwing pseudo-intellectual comments accusing the mods and other members of communism, elitism, lack of original thought, and other stupidities you are not very clever, are ya?   This is not the first time that you have attacked an admin.  If you don't like this place and its members why dont you just go away.  Trust me, we are better off without the likes of you.

Hugs and kisses  :-*
Title: Re: having thoughts of stopping meds
Post by: David Evans on May 10, 2011, 12:57:16 pm
I'm seconding Ann's request for you (Matt39) to settle down and cool off. It's one thing to offer your own experience and knowledge and quite another to hijack a thread to promote your own philosophy and attack other members in the process.

I'd also like to ask that you do a little more homework. Actually, antiretroviral drugs do achieve intracellular concentrations in cells in the gut and in macrophages in the brain and testes. The compartments are different, and protected, but ARVs do get there. They also are able to reduce HIV levels in those places, and it's not just because of spill-over effects from plasma. One of the pieces of evidence for this is the restoration (though very slow) of gut lymph tissue in people taking long-term suppressive ARVs.

Lastly, in my cure-related activism work I have been able to directly ask some of the world's top virologists in whom HIV eradication strategies are most likely to work and their answers are nearly universally the same - either people who are caught in the first few weeks or months after infection or those who started ARVs at that time - and the reason for that is to halt the destruction of the gut lymphoid architecture and to minimize the establishment of latent reservoirs. I offer this last piece as a grain of salt, as it is still theoretical, but folks like Fauci and Bruce Walker have said as much in editorials they've published about the possibility of a cure.

I bring this last point up because the original poster is faced with exactly this choice: stop therapy and potentially do harm to his gut lymphoid architecture and enlarge the pool of latent virus, knowing all the while that the thinking here is strong, and supported by some evidence, but still somewhat theoretical --- or to take a break from the meds until his CD4s cross what the DHHS guidelines panel has deemed the danger zone (below 500).

That's a really, really difficult decision to make and one that deserves our respect and support and that isn't helped by either misinformation or personal attacks.

David
Moderator
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 12:58:35 pm
Here is another piece of evidence that points very clearly to state of health at time of diagnosis being a far greater determinant of potential future ill-health and death, that is relevant to this thread:
A third of deaths in patients with HIV are attributable to other serious illness present at time of HIV diagnosis:
http://www.aidsmap.com/A-third-of-deaths-in-patients-with-HIV-are-attributable-to-other-serious-illness-present-at-time-of-HIV-diagnosis/page/1779124
3 May 2001
That kind of evidence is crucial to anyone considering a treatment interruption.
Title: Re: having thoughts of stopping meds
Post by: Miss Philicia on May 10, 2011, 01:00:53 pm
They have absolutely no effect on HIV anywhere else in the body - in the Gut Mucosal Lining

WRONG
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 01:02:01 pm
I'm seconding Ann's request for you (Matt39) to settle down and cool off. It's one thing to offer your own experience and knowledge and quite another to hijack a thread to promote your own philosophy and attack other members in the process.

I request you read the posts again. I queried a post by someone else that was inaccurate and misleading. When I asked for some evidence, they replied that they could not be bothered. I did not promote any philosophy.
Title: Re: having thoughts of stopping meds
Post by: Matty the Damned on May 10, 2011, 01:02:40 pm
Here is another piece of evidence that points very clearly to state of health at time of diagnosis being a far greater determinant of potential future ill-health and death, that is relevant to this thread:
A third of deaths in patients with HIV are attributable to other serious illness present at time of HIV diagnosis:
http://www.aidsmap.com/A-third-of-deaths-in-patients-with-HIV-are-attributable-to-other-serious-illness-present-at-time-of-HIV-diagnosis/page/1779124
3 May 2001
That kind of evidence is crucial to anyone considering a treatment interruption.

Burn straw man, burn. ::)

MtD
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 01:03:46 pm
WRONG

Fine. When 'plasma' is re-defined as meaning 'gut mucosal lining', 'lymph nodes' and reservoirs elsehwere in the human body I hope you let me know.
Title: Re: having thoughts of stopping meds
Post by: Ann on May 10, 2011, 01:07:33 pm
I request you read the posts again. I queried a post by someone else that was inaccurate and misleading. When I asked for some evidence, they replied that they could not be bothered. I did not promote any philosophy.

But that person didn't resort to personal attacks. YOU did.

Keep it up and you'll be given a time out. This is your last warning.

This hijack ENDS HERE, ENDS NOW.

Ann
Title: Re: having thoughts of stopping meds
Post by: CaptCarl on May 10, 2011, 01:13:46 pm
Doesn't it occur to you why such a very large number of poz people don't post here?

Or it could be, maybe, that they're scared off by overbearing pompous douchebags. Or sommat like that...

CaptCarl
Title: Re: having thoughts of stopping meds
Post by: drewm on May 10, 2011, 01:15:44 pm
Or it could be, maybe, that they're scared off by overbearing pompous douchebags. Or sommat like that...

CaptCarl


Well said CaptCarl...

(http://i55.tinypic.com/27wymc1.jpg)
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 01:15:55 pm
Lastly, in my cure-related activism work I have been able to directly ask some of the world's top virologists in whom HIV eradication strategies are most likely to work and their answers are nearly universally the same - either people who are caught in the first few weeks or months after infection or those who started ARVs at that time - and the reason for that is to halt the destruction of the gut lymphoid architecture and to minimize the establishment of latent reservoirs. I offer this last piece as a grain of salt, as it is still theoretical, but folks like Fauci and Bruce Walker have said as much in editorials they've published about the possibility of a cure.

David

I appreciate your view on HIV and the GUT, and I do not dispute conversations you have had.
However, directly related to my *own* health, I have read *every single* piece of research published on 'HIV and the Gut', from within research directly concerning HIV, *and* virtually every piece of research concerning Gut Health.
I have had literally hours of discussions concerning my own gut function, gut health in general, and HIV and the gut specifically with both my own UK HIV Consultant, his head of department, and two of the most senior Gastroenterologists in the UK. There is no clear scientific or medical evidence to show that damage found post diagnosis is definitely caused by the initial infection or if it preceded it, and no way of knowing the degree of any poor gut function that is attributable to HIV.
The reason for that is because Gut Function monitoring is *still* not a part of treatement guidelines.
There is enormous anecdotal evidence that poz people who share various diet and lifestyle co-factors prior to infection/diagnosis almost definitely have asymptomatic gut function disorder, known as intestinal dysbiosis, and that it is very common among a large section of poz people because of lifestyle factors.
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 10, 2011, 01:19:34 pm
But that person didn't resort to personal attacks

Do I need to get back to SpecSavers then?
I probably have left it a tad more than a year sincde I had my eyes tested, but thanks for that Ann, I didn't realise quite how poorly-sighted I had become.
I appreciate that. :)
Title: Re: having thoughts of stopping meds
Post by: Ann on May 10, 2011, 01:33:41 pm
Do I need to get back to SpecSavers then?
I probably have left it a tad more than a year sincde I had my eyes tested, but thanks for that Ann, I didn't realise quite how poorly-sighted I had become.
I appreciate that. :)

Nowhere did Hellraiser attack you or call you names.

You perhaps are the one who needs Spec-Savers - he also did not accuse you of posting denialist propaganda.


As for the forums being a bit abrasive that is only the case if you were to come here and say for example that HAART were ineffective against HIV, or other pseudo-denialist propaganda.



Really? Then please quote me where I have said either that HAART is ineffective against HIV, or spread denialist propaganda?
That kind of stuff sounds a bit Hitlerian to me.
Say as we say, think as we think or you're not welcome.


As you have seen fit to continue this hijack despite two moderators asking you not to, I'm giving you that time out I warned you about. Your time out will last for seven days Do not attempt to create a new account to get around your time out because if you do, you will be permanently banned.

Ann
Title: Re: having thoughts of stopping meds
Post by: drewm on May 10, 2011, 01:35:08 pm
(http://i53.tinypic.com/r9mnv8.png)

Personally speaking, I am not in any position to consider stopping and restarting meds or anything of the such, however, I read these threads with tremendous interest because usually there is something I can take home from the discussion that leads to more questions or a renewed interest in another topic.

It would be nice (in a perfect world) if everyone could state their opinions, back up statements with facts (links) and let the chips fall where they may. No one's mind is going to be changed by back-biting, bitter feuds on here, they just aren't.

It also dawns on me, that unless I am missing something, no one on here is a doctor or researcher, per se, relaying what they know. We are usually reading second and third hand accounts of what someone said somewhere about something. I like reading about the different research and can appreciate the strong emotion attached to this bug but these ad nauseum rants really need to stop.
Title: Re: having thoughts of stopping meds
Post by: buginme2 on May 10, 2011, 01:59:59 pm
Good point drew! This topic obviously has a lot of emotion attached to it.  Jake sorry your thread got hijaked.  Talk this over with your doc.  Maybe a change of meds would solve the nausia issues. I'm on Atripla and have had no nausia. 
Title: Re: having thoughts of stopping meds
Post by: Rev. Moon on May 10, 2011, 02:14:01 pm
Maybe a change of meds would solve the nausia issues. I'm on Atripla and have had no nausia.  


In the end Jake will need to be really honest with himself as to why he is having these thoughts about the meds.  If it is that the side effects are so severe that he feels like he is no longer himself then he should address the possibility of changing his current regimen. If it is that he feels as though taking these pills is a constant reminder of the fact that he is poz (and I'm afraid that this is the bottom line based on his OP) then it is a psychological matter and we have a different issue to deal with here.  Perhaps coming to terms with some facts will be more useful than simply going off meds.
Title: Re: having thoughts of stopping meds
Post by: wolfter on May 10, 2011, 02:23:14 pm
I hope the OP found these responses informative.
Title: Re: having thoughts of stopping meds
Post by: denb45 on May 10, 2011, 02:25:01 pm
Well my general consensus for Jake aka= Poz Jeep Guy, would definitively be to speak with his doctor about all of this, I think it may clear up a lot of this confusion as to why he's having thoughts of stopping meds, any combo of meds can be changed or tweaked for the better  ;)
Title: Re: having thoughts of stopping meds
Post by: phildinftlaudy on May 10, 2011, 02:32:51 pm
Well my general consensus for Jake aka= Poz Jeep Guy, would definitively be to speak with his doctor about all of this, I think it may clear up a lot of this confusion as to why he's having thoughts of stopping meds, any combo of meds can be changed or tweaked for the better  ;)
I agree Dennis -
it is definitely one of those decisions that a person should make after discussions with their doctor, in consultation with others with experience, a review and understanding of the research, etc.  Ultimately, it is decision that each person has to make for him/herself. 

I started meds early on - with a low viral load and cd4 that had only once dipped below 500.  Are there times I have regretted starting meds?  A couple.  But, I have also heard of more cases of people having difficulty getting their cd4s up after delaying meds then I have of people's cd4s going to optimal levels after delaying the start of meds.  But, of course, this is only what I have heard - and my experience, in the whole scheme of things is limited.  I had a partner who did not go on meds until his cd4s were single digit and he ended up hospitalized near death - now, 15 years later his cd4 are almost double mine.

While it is good to get feedback on these forums - decisions about whether to go on meds or not or to stop taking meds should definitely rely on discussions with a doctor(s) - and discussions that focus on the physical, mental, social, and any other factors that can or may influence ones decision.
Title: Re: having thoughts of stopping meds
Post by: drewm on May 10, 2011, 02:36:22 pm
"While it is good to get feedback on these forums - decisions about whether to go on meds or not or to stop taking meds should definitely rely on discussions with a doctor(s) - and discussions that focus on the physical, mental, social, and any other factors that can or may influence ones decision."

The best piece of advice I have read yet. While these opinions can help to guide a decision, medical advice is absolutely essential before the final decision is made.
Title: Re: having thoughts of stopping meds
Post by: David_CA on May 10, 2011, 02:39:22 pm
Perhaps the stopping of meds won't be such an issue if the OP realizes / acknowledges that it will, most likely, only be a temporary stay.  Most of us aren't LTSP's or LTNP's.  If he  stops meds, he needs to understand that he'll probably have to restart them at some point.  To me, it might be easier to stay on the current course than to resign myself that 'HIV has won once again' when I had to restart meds.  Of course, I'm not the OP with the issues that meds might be causing.
Title: Re: having thoughts of stopping meds
Post by: Raf on May 10, 2011, 05:04:24 pm
I cannot contribute too much to the subject, since I didn't had an option regarding meds, I had to take them or I would have died back in 2008 (I doubt that I made to 2009 if the aids keep progressing in me), but I kinda agree with denb45, OP, are you and your doctor totally convinced that the meds are affecting your testosterone levels? or may be something else? you could start a testosterone therapy...if I were in your position the last thing I would stop are the meds. Sooner or later you'll have to return to them, and believe me, the OI in the aids stage are not pretty.
Title: Re: having thoughts of stopping meds
Post by: newt on May 10, 2011, 06:41:28 pm
Quote
If it is that the side effects are so severe that he feels like he is no longer himself then he should address the possibility of changing his current regimen. If it is that he feels as though taking these pills is a constant reminder of the fact that he is poz (and I'm afraid that this is the bottom line based on his OP) then it is a psychological matter and we have a different issue to deal with here.

In my experience resolving side effects can help resolve thinking and being, and vice versa.

The testosterone thing intrigues me and leads me down a windy path of looking at a class metabolic effect, for some people get on with PIs and some don't (likewise NNRTIs and other drug classes), it's probably in most respects genetic in origin if it is related to this, but this is a research question (worth asking a very nerdy doc though).

- matt
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 10, 2011, 10:08:06 pm
So I go in tomorrow for my two month check in for the study and I called my doctor and made a appointment afterwards to discuss all this.  I promise I will not make this decision with out my doctor being involved.  Newt my friend and to many others please excuse my ignorance but i don't understand PI or NNTI, among half of the other information I am reading.  I am taking my laptop to the doctors to office tomorrow to ask what alot about what you guys are saying.  Everytime I feel I start to understand you guys throw out so much info its hard to keep up.  Also making me realize I can't make a decision if I don't understand everything.  Hellraiser I also really didn't understand the info you were giving me.  I hate to admit to that but I think its better to honest with all this. 

I really can't begin to say thankyou enough guys for the insight. 

I forget as I type  who asked about the details of the testosterone.  (sorry) I have been on the androgel now for one month.  I will have blood drawn tomorrow to check the level and go from there.  I said earlier it was two hundred something. It was 298 two months ago.  I'm really hoping what newt just said is true that if we can control the side effects I wouldn't mind staying on meds. 

all I know is I didn't feel tired or shitty or nauseated until the meds started.  I just want to physically feel normal again.  I know the mental blah of all this will get easier and it does day by day.  I promise its not the main reason for debating taking meds.  its just apart of it. 
Title: Re: having thoughts of stopping meds
Post by: SunnyFlorida on May 10, 2011, 11:17:41 pm
I'm so glad that you're consulting your doctor about this and having everything together for him to go over. I hope for the best for you, and whatever you two decide to do, we will always be here to support you 100%.
Title: Re: having thoughts of stopping meds
Post by: Solo_LTSurvivor on May 10, 2011, 11:30:18 pm
all I know is I didn't feel tired or shitty or nauseated until the meds started.  I just want to physically feel normal again.  I know the mental blah of all this will get easier and it does day by day.  I promise its not the main reason for debating taking meds.  its just apart of it. 

Jake, it's good to hear that you will be speaking with your doctor about this matter.  Keep us posted.  I only want to make one comment regarding this statement, and please don't look at it as if I'm trying to light the flame to something.  You do realize that no matter what medication might be prescribed for you, there is always the risk of potential side effects, right?  Think about it.  This is why when you see those drug commercials on TV, they rattle off a long laundry list of possible side effects in order to cover their asses to prevent someone from bringing a lawsuit, because their doctor/pharmacist didn't advise them of certain possibilities, and they didn't read the printout the pharmacist sticks in the bag.

Trust me, some people will try to do all sorts of things these days - and it's very easy for someone to say "my doctor didn't say this would happen to me if I took these pills" and look for justification to tell themselves they are better off, and not look for possible alternatives -- that is, after they get done suing the pants off the doctor and everyone else.  Healthcare is a partnership.  You have to be an active participant.  There's  nothing wrong with asking questions, or discussing other solutions with your doctor if you feel something isn't working for you.  You have to learn to be your own advocate when it comes to this virus - and pretty soon everything just becomes old hat   ;)

Good luck.
Title: Re: having thoughts of stopping meds
Post by: newt on May 11, 2011, 01:04:07 pm
Sorry Jake about the acronyms

PIS are protease inhibitors, a class of drug that includes Reyataz and Norvir. NNRTIs are non-nucleoside reverse transcriptase inhibitors, another class of drug that includes, for example, Sustiva. Different drugs work at different parts of the HIV life-cycle. There's a handy explanation and diagram here:

http://i-base.info/guides/starting/hiv-lifecycle

- matt
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 11, 2011, 06:19:29 pm
Thanks newt.   OK guys and gals so I went to the doc today.  I really like my doctors office.  Did the normal blood draws for the study and received my numbers.  viral load ud, CD4 1128 and my % went up to 41%.  Great numbers and I am thankful for that. 

After meeting with the study folks I met with my doctor.  We talked for almost 2 hours.  Everything I told you guys I told her.  I asked about going off meds and insistently she wasn't too happy about it.  I asked why is there people who have gone years, decades, and some that never go on meds. (once again this is being put in terms that I can understand) Basically she said that there are certain strains and some (less than 1%) will never have to take meds because the HIV doesn't communicate right and leaves it somewhat dormant.  Others have non-aggresive strains that gives them years and decades but the virus still does it damage.  She said I wasn't either one.  I immediately asked how do you know.  She said in the extremely short time of being positive (once again doctor and i believe we found this with in 6-8 months of converting) my viral load was climbing fast.  She looked me in the face and said you need to be on meds. 

Then I started telling her about what and how I am feeling.  (side note: I have told them from day one about how i feel.  Since its only been 8 months we both agreed give it some more time to mellow out and if it wasn't working we would change directions)  I brought up the fact I don't know if its the HIV or the meds that I'm feeling.  She said probably both.  I brought up I want a reference point some way some how.  Now the lady I see is actually a doctor of nursing.  She informed me she was going to get one of the doctors because she felt she needed his help here.  So Dr. Greenburg joins us and he starts asking a million questions.  I explain all about the nausea, the fatigue, getting dizzy (to the point I have fallen twice and have one hell of a bruise), tingling in my hands and feet, and this funky taste in my mouth.  He thinks alot of this is the meds. So they drew a shit load more blood and were going to run more test.  Long story short I will go back in 2 weeks.  They double my androgel and lets see what that does.  When the blood work comes back we will make the decision on what needs to be done including switching to a new med depending what the blood test show. 

I learned a few things and I became confussed on a few thing.  I didn't know that HIV cells die off.  I understand the meds to basically be like a comdon that coats the virus and doesn't allow it to bind to your body.  But I still don't understand what happens with the virus that already has bonded with your body.  They also talked about pockets that build up in your stomach, brain, and ..... shit I can't remember the last one.  I still don't understand that one much.  In these pockets is the virus still active?? Or with the meds are they too dormant. 

Lastly we addressed the depression.  They mentioned going on a antidepressant and I am so so against this one.  I really feel if we figure out whats going on physically the depression will ease and it has eased with time.  I don't want to take more pills.  So I guess at this point we wait two weeks and go back and see what blood work says and move forward from there. 

If anyone has insight to some of the questions that would be great.  I need some to explain on a level that really sinks in. 
Title: Re: having thoughts of stopping meds
Post by: woodshere on May 11, 2011, 07:23:22 pm
Lastly we addressed the depression.  They mentioned going on a antidepressant and I am so so against this one.  I really feel if we figure out whats going on physically the depression will ease and it has eased with time.  

Not quite sure why you are so against taking an antidepressant.  I am bipolar which is a medical condition the same as depression.  When I go off my meds all hell breaks loose.  My medicine keeps everything in check and I live in a better place.  If you are suffering from clinical depression, it contributes to fatigue.  An antidepressant will lead to feeling better.  It might take awhile to get the right one, but when you do the rewards are great.

I don't want to take more pills. 

This is at least the 3rd reference you have made negatively regarding taking medications.  Medications are there to help you.  Sure there might be side effects, but the good far out weighs the bad in my opinion.  I think it  might be a good idea to reflect on this aversion to meds.

The seriousness you have addressed this issue is applaudable.  Whatever your decision wish you the best.
Title: Re: having thoughts of stopping meds
Post by: SunnyFlorida on May 11, 2011, 07:51:03 pm
Not quite sure why you are so against taking an antidepressant.  I am bipolar which is a medical condition the same as depression.  When I go off my meds all hell breaks loose.  My medicine keeps everything in check and I live in a better place.  If you are suffering from clinical depression, it contributes to fatigue.  An antidepressant will lead to feeling better.  It might take awhile to get the right one, but when you do the rewards are great.

There are two types of depression... Situational and clinical. Obviously you know of clinical depression based on what you just said. My guess is that Jake wants to avoid taking medication for depression if it's only situational, and believe me, the symptoms he just discussed with his doctor, nurse and us would certainly be a factor for situational depression. I'm in his shoes right now (in the manner that I'm going through maladies and nobody can figure out what's causing them so far, and is disabling enough to keep me in bed some days) and I can tell you for a fact that it can cause severe situational depression. On days that I feel like myself (ie: without having to contend with extreme fatigue, brain fog and painful diarrhea) I feel better about myself.

I would probably do the same thing Jake is doing... Holding off on the depression meds until I'm able to count out other factors. If it turns out to be clinical, then I'd go for the antidepressants. He's probably similar to me in that I prefer to get at the root of the problem instead of masking the associated symptoms.

AAAAAANYWAY, Jake, as woodshere said, I applaud the manner in which you approached this and also hope for the best for you!
Title: Re: having thoughts of stopping meds
Post by: edfu on May 12, 2011, 01:13:24 am
There are two types of depression... Situational and clinical. Obviously you know of clinical depression based on what you just said. My guess is that Jake wants to avoid taking medication for depression if it's only situational, and believe me, the symptoms he just discussed with his doctor, nurse and us would certainly be a factor for situational depression. I'm in his shoes right now (in the manner that I'm going through maladies and nobody can figure out what's causing them so far, and is disabling enough to keep me in bed some days) and I can tell you for a fact that it can cause severe situational depression. On days that I feel like myself (ie: without having to contend with extreme fatigue, brain fog and painful diarrhea) I feel better about myself.

I would probably do the same thing Jake is doing... Holding off on the depression meds until I'm able to count out other factors. If it turns out to be clinical, then I'd go for the antidepressants. He's probably similar to me in that I prefer to get at the root of the problem instead of masking the associated symptoms.

AAAAAANYWAY, Jake, as woodshere said, I applaud the manner in which you approached this and also hope for the best for you!

I do not understand why you persist in posting about your maladies here, as much as I really do sympathize with your problems.  The fact remains that you are not HIV-positive.  To the best of my knowledge, you are the only HIV-negative person who posts on this site about your medical situation.  You are undoubtedly confusing the issues relating to those who are HIV-positive.  Unless one researches your posting history, it would appear that your posts are from another HIV-positive person, although in some instances you have revealed your status.     

You have stated that you are here to support your HIV-positive friend, klouny.  This is admirable and to be commended, but how are you supporting him with your constant detailing of your own medical problems?  They are disturbing, without a doubt, but this is a site for those who are HIV-positive.  I am certain that I will be condemned for this harsh comment, but, really, what would prevent many HIV-negative persons from constantly posting here about medical problems?    Those who are HIV-positive have enough problems to worry about.  I wish you good health. but, please, do not continue to confuse HIV-positive health issues with your own.   
Title: Re: having thoughts of stopping meds
Post by: SunnyFlorida on May 12, 2011, 01:15:52 am
edfu, you totally missed my point. However, this would be better discussed between the two of us through PMs, so in the interest of avoiding derailing the thread, I will write up a proper reply privately.
Title: Re: having thoughts of stopping meds
Post by: newt on May 12, 2011, 03:20:27 am
Hello, Jake

I am glad the doc stepped.

Taste changes, problems with balance and depression are all uncommon but noted side effects of atazanavir. If  these problems arrived with taking the meds, me personally, I would be pushing for a different drug if you decide to stay on them.

There's no way the nurse can say your viral load is rising fast. Viral load tests have a broad range of accuracy. Your viral load can be 1/3rd to 3 times the result on the piece of paper. Given your recent infection and moderate viral load (this means 10,000 to 100,000, 50,0000 on average), I would say your body has mounted a typical response to controlling the virus in its initial stages of infection.

The concept of "aggressive" strains of HIV is rubbish. Some types of HIV reproduce faster, maybe as much as 50% faster, and some slightly slower, than "ordinary" HIV. But there is nothing to show that this in itself produces worse illness or faster progression. How you and your strain of HIV get on is probably down to your genetics.

HIV meds work by blocking the genetic information in the HIV virus at various points. Some do this by stopping the virus getting into your cells in the first place, some do this by interfering with the virus when it tries to copy itself. HIV goes everywhere and eventually sets up home in different parts of the body. The medical term for the different parts of the body is compartments or reservoirs. Treatment stops the virus reproducing but doesn't get rid of it from these reservoirs completely. On treatment, the virus goes dormant, but it can wake up if treatment is stopped. This is why finding a cure is difficult because you need the virus to be awake to do anything to it.

Doctors like to treat people. In your case, with a new infection and high CD4 count, strictly speaking no-one can tell you it's a good or bad idea long term to be on or off treatment now.

If you decide to stop meds you might get 1 year med-free in the worst case, or you might get more than 5 years in the best one. It is more likely to be at the 1-5 year end of the range. No-one can say in advance.

If you decide to stay on the meds, you might feel better than without the pills. Untreated HIV can make you feel very tired and cause other health problems like persisent diarrhea, neuropathy etc etc. No-one can say this in advance either << stating the obvious matt, shut up now

- matt
Title: Re: having thoughts of stopping meds
Post by: J.R.E. on May 12, 2011, 07:59:41 am
Hello, Jake



HIV meds work by blocking the genetic information in the HIV virus at various points. Some do this by stopping the virus getting into your cells in the first place, some do this by interfering with the virus when it tries to copy itself.


Jake,


And here's a short video( animation) explaining some of that. Love the space music...



http://www.youtube.com/watch?v=RUUyd5bE9vQ




Ray
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 13, 2011, 02:22:50 am
The video differently helped.  Newt I pray your right and these are med side effects.  I have to admit I'm flipping out about all this.  Its been less than a year and this rollercoaster ride is taking its toll on me.  Whats not to say the next set of meds won't do the same thing.  Of course the flip side of that is they might work and all will be OK.  What if its not the meds and there is something else going on.  I'm still having a really hard time understanding how my numbers can be so good and still being affected so much.  The whole cluster or reservoir thing is so confusing.  I don't understand why the meds only work in blood but if your body is pumping blood through out how is it stopped in the brain.  This whole process makes me feel so ignorant.   
Title: Re: having thoughts of stopping meds
Post by: edfu on May 13, 2011, 02:43:05 am
The whole cluster or reservoir thing is so confusing.  I don't understand why the meds only work in blood but if your body is pumping blood through out how is it stopped in the brain.  This whole process makes me feel so ignorant.   

Does this help?:

http://faculty.washington.edu/chudler/bbb.html
Title: Re: having thoughts of stopping meds
Post by: newt on May 13, 2011, 04:59:08 am
The side effect anxiety thing is a pain when changing meds, but you will find many, many people here who changed and things got better. Unfortunately the only way to find out is to change. Or stop perhaps for a few weeks to compare before/after. This is a very reasonable option to consider.

ARVS do work in other parts of the body besides blood. They also work, for example, in the central nervous system and genital tract. You can measure this, but it's difficult and intrusive, which is why (like in lots of other other medicine) a blood test is used.

- matt
Title: Re: having thoughts of stopping meds
Post by: wolfter on May 13, 2011, 06:45:04 am
  The whole cluster or reservoir thing is so confusing.  I don't understand why the meds only work in blood but if your body is pumping blood through out how is it stopped in the brain.  This whole process makes me feel so ignorant.   

I certainly am no expert but was recently forced to understand more of this from a layman's understanding.  If I make some incorrect statements, I'm sure I'll be corrected (which I'll appreciate).  The way my doctor explained it to me is that HIV enters the brain through the blood vessels but some of the medications to eradicate this virus aren't successful at reaching some areas.  You can end up with pockets of either live or dead cells.  I ended up with a brain mass that had to be removed.  This membrane is tight and if you have a group of dead cells linked together, they won't be able to cross over and will amass other dead cells.  Mine ended up being a mass of dead cryptococcal cells but it's pretty much the same concept.  We had to wait on the pathology to determine the makeup.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 15, 2011, 09:35:47 am
man you guys are full of information.  (that's a good thing)  So now that I have process this for a few days I have a couple more questions.  How does the process work.  I would guest we will have to taper off one and slowly start another?? 

On this cluster subject.  So say a cluster has died off, does it form something like a cyst or just disappears.  If these clusters are alive, are they just reproducing and just staying out of sight of the meds waiting for the time where there isn't meds in your system. 

What else doesn't the meds work on.
Title: Re: having thoughts of stopping meds
Post by: wolfter on May 15, 2011, 11:05:23 am
They're producing remarkable results with some of the current meds crossing over this membrane and reaching the virus in the brain.  A higher VL is more likely to result in the formation of a mass.  Think of it in terms of filtering a cup of lake water.  What would happen if you had to drain a gallon of water through that same filter?  You'd more likely end up with a clog.  Again, I like the lay understandings.

As far as switching meds?
Title: Re: having thoughts of stopping meds
Post by: newt on May 15, 2011, 11:17:40 am
If you switch meds it's best just to stop one combo and start another immediately. This is to prevent resistance and keep viral load under control. It's not necessary or recommended to have a break unless you have serious side effects that your body needs to recover from.

There are safer ways to stop meds depending on your combo. For example, all protease inhibitors (atazanavir, darunavir etc) can just be stopped outright. But NNRTIs like efavirenz need a tail-off prescription of other drugs to cover the period it takes for it to leave the body. In the case of efavirenz this is because it hangs around at low levels for a week or two, and this can lead to resistance (because the virus has a long enough time to adapt to the presence of the drug).

- matt
Title: Re: having thoughts of stopping meds
Post by: Joe K on May 15, 2011, 12:51:41 pm
Jake,

I already made my comments on your considering stopping meds, but I wish to address your concerns regarding antidepressants. I suffer from clinical depression and my psych drugs are my lifeline to reality, because they correct chemical imbalances within my brain. When they go out of balance, my thinking becomes skewed and I am unable to accurately see my own reality. As I read your words, I am struck by how "anxious" your responses are and I urge you to discuss this with a psychiatrist. Given your situation, I would think your anxiety level must be through the roof and I want you to know that there is help available and it does not have to last forever.

My gut feeling is the anxiety of all of this, is simply overwhelming you and that is perfectly normal. Until it isn't. What I would ask is that you consider some form of medication, on a temporary basis, to help address your anxiety. I know you don't want to take more pills, but sometimes what we "want" to do, is not what we "need" to do. I am a big fan of using medication when appropriate and in treating all aspects of the person. From personal experience, I can tell you that your thought process will become much clearer, when you stop feeling like you want to jump out of your skin.

I also hope that you realize that becoming poz and dealing with the disease is enough for anyone, without adding the burden of starting meds. Your reaction is perfectly normal, however it appears, that your reaction is getting the better of you. This is why I urge you to talk with someone. When our brain malfunctions, even if only temporarily, there are ways to help correct it, so it does not diminish our ability to process information and to make clear decisions.

You are an incredibly strong person and sometimes, true strength, requires that we do things that we do not like, because that is what we require. 
Title: Re: having thoughts of stopping meds
Post by: Lou-ah-vull on May 15, 2011, 08:32:57 pm
What a sensitive and thoughtful and loving post... it is moments like these that I am so grateful for the existence of these forums and the amazing people who populate them!

Gary
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 16, 2011, 03:15:35 am
Jake,

I already made my comments on your considering stopping meds, but I wish to address your concerns regarding antidepressants. I suffer from clinical depression and my psych drugs are my lifeline to reality, because they correct chemical imbalances within my brain. When they go out of balance, my thinking becomes skewed and I am unable to accurately see my own reality. As I read your words, I am struck by how "anxious" your responses are and I urge you to discuss this with a psychiatrist. Given your situation, I would think your anxiety level must be through the roof and I want you to know that there is help available and it does not have to last forever.

My gut feeling is the anxiety of all of this, is simply overwhelming you and that is perfectly normal. Until it isn't. What I would ask is that you consider some form of medication, on a temporary basis, to help address your anxiety. I know you don't want to take more pills, but sometimes what we "want" to do, is not what we "need" to do. I am a big fan of using medication when appropriate and in treating all aspects of the person. From personal experience, I can tell you that your thought process will become much clearer, when you stop feeling like you want to jump out of your skin.

I also hope that you realize that becoming poz and dealing with the disease is enough for anyone, without adding the burden of starting meds. Your reaction is perfectly normal, however it appears, that your reaction is getting the better of you. This is why I urge you to talk with someone. When our brain malfunctions, even if only temporarily, there are ways to help correct it, so it does not diminish our ability to process information and to make clear decisions.

You are an incredibly strong person and sometimes, true strength, requires that we do things that we do not like, because that is what we require. 

This was brought up in both my doctors office and in my therpy.  We all agree that this is situational depression.  You are correct that I could use something to help get threw this hump.  I have thought about this alot.  I truly believe to the core of my being that if we can get all the other crap under control the depression will lighten dramatically.  I am so up thigt about all this because I don't understand so much.  I really thought before I became positive I knew way more than what I do.

I don't want to take pills for something when if we fix the original issue the depression will go away.  OK not away but enough to feel normal.  I feel with counseling and getting on better meds or addressing other issues won't be as bad.   

And yes I don't want to take any more pills.  Right now there are 4 pills for the drug study.  I have two pills to help sleep.  One pill for nausea which I may take twice a day depending on how bad it gets.  NO MORE PILLS. 
I want to stop all.  I want one of these one a day pills.  If my numbers are so high and I have no resistant to anything lets just simplify this process. 

So i ask you guys, what do you take, what are your side effects, what is the easiest one out there.  I think it best to ask those your actually live with them and take them on a regular basis. 
Title: Re: having thoughts of stopping meds
Post by: denb45 on May 16, 2011, 10:39:01 am


  I want one of these one a day pills.  If my numbers are so high and I have no resistant to anything lets just simplify this process.  


Next time you see your ID-doctor that might be something you should ask about, Jake your numbers are stellar, I cannot for the life of me understand why your having so many problems, I couldn't even begin to tell you just how many MEDS I've been on in 23 yrs. having every type of side effect imaginable, it would just take way too long, and my memory just aint as good as it used to be, I'm 54 yrs. old, I got teh AIDS when I was 30 yrs old   ;)
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 24, 2011, 11:31:24 pm
So tomorrow morning is the next doc visit where we finally make some decisions.  I still am torn right down the middle on what to do here.  When i really stop and think about this I really want to stop and as others have said just keep an eye on my numbers.  I really believe what I'm feeling has to be the pills.   

So sorry to keep hounding this issue but here's my last question.  I asked that anyone who was on meds and stopped how do you feel.  How long did you go off or our you still off and do you regret or liked the decision you made.  My family and friends have wade in and they all vote to change meds but to stay on them.  I feel it is easy for them to say that.  I really want to make the right decision. 

Thanks as always

jake
Title: Re: having thoughts of stopping meds
Post by: Jeff G on May 24, 2011, 11:59:18 pm
So tomorrow morning is the next doc visit where we finally make some decisions.  I still am torn right down the middle on what to do here.  When i really stop and think about this I really want to stop and as others have said just keep an eye on my numbers.  I really believe what I'm feeling has to be the pills.  

So sorry to keep hounding this issue but here's my last question.  I asked that anyone who was on meds and stopped how do you feel.  How long did you go off or our you still off and do you regret or liked the decision you made.  My family and friends have wade in and they all vote to change meds but to stay on them.  I feel it is easy for them to say that.  I really want to make the right decision.  

Thanks as always

jake

I have found that my trust in my doctor makes these decisions easier for me . If your doctor told you that you need to be on meds and you trust him I would give great weight to that . If your doctor is advising you to be on meds and still don't want to take them I would seek some counseling to help you sort out how you feel before I stopped taking them .

I guess what Im trying to get at is your appointment is tomorrow but you don't have to make a decision unless you are ready to do so , if you continue to do as your doctor advises you then you still have time to sort through this  . Good luck .    
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 25, 2011, 12:12:05 am
We all know what the doctor is going to say.  That's why I want to hear from you guys.  I know the depression is apart of this.  I recognize that and it really comes down to the side effects of this regiment and really phycially feeling like crap.  If the numbers are so high it really can't hurt going off for a bit and just keeping a close eye on things.  Am i kidding myself or is this a realistic thought.
Title: Re: having thoughts of stopping meds
Post by: Jeff G on May 25, 2011, 12:20:32 am
We all know what the doctor is going to say.  That's why I want to hear from you guys.  I know the depression is apart of this.  I recognize that and it really comes down to the side effects of this regiment and really phycially feeling like crap.  If the numbers are so high it really can't hurt going off for a bit and just keeping a close eye on things.  Am i kidding myself or is this a realistic thought.

I do understand you are having side effects from you medicine but for me the real issue is if your doctor is certain you need to be on them and you want to quit  then maybe go and get a second opinion . There is no way to sugar coat it , if you need to be on meds and choose not to take them it will catch up to you .   
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 25, 2011, 12:31:10 am
The 'LOTTI' study showed that people currently on HAART with a CD4 cell count of 700 or more, and who took a treatment break, had the possibility of a break of between 1 and 13 years before they had to consider restarting (when CD4 was at or below 350, or they developed illness earlier), and that the prospects were excellent.
The LOTTI study proves that it is people stopping meds on a CD4 count of significantly *less* than 700 *and* who had coinfections, *and* who had a previous history of illness for whom a treatment break was a risk.

The LOTTI study is clear - for those finding HAART is causing a significant reduction in quality of life, and who have stable VL and a CD4 count of 700 or more, and who do not have Hep B/C coinfections and no previous history of illnesses, the prospects for a treatment break are excellent. In fact, there are many 1000s of HIV+ people who have done just that with great success.

LOTTI Study:
http://www.aidsmap.com/Treatment-breaks-set-for-a-come-back/page/1432432/
http://www.natap.org/2009/HIV/042009_02.htm
Maggiolo F et al. CD4-guided STI in patients responding to HAART. Ninth International Congress on Drug Therapy in HIV Infection, Glasgow. Abstract O213. 2008.
Title: Re: having thoughts of stopping meds
Post by: buginme2 on May 25, 2011, 02:33:52 am
We all know what the doctor is going to say.  That's why I want to hear from you guys.  I know the depression is apart of this.  I recognize that and it really comes down to the side effects of this regiment and really phycially feeling like crap.  If the numbers are so high it really can't hurt going off for a bit and just keeping a close eye on things.  Am i kidding myself or is this a realistic thought.

Really? You know what the doctors are going to say but instead you want to get your medical advise from a bunch of strangers on an internet forum?   Just because everyone here has HIV does not make them experts at providin medical care. 

That would be like having something wrong with gour car and your mechanic telling you what needs to fix the problem but instead you ask people in your book club what they think because they all have cars too. 
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on May 25, 2011, 03:13:29 am
Jake I feel like you've already come to a determination and you're simply looking for someone to back you up on your foregone conclusion.  If you think the meds are rough now, what will you do when you have to be on them and don't have the luxury of stopping?
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 25, 2011, 03:57:47 am
The facts in this case are far more straightforward than virtually any of the replies here show.

1. The OP should probably never have been put on HAART to begin with. The medical tests did not warrant it.
2. The OP has indicated they have gone from a well, happy, healthy person to somewhere a long way from that in the space of much less than a year.
3. The LOTTI treatment interruption clinical trials clearly indicate that the OP is a perfect example of someone who has one of the best chances of being able to be off HAART for anything up to more than a decade to come.

So instead of replies that treat the matter as if it is black and white - being on HAART is *always* the best and *only* option and once on must never stop (when that is simply not the case and grossly inaccurate) - and try an look at it a little more maturely and a lot less defensively. Unfortunately, the underlying unspoken message in this thread is 'we're on them and we can't risk coming off them, so why should he!!!'

There are literally 1000s and 1000s of HIV+ people who are not on HAART because they have stopped successfully, and many 1000s who have never started them and been healthy and successful. But virtually none of those people (and many 10s of 1000s who are on HAART) who will never come to this forum for a variety of reasons but commonly one reason being the bulk of the content of this thread.
Title: Re: having thoughts of stopping meds
Post by: edfu on May 25, 2011, 04:18:27 am
There are literally 1000s and 1000s of HIV+ people who are not on HAART because they have stopped successfully, and many 1000s who have never started them and been healthy and successful. But virtually none of those people (and many 10s of 1000s who are on HAART) who will never come to this forum for a variety of reasons but commonly one reason being the bulk of the content of this thread.

So, what's your excuse? 
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 25, 2011, 04:21:04 am
So, what's your excuse? 

I think there should always be room for a variety of opinions.

Why? DON'T YOU?
Title: Re: having thoughts of stopping meds
Post by: mecch on May 25, 2011, 05:56:09 am
There are literally 1000s and 1000s of HIV+ people who are not on HAART because they have stopped successfully, and many 1000s who have never started them and been healthy and successful.
They are, until they aren't healthy, and then allez oop HAART.

In constast, there are many who stopped and damaged their health.  Many who waited too long to start.  

Your stats are vague, meaningless and used to make your argument. An argument which most everyone understands and yet it changes the world view of no one.  So you go after newbies, the wavering, etc.

But virtually none of those people (and many 10s of 1000s who are on HAART) who will never come to this forum for a variety of reasons but commonly one reason being the bulk of the content of this thread.

Conjecture.  A load of garbage.  You have surveyed "non members"?  

Matt39 - beacon of brilliance in the fog of ignorance that is HIV treatment.  Heroic fighter for truth.  Trusted collaborator of world famous scientific researchers.  Keen scientific literacy, acute amateur epidemiologist.  

If he can save but one sad, ignorant, badly treated HIV+ soul, from but one brief moment of unnecessary HAART hell, it will have all been worth it.

.......What's that sound...........

Its a telephone........  Chairmen of Infectious Disease at Cornell Med.  Matt, its for you!  

There's a research fellowship awaiting.  Sole condition, you must jump on a plane and stop ALL your current activities and dedicate 100 percent of your time to the lonely heights of research.  Your time is too precious, sadly wasted on the hoi poilloi.  Its imperative, drop everything, please come immediately, science needs you!



Title: Re: having thoughts of stopping meds
Post by: newt on May 25, 2011, 08:36:28 am
Quote
We all know what the doctor is going to say.  That's why I want to hear from you guys.  I know the depression is apart of this.  I recognize that and it really comes down to the side effects of this regiment and really phycially feeling like crap.  If the numbers are so high it really can't hurt going off for a bit and just keeping a close eye on things.  Am i kidding myself or is this a realistic thought.

This is realistic. You started treatment in the early stages of having HIV* and your CD4 count is within normal range. Just keep a regular eye on it.

If you do stop, whether you get some months, 1 year or 5-10 years before your CD4 count falls to a point where you think treatment is right is a moot point. It's very variable this. It may be an idea to settle with yourself on your conditions for re-starting treatment, like at what CD4 count, with what meds, other circumstances that you consider important etc, rather than expect a certain length of time without meds and be disappointed.

And you can always change your mind :-)

- matt


* very unusual
Title: Re: having thoughts of stopping meds
Post by: Matt39 on May 25, 2011, 09:19:56 am
They are, until they aren't healthy, and then allez oop HAART.
In constast, there are many who stopped and damaged their health.  Many who waited too long to start.  
Your stats are vague, meaningless and used to make your argument. An argument which most everyone understands and yet it changes the world view of no one.  So you go after newbies, the wavering, etc.
Conjecture.  A load of garbage.  You have surveyed "non members"?  
Matt39 - beacon of brilliance in the fog of ignorance that is HIV treatment.  Heroic fighter for truth.  Trusted collaborator of world famous scientific researchers.  Keen scientific literacy, acute amateur epidemiologist.  
If he can save but one sad, ignorant, badly treated HIV+ soul, from but one brief moment of unnecessary HAART hell, it will have all been worth it.
.......What's that sound...........
Its a telephone........  Chairmen of Infectious Disease at Cornell Med.  Matt, its for you!  
There's a research fellowship awaiting.  Sole condition, you must jump on a plane and stop ALL your current activities and dedicate 100 percent of your time to the lonely heights of research.  Your time is too precious, sadly wasted on the hoi poilloi.  Its imperative, drop everything, please come immediately, science needs you!

You argue against a viewpoint you don't like. You use no scientific or medical arguments. You ignore statistics from the USA alone which show that less than 60% of HIV+ people are currently on adherent HAART. You ignore the statistics that indicate they are not dying in any greater numbers than at *any* time since triple combination therapy was introduced.
In other western countries even fewer HIV+ people are on adherent HAART. Again, they are not dying in any greater numbers than at any time since triple combination therapy was introduced.
You ignore statistics that show outside of the USA, in the west, those that do go on HAART commence at a significantly later point yet illness rates and death rates are most definitely not worse, and cohort data indicates they are probably lower but the 'START' trials will confirm that.

The attitude that it's 'all black and white' is not only clinically and scientifically unsustainable but it is also born of a defensiveness that comes of the herd mentality and 'if we're on them then you should be too!'.

It's an attitude that does no one any favours and certainly doesn't offer the kind of information-rich but, crucially, *UNCONDITIONAL* support that one poz person should give to another. In that regard this forum often fails those who don't see things through a very particular, narrow and blinkered view.
Title: Re: having thoughts of stopping meds
Post by: GSOgymrat on May 25, 2011, 10:20:53 am
We all know what the doctor is going to say.  That's why I want to hear from you guys.  I know the depression is apart of this.  I recognize that and it really comes down to the side effects of this regiment and really phycially feeling like crap.  If the numbers are so high it really can't hurt going off for a bit and just keeping a close eye on things.  Am i kidding myself or is this a realistic thought.

I get the impression that you have already made up your mind.  You are an adult, you have the facts, you know the possible risks and benefits and if you decide to stop medication against medical advice because you believe it will make you feel better you have that right. Our advice shouldn't preempt that of your doctor. You won't get unanimity on this forum but, not matter what you choose, you will get support.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 25, 2011, 10:46:38 am
I will listen to my doctor.  im not looking for approval on my decistion   I am wanting honest feed back from any that has been threw this and made this decision.  WelL i am leaving now for the doctor and will let you all know in a few hours.  thanks


Title: Re: having thoughts of stopping meds
Post by: Joe K on May 25, 2011, 11:17:54 am
You argue against a viewpoint you don't like. You use no scientific or medical arguments. You ignore statistics from the USA alone which show that less than 60% of HIV+ people are currently on adherent HAART. You ignore the statistics that indicate they are not dying in any greater numbers than at *any* time since triple combination therapy was introduced.
In other western countries even fewer HIV+ people are on adherent HAART. Again, they are not dying in any greater numbers than at any time since triple combination therapy was introduced.
You ignore statistics that show outside of the USA, in the west, those that do go on HAART commence at a significantly later point yet illness rates and death rates are most definitely not worse, and cohort data indicates they are probably lower but the 'START' trials will confirm that.

The attitude that it's 'all black and white' is not only clinically and scientifically unsustainable but it is also born of a defensiveness that comes of the herd mentality and 'if we're on them then you should be too!'.

It's an attitude that does no one any favours and certainly doesn't offer the kind of information-rich but, crucially, *UNCONDITIONAL* support that one poz person should give to another. In that regard this forum often fails those who don't see things through a very particular, narrow and blinkered view.

I find that nothing good comes from generalizations, nor from slamming an entire forum because of the views expressed within one thread. As I read your replies, you seem to be the one insisting that the OP do what YOU believe is right, rather than simply stating your opinion. You also seem unable or unwilling to understand that everyone has a right to express their own views and that is what the OP asked us to do. Personally, I find your responses to be rather offensive as you are unable to see any view that is not your own.
Title: Re: having thoughts of stopping meds
Post by: Buckmark on May 25, 2011, 11:32:13 am
So tomorrow morning is the next doc visit where we finally make some decisions.  I still am torn right down the middle on what to do here.  When i really stop and think about this I really want to stop and as others have said just keep an eye on my numbers.  I really believe what I'm feeling has to be the pills.   

So sorry to keep hounding this issue but here's my last question.  I asked that anyone who was on meds and stopped how do you feel.  How long did you go off or our you still off and do you regret or liked the decision you made. 

Jake,

There haven't been a lot of responders to your specific question about those who were on meds at one point, and then stopped.  Perhaps you've received private messages rather than public responses.  But my feeling is that the overwhelming approach these days is that once you start meds, you continue to take them.   This doesn't necessarily have to be your approach -- it is your choice.  It is my choice.  I was also fortunate enough to be able to wait 15 years before starting meds (slow progressor, evidently), when I had many more options.  But both me and my doctor knew when it was time for me to start, and I have to admit that my physical health did improve once I started meds.  Again, that's my experience.

I'll be interested in hearing what decision you make after your appointment with your doctor.  If you do decide to stop meds, you must monitor your CD4 and viral load very carefully.   You should also monitor your symptoms to see if they go away, and be prepared to explore other options if they don't.

Regards,

Henry
Title: Re: having thoughts of stopping meds
Post by: David Evans on May 25, 2011, 11:58:14 am
Matt

You've stated your case repeatedly and in engaging in this constant back and forth you have essentially hijacked this thread. I am not trying to be the thought police nor shut down debate. You are more than welcome to start a new thread on this topic if you choose, but I am going to ask you (and all those responding to Matt) to ease off in this thread. Jake says he's going to his doctor and that he'll report back. At this point, you're all mostly arguing back over the same thing again and again and I doubt you're adding much to his deliberation process. In his last post, he says he wanted to hear about people's EXPERIENCES.

Thus, if you've got some experience in either thinking of going off meds, or having gone off meds, then by all means share it. If you've got a strong opinion on the merits of treatment interruptions then perhaps start a new thread on that topic and simply post a link to it in this thread so that those who wish to can follow it.

David
Moderator
Title: Re: having thoughts of stopping meds
Post by: gemini20 on May 25, 2011, 01:11:04 pm
I’m someone who has regularly stopped and restarted meds since I became infected 20 years ago so can speak from the perspective of someone who has done what you are considering.

For the first 8 years after infection I did not take any meds; my CD4 count averaged 508 (26%) over that time and viral load (which didn’t start getting measured until 1998) averaged only 11,500.

I began meds in October 1999 and since then this is how often I’ve been off and on meds:-
 
October 1999 – February 2000             On meds
February 2000 – April 2004                 Off meds
May 2004 – October 2005                   On meds
October 2005 – October 2007               Off meds
October 2007 – July 2009                 On meds
August 2009 – September 2009              Off meds
September 2009 – March 2011              On meds
March – April 2011                     Off meds
Currently                                 On meds

Apart from a bout of bacterial pneumonia in 2003 I have not experienced any significant health problems in subsequent treatment breaks and as far as I know I haven’t developed any resistance either. I did experience one IRIS episode when restarting meds the first time but not since. I have worked full time throughout my 20 years of living with HIV so on meds or off meds it hasn't affected my day to day life.

As you will see in recent years the amount of time I've been able to stay off meds has diminished considerably and this has largely been down to significant drops in CD4 count e.g. in 2009 I went from over 700 to 159 in the month I was off meds; though viral load never really rebounded very high.

Everyone's experiences are personal and unique to themselves so it is impossible to say what will or won't happen if you stop but as long as you take personal responsibility for the decision you make then other people's thoughts or opinions shouldn't influence you.

I hope that helps,

Emma

Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 25, 2011, 05:09:15 pm
OK here we go.  Turns out even with being on testosterone gel that my levels have just crashed.  I'm now at 208.  Doctor says that is the reason for the mental fog, lost of energy and the feelings depression.  They took more blood to try to figure out why my feet are swelling and I don't want to say hurting but tingling, because they just had me start doubling the testosterone gel she wants to wait another week to see how I feel before making the decision  to change meds. 

I filled them in on my thinking about stopping and again they augured against.  But then the words I needed to hear came out.  I can fix how your feeling and have you on meds.  Those were the words I been yearning to hear.  So another week of waiting. In the mean time some nausea pills to help with the meds because the one thing I can't deny is that my numbers are amazing with these meds.  CD4 now up to 1200 41% and still ud.  It is truly amazing in 9 month es that CD4 now has doubled. 

With all that said I'm so hoping that all this is from the testosterone levels being low or as the doc said a trainwreck.  I just know I can't go on feeling sad, extremely tired (fuck I'm tired), and the mental fogginess.

So with all that said if we can make me feel normal and be on pills i will stay on them.  Hell actually getting use to the nausea.

The reason for this post was to ask about personal experience or insight on the subject.  Not to justicy a thought I have in my head, to make my decision for me, or not to make a decision.  I am really using these forums as a reference and to find friends.  Which I feel I have found both here. 
Title: Re: having thoughts of stopping meds
Post by: wolfter on May 25, 2011, 05:13:32 pm
I'm glad you rec'd some encouraging words from your doctor.  Hope it all works out.

Greg
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on May 25, 2011, 05:28:11 pm
It was nice.  I'm just finding it a reality check that meds don't fix everything.  I have to say I am so amazed that the meds are doing so good but the virus can still cause so many issues.  I ask the doc I don't understand why these levels are dropping off so bad if the numbers are so high.  He just answers its a complicated disease.  I guess the reality of having this is really settling in.  Not a woe is me moment just a wow moment.  That there isn't a more difined answer.  Is this something I should just get used to hearing.  It is also amazing that we know so much about it and at the same time so little
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 01, 2011, 03:32:24 pm
So Finlay a update on this front.  My doctor just called and good news all around.  They spoke to the drug study people and they are allowing me 2 weeks off the meds to see how I feel.  This will allow me and the doctor to see if the fatigue I am feeling is meds related or something else.  If in two weeks I still feel the same I go back on my current regiment, stay in the study, and then go see a hormone specialist.  If in two weeks I feel better we will switch to a regiment and go from there.  I have to say I am excited to see how I will feel off these things.  Either way I feel like its a step in the right direction. 
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 06, 2011, 12:05:16 am
OK so i have way too much time on my hands and I sit around thinking.  This is the question that just popped in my head.  So I know stopping meds will allow the virus to start back up again. does that mean that ( or probably will be) a initial....  I don't know how to say this but like shitty feeling that will come before it levels back off.  For anyone that has done this what was your experience like just out of curiousness. 
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on June 06, 2011, 12:16:01 am
OK so i have way too much time on my hands and I sit around thinking.  This is the question that just popped in my head.  So I know stopping meds will allow the virus to start back up again. does that mean that ( or probably will be) a initial....  I don't know how to say this but like shitty feeling that will come before it levels back off.  For anyone that has done this what was your experience like just out of curiousness. 

You're under the mistaken impression that meds or the virus will immediately(or ever) make you feel poorly.  You decided to go off of the treatment you were on and said you're feeling great however the two may have nothing to do with each other.  Very little when dealing with this virus is definite and as for blanket statements about the effects of HIV short term and the side effects of meds on two people are a set up for failure.  I personally began to feel a lot better only once I was on medication.  After 2 weeks on meds I began to feel human once more although still quite weak for a while.

The only thing you can do is monitor your health via your labs and gauge how you feel from day to day.  You've only been off of meds for like a week right?  I doubt there's been much time for viral growth considering the meds probably aren't even completely flushed from your system yet.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 06, 2011, 01:09:29 am
Agreed I still feel fantastic it was just one of those fluttering thoughts.  Why not ask.  Also I know its different from person to person but with that said I'm still interested just in general what others have experienced.  I also find the stories are all different but the bottom line the since of connection I feel from hearing others stories. It at times helps me to mentally brace myself for things I haven't thought of instead of it just popping up out of the clear blue.  I have learned by asking questions here it gives me questions to ask the doctor.  Still all new and just always have a million questions running around up there. 
Title: Re: having thoughts of stopping meds
Post by: bmancanfly on June 06, 2011, 10:02:08 am
I know you've stopped meds but what is your plan going forward?

Have you found a ID doc outside the research study?

How often are you planning on having bloodwork done?

Have you giving any thought to when you will initiate HAART again?  i.e. What CD4 count/VL loan number?  And with what meds?

Just curious.



Title: Re: having thoughts of stopping meds
Post by: AlanBama on June 06, 2011, 11:53:20 am
Jake, I just want you to know that I fully support you in whatever decision(s) you make, regarding treatment.   It is a very personal thing, and I think you are wise to get other's opinions, but first and foremost, rely on your doctor.   Now, if you're not happy with your doctor, that is another subject, for another topic !

Let me just throw this out as "food for thought".   Since 1988, I have taken truck-loads of pills.  Right now, I take about 25-30 each day, including vitamins and supplements.    So for me, it's not really about the 'number of pills', but how the drugs are working for me.  My experience has been that with most drugs, there is a "trade-off".   If you take something for depression, it can make you feel 'numb' or without emotion; if you take something for neuropathy, it may cause a headache; if you take something for blood pressure, it may cause you to feel dizzy at certain times.   For me, everything is a trade-off, between how well is it working vs. the "manageable" side effects.   Some things, I don't have a choice about (like my HIV meds, or my heart meds)  Some things, I do.   I choose not to take anything for neuropathy, because I can deal with it, and would rather deal with it than the side effects.   Most of the time, I choose not to take anything for nausea, because it makes me sleepy and tired.

This is all stuff that you will figure out on your own, in time.   You're doing the right thing, asking for opinions and suport, and following your doctor's best advice.

HUGS, Alan
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 06, 2011, 12:37:19 pm
The doctor just called and ask how is everything.  6 days and feeling better each day even to the point when I'm done writing here I'm going hiking today.  First time this year.  I have to admit last night when I jumped on here and asked a question it hit me kinda hard "shit what else am I not thinking about".  So bmancanfly asked some good question and here's what I've come up with.  I have had a ID doc since I found out.  Its a doc. I trust and feel they care. We both agreed today I will not be going back to the study.  I am to go in once a month they said for 3 months to get labs done.  Then after 3 months depending how they are i get to go to once every 3 months.  My mental plan (because we will have to see what reality does) is too stay off till my CD4 hits 500.  I never really given any thoughts to viral load.  I feel kinda stupid asking but from what I am learning its all about the CD4 count, so should there be a red flag getting to a certain viral load number.  As I type this I am thinking wow something so obvious of a question.   

Man o man I am getting a lot of shit from my family and close friends who know of the situation.  (non are +)  Its hard for me to listen to their advise because it comes more from fear (which i feel horrible adding to their lives)  not one of quality of life.  Guys and gals for the last 9 months I honestly felt like crap.  This last week has been a god send to know I don't have to feel that way.  Granted I didn't think not taking anything was a option.  But he res the next question.  Is it OK to wait to see a CD4 of 500 before moving forward again on meds and is there a viral load number I should keep in mind as well.  As always thank you.  Peace out I'm going into the mountains now.  yeaaaaaaaaaa
Title: Re: having thoughts of stopping meds
Post by: newt on June 06, 2011, 01:19:18 pm
Quote
Is it OK to wait to see a CD4 of 500 before moving forward again on meds

Yes. A CD4 of 500+ is normal. Plus taking into account how you feel in your body, other health problems etc, this is also important.

Some people will say there is merit in looking at viral load, but personally, I read the benefit of taking this into account as marginal. An active virus, particularly at high level, can make you feel tired, and this may be something practical you want to bear in mind if it comes to pass.

Enjoy the hiking :-)

- matt
Title: Re: having thoughts of stopping meds
Post by: bmancanfly on June 06, 2011, 01:36:50 pm
Jeepguy,

That sounds like a good plan.  Follow that plan and I think you'll be fine.

Enjoy the mountains and put HIV out of your mind  - for a little while. 

But stick to that plan.   ;)
Title: Re: having thoughts of stopping meds
Post by: buginme2 on June 06, 2011, 02:08:59 pm
I'm sure there are different views about viral loads however, I have read that regardless the number of cd4's a high viral load of greater than 100,000 is reason to initiate therapy.  But like i said im sure there are different views on that.
Title: Re: having thoughts of stopping meds
Post by: newt on June 06, 2011, 05:57:03 pm
US guidelines don't mention viral load they say:

• Antiretroviral therapy (ART) should be initiated in all patients with a history of an AIDS-defining illness or with a CD4 count <350
• ART is also recommended for patients with CD4 counts between 350 and 500
• ART should be initiated, regardless of CD4 count, in patients with the following conditions: HIV-associated nephropathy and hepatitis B virus coinfection when treatment of HBV is indicated << shame they didn't mention hep C, TB or older age/risk of heart disease
• A combination antiretroviral (ARV) drug regimen is also recommended for pregnant women who do not meet criteria for treatment with the goal to prevent perinatal transmission
• For patients with CD4 counts >500, panel members are evenly divided: 50% favor starting ART at this stage of HIV disease, 50% view initiating therapy at this stage as optional
• Patients initiating ART should be willing and able to commit to lifelong treatment and should understand the benefits and risks of therapy and the importance of adherence, patients may choose to postpone therapy, and providers, on a case-by-case basis, may elect to defer therapy based on clinical and/or psychosocial factors.

Some people say, but the research doesn't justify (or it would be in the guidelines).

- matt
Title: Re: having thoughts of stopping meds
Post by: red_Dragon888 on June 15, 2011, 12:55:12 pm
which meds were you taking?
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 15, 2011, 05:29:41 pm
I can't remember right off the top of my head what I was taking.  It is some where in this thread.  What I do know is I feel like a c
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 15, 2011, 05:43:24 pm
Sorry hit the wrong button. What i was going to say is I feel like a completely different person off those things. No more nausea, fatigue, muscle aches, and depression. My head is finally clear and I feel great. Doc and I agreed that I will just stay off meds  till I hit the 500 mark. I'm really hoping with my CD4 at 1200 it will be at least a year before I have to start again. I will get labs done again the first week of July and I will let you know how it goes.
Title: Re: having thoughts of stopping meds
Post by: red_Dragon888 on June 16, 2011, 08:41:11 pm
Sorry hit the wrong button. What i was going to say is I feel like a completely different person off those things. No more nausea, fatigue, muscle aches, and depression. My head is finally clear and I feel great. Doc and I agreed that I will just stay off meds  till I hit the 500 mark. I'm really hoping with my CD4 at 1200 it will be at least a year before I have to start again. I will get labs done again the first week of July and I will let you know how it goes.
sometimes bad meds combos are bad meds combos.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 17, 2011, 01:07:02 pm
I agree but the whole experience just left me somewhat gun shy of starting another regiment until I have too
Title: Re: having thoughts of stopping meds
Post by: bmancanfly on June 17, 2011, 03:56:56 pm
Didn't you also change your Androgel dosage at about the same time you stopped meds?
Title: Re: having thoughts of stopping meds
Post by: Miss Philicia on June 17, 2011, 04:10:21 pm
I think it's been over two weeks since Jake stopped his medication -- why is everyone re-litigating the issue? He made his decision, and it was all discussed for like a month in another thread before he actually stopped. At some point people need to respect his decision whether or not you would have chosen to do the same thing.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 17, 2011, 04:43:38 pm
I stop everything at once. Was off everything for 2 weeks and doc said I had to go back to taking androgel because they said my testosterone levels are dangerously low which could cause other problems. So has of right now I take a double dose of that gel and that's it. 
Title: Re: having thoughts of stopping meds
Post by: bmancanfly on June 17, 2011, 04:47:35 pm
Androgel made a world of difference for me. 

I hope it helps.
Title: Re: having thoughts of stopping meds
Post by: Ann on June 18, 2011, 08:42:53 am
At some point people need to respect his decision whether or not you would have chosen to do the same thing.

I totally agree. What many seem to be forgetting is that Jake's situation is quite different to many here - namely that he started meds early on in his infection with excellent numbers. He didn't need to start when he started and there's no good reason why he can't take a break.

I think I said previously either in this thread or the other one on this subject, that there have been many pregnant women who started with excellent numbers - only for the sake of the child - and stopped meds after the birth. The women I know who have done this have had no problems and many were able to go for years with good numbers, without re-starting meds.

Stop the panic already! Jake plans to keep monitoring his numbers. It may be quite some time before he needs meds again, or he may need them in the next year or two. He'll try again when he needs to - at least that's what I get from all that he has written about his situation.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on June 20, 2011, 03:50:57 pm
Ann you are right when I need too yes I will pick another regiment and go back on. I'm really curious to go back and the next set of numbers now off meds.  I am curious to see how fast or slow they start to fall. Keeping fingers crossed that it will be slow.

So I have a new question. If some pills are this or that isn't it always best to be on some type of cocktail to block it from growing in all 3 ways. So besides atrpila ( sorry if that's not spelled right). What other one a day pills are there.
Title: Re: having thoughts of stopping meds
Post by: Assurbanipal on June 20, 2011, 04:34:27 pm
Atripla is the only once a day single pill currently on the market but there will probably be one or two others by the time you start.

And there are a number of once a day combos if you are willing to swallow a few pills instead of just one.  Either Truvada and Epzicom are once a day pills with two drugs.  Then you just add a thrid drug like Rilpivirine, Viramune, Reyataz, Viramune ... (lots of options)
Title: Re: having thoughts of stopping meds
Post by: newt on June 20, 2011, 04:39:38 pm
There are lots of 1 x day combinations. They all work. Even tho they are more pills.

The marketing trick pulled off by Atripla makers BMS and Gilead was to get three meds in one tablets.

But, 1 x day with more meds is not automatically less convenient, it just appears so I reckon. They go down simple enough in one fell swoop.

Viramune XR (if your CD4 count is low enough when you start), Reyataz and Prezista to start are genuine 1 x day backbones for an effective combo (need to add 2 nukes to these). Some others work 1 x day too for most people.

The reason a combination of at least 3 drugs from 2 classes is used is to prevent resistance. HIV evolves rapidly, and having just 1 class of meds attacking it allows it to adapt to the environmental pressure. Therefore treatment eventually stops working. 3 meds from 2 different classes used together overcome this.

Some people can manage with 2 meds from 1 or 2 classes, and some with 1 med from 1 class* (when the virus has been put to sleep, ie "undetectable" for some months). A few people will need an extra med** (prob, alas AZT or, better, a new one like Isentress etc) to reach the benchmark consistent viral load of 50 copies or less.

The future holds the serious possibility of a range of new delivery mechanisms*** and pharmokinetic enhancers to allow lfor ess meds less often, so even with existing compunds the convenience factor for ARVs looks good****.

- matt


* Some boosted PIs to be specific
** or higher dose of 1 particular med
*** this includes d4T and efavirenz, and things like monthly implants etc
**** this prob also means lower doses and biologically better targetted therapy which means less side effects for the same benefit
Title: Re: having thoughts of stopping meds
Post by: Miss Philicia on June 20, 2011, 04:47:15 pm
Atripla is the only once a day single pill currently on the market but there will probably be one or two others by the time you start.

Hmmm... that is if the massive DoJ criminal probe of Gilead announced late Friday doesn't foul things up :)
Title: Re: having thoughts of stopping meds
Post by: Buckmark on June 20, 2011, 10:46:22 pm
Hmmm... that is if the massive DoJ criminal probe of Gilead announced late Friday doesn't foul things up :)

What's scary about this probe of Gilead is that it is criminal, not civil.  Apparently it is related to the quality of their manufacturing and distribution processes, practices, and facilities.   ???
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on June 21, 2011, 02:09:29 am
What's scary about this probe of Gilead is that it is criminal, not civil.  Apparently it is related to the quality of their manufacturing and distribution processes, practices, and facilities.   ???

FML
Title: Re: having thoughts of stopping meds
Post by: red_Dragon888 on June 21, 2011, 05:24:28 pm
I am going through the same thing.  My doctor had put me on an aggressive treatment and it left me almost disabled.  Now I have stop med until i see him again and do the old HIV combos that worked without side effects.   My right hand, which blew up like a ballon, is just coming back to function, I still have "water on the knees," and my feet also retains liquid which makes it hard to walk and to do my normal activities. 

I do not think being off meds is bad as long as it is temporary, and that so want to get back on it before my viral load goes up or my cd4 goes down.  At the last blood test, cd4 was 600 and vl undetectable. 

My problem is that before all this happened, I felt healthy and happy with the meds I was on.  Now after the changed in combos, I am left practically handicapped.  I have to see a orthopedic to find a way for me to regain full use of my limbs. 

Life sucked two weeks ago, but now the problems have lessen and I have confident that I will recover. 
Title: Re: having thoughts of stopping meds
Post by: red_Dragon888 on June 21, 2011, 05:41:58 pm
Is there any site that tells of HIV combos that worked and are popular?
Title: Re: having thoughts of stopping meds
Post by: buginme2 on June 22, 2011, 01:08:22 pm
Is there any site that tells of HIV combos that worked and are popular?

Any of the approved regimens work, there is a listing here on Aidsmeds.  As far as whats popular, its quite individual.  Im on Atripla and do fine with it.  Some people don't like it.
Title: Re: having thoughts of stopping meds
Post by: red_Dragon888 on July 07, 2011, 06:58:07 am
Well, I'd tried not taking meds for a week and I forgot that I have lost all defense to HIV.  I lost a lot of weight in that week and boom, that was the first sign that my body was in jeopardy of losing the battle.  So I started the meds again, regain a lot of my weight and will see the doc today to make sure that I am healthy.  Be very careful for if you do not have something in your body to defend against the HIV, your body may go fail quickly.
Title: Re: having thoughts of stopping meds
Post by: buginme2 on July 07, 2011, 07:21:50 am
Well, I'd tried not taking meds for a week and I forgot that I have lost all defense to HIV. 

No shit Sherlock.  Really? What a dangerous thing to do.  You realize you open yourself to resistance issues when you decide to stop taking your meds. 
Title: Re: having thoughts of stopping meds
Post by: red_Dragon888 on July 07, 2011, 08:04:39 am
No shit Sherlock.  Really? What a dangerous thing to do.  You realize you open yourself to resistance issues when you decide to stop taking your meds.  
I guess some wake up angry, but I do take responsibility for my stupid actions.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on July 07, 2011, 06:05:11 pm
So a update. Been off meds now roughly over a month.  Went yesterday for a check in and received my numbers from 2-3 weeks ago and my CD4 was 1081 46% and viral load still undectable. I will get my numbers for the next week for the month plus a week off meds. Doc said to expect to see a drop in those numbers. We will have to see. But I am amazed at how much better I feel off those things. The only problem I am having is my testosterone levels still falling. Now under 100. So starting this week time to start testosterone injections.  :-(. Not happy about that one.
Title: Re: having thoughts of stopping meds
Post by: Joe K on July 07, 2011, 06:59:20 pm
Jake, those are great numbers and it's nice that you feel so much better. As for your testosterone supplements, if you notice large mood swings from the shots, you may be able to use a topical version. You have to apply it each day, but you get a steady dose and don't have the wide mood swings.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on July 07, 2011, 09:50:28 pm
I have been taking Adrogel but my insurance decided they are not going to cover it anymore. So doc switched to another gel and with my insurance my copay is 500.00. Well that isn't going to work. So for a month supply of the shot is only 80.00 with my insurance and well it looks like I don't have a choice. Not only that I have been on the gel for about 2 months and my levels are still falling.  For some strange fucked up reason my HIV loves testosterone. It really sucks. I feel like my manhood is under attack. Already stopping the gel for a week I feel the fatigue starting to settle back in.  I'm not looking forward to a weekly shot in my leg but once again I feel as thow I have no choice. But to get back to the original topic being off meds my numbers have remained pretty strong.  I will update you guys next Tuesday when I get the one month off meds numbers. I have to admit I'm on pins and needles hoping they haven't dipped too much because I would like to ride this med free train for a while.
Title: Re: having thoughts of stopping meds
Post by: WillyWump on July 07, 2011, 09:51:11 pm
congrats on the numbers! glad your feeling better.

btw, Ive been on Test injections for about 9 mos now, was on test patch for about a year prior to that. Jsut recently got my levels up to normal after starting at 32. You should see a difference in your energy etc..pretty quickly with the injections.

Good luck

-Will
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on July 12, 2011, 08:29:11 pm
Well  I learned today stopping meds does have it's cost. Cd4 went from 1081 to 797 in one month. Vrl load hasnt come back yet so it looks like I don't get to ride the med free train for very long.  Nothing else to say
Title: Re: having thoughts of stopping meds
Post by: Ann on July 12, 2011, 09:31:34 pm
Well  I learned today stopping meds does have it's cost. Cd4 went from 1081 to 797 in one month. Vrl load hasnt come back yet so it looks like I don't get to ride the med free train for very long.  Nothing else to say

What the hell are you complaining about? 797 is a respectable number and isn't a clinically significant drop.
Title: Re: having thoughts of stopping meds
Post by: buginme2 on July 12, 2011, 09:51:09 pm
Even though a 284 drop in cd4's in one month sounds significant, its not.  Cd4's bounce around, they can vary not only month to month but even during the course of a day.  In this type of circumstance it would be better to compare your cd4 percentage from last month to this month.  The percentage should be more consistant reassuring you that this drop is not clinically significant, as Ann said. 

Title: Re: having thoughts of stopping meds
Post by: Joe K on July 12, 2011, 11:32:39 pm
Well  I learned today stopping meds does have it's cost. Cd4 went from 1081 to 797 in one month. Vrl load hasnt come back yet so it looks like I don't get to ride the med free train for very long.  Nothing else to say

Jake, please listen to Ann and remember your anxiety level.  Trends are what matter and yours are doing fine.  Stop looking at each test as a marker of your health and instead look at the trend.  As long as the numbers stay solid, the trend is good and you will be fine.

Speaking of which, have you tried any anti-anxiety medications yet?  Sounds like you could use a little help.
Title: Re: having thoughts of stopping meds
Post by: thunter34 on July 13, 2011, 12:05:44 am
797?  That's hot.

Seriously...you could double mine to get that. 
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on July 13, 2011, 03:27:02 am
797?  That's hot.

Seriously...you could double mine to get that. 

Don't even get me started.  Also why on Earth are you testing your CD4 every month.  I hope this is only because you've recently stopped medication.

Also maybe someone is more familiar with this but I could've sworn there was evidence that stated that your immune system falls rapidly back to pre-med numbers once you go off of them?  Anyway, best of luck to you Jake.
Title: Re: having thoughts of stopping meds
Post by: PozJeepGuy on July 13, 2011, 09:53:08 am
Thank you bug and hellraiser. I just had it in my head that if it drops that in a month it will keep dropping at that rate. I have to say I think I am going to stop posting until I hit aids status or I am hospitalized because it feels like by people responses I'm wasting your time time. It hasn't even been a year and sorry for asking stupid questions. But I also know I'm not the only person that feels this way. I know people here have it worse, longer, and know more than I do but what I'm going threw (no matter how small) feels big too me. Best of luck to all and I wish you nothing but good health. 

Sincerely,
Jake
Title: Re: having thoughts of stopping meds
Post by: newt on July 13, 2011, 09:56:04 am
If your CD4 count is within normal range ie 500-1,600 or so, then any recorded variation is immaterial and shows nothing, there's lots more cells to move around the body, and they do go in and out of peripheral blood like yo-yos.

- matt
Title: Re: having thoughts of stopping meds
Post by: wolfter on July 13, 2011, 10:11:41 am
You're wasting nobody's time and there are no stupid questions!  Accept the positive responses and disregard the irrelevant ones.
Greg
Title: Re: having thoughts of stopping meds
Post by: skeebo1969 on July 13, 2011, 10:32:18 am
I have to say I think I am going to stop posting until I hit aids status or I am hospitalized because it feels like by people responses I'm wasting your time time.

 Jake, it's your life-- you can do what you want.  I highly doubt the above is your goal, but if you keep playing around with this it will be the end result.  Once again, your choice.... we don't have to necessarily agree with it.

 
Title: Re: having thoughts of stopping meds
Post by: Ann on July 13, 2011, 10:59:34 am
I have to say I think I am going to stop posting until I hit aids status or I am hospitalized because it feels like by people responses I'm wasting your time time. It hasn't even been a year and sorry for asking stupid questions.

Jake, you're not wasting anyone's time and you're not asking stupid questions. We just want you to realise that you're ok and please, try to relax a little. You've actually had very many well thought out responses in this thread (hijack aside, which was dealt with).

If I offended you when I said "What the hell are you complaining about", I can only sincerely apologise. I didn't mean it like it would seem you took it - maybe I should have added a smiley as I meant it in a light-hearted way. I wasn't trying to trivialise, I was only trying to show you that the drop wasn't anything to worry about.

Your CD4 numbers are going to bounce around and it's something that you will get used to in time. As someone else mentioned, you should also be looking at your CD4% as this is a more stable number and will shed light on what's actually going on and where your trend is at.
Title: Re: having thoughts of stopping meds
Post by: kenkonken on July 13, 2011, 08:31:23 pm
I want to stop the medication too. i dont know if i should. my cd4 is low, but i am in good health condition, before i took medication, i was still good even low cd4.

really bored with medication:-(((((
Title: Re: having thoughts of stopping meds
Post by: Matty the Damned on July 13, 2011, 08:32:58 pm
I want to stop the medication too. i dont know if i should. my cd4 is low, but i am in good health condition, before i took medication, i was still good even low cd4.

really bored with medication:-(((((

Ken,

1. Welcome to the forums;
2. You should start your own thread about this, rather than post in this one;

MtD
Title: Re: having thoughts of stopping meds
Post by: Miss Philicia on July 13, 2011, 09:06:28 pm
"bored" with medication? That's a new excuse.
Title: Re: having thoughts of stopping meds
Post by: Rev. Moon on July 13, 2011, 09:11:57 pm
"bored" with medication? That's a new excuse.

Maybe he's not on Atripla. It's a party ever night.

My meds sparkle when you take them out of the bottle.  They also pop and crackle in my mouth.  Love 'em.
Title: Re: having thoughts of stopping meds
Post by: kenkonken on July 13, 2011, 11:01:17 pm
the pills not bothered me much actually. but i am not from your country, i said bored because in my country it made me (i think for other HIV carrier too in my area)  feel like i dont want to go to get the medicine. probably you all will not get how the feeling is. >:(
Title: Re: having thoughts of stopping meds
Post by: wolfter on July 13, 2011, 11:06:41 pm
the pills not bothered me much actually. but i am not from your country, i said bored because in my country it made me (i think for other HIV carrier too in my area)  feel like i dont want to go to get the medicine. probably you all will not get how the feeling is. >:(

How about introducing yourself in a new thread and explain what you're trying to convey.  I'm not sure how you feel because I'm not sure what your issues are.
Greg

PS, we're not all from the same country.
Title: Re: having thoughts of stopping meds
Post by: Hellraiser on July 14, 2011, 01:33:04 am
Thank you bug and hellraiser. I just had it in my head that if it drops that in a month it will keep dropping at that rate. I have to say I think I am going to stop posting until I hit aids status or I am hospitalized because it feels like by people responses I'm wasting your time time. It hasn't even been a year and sorry for asking stupid questions. But I also know I'm not the only person that feels this way. I know people here have it worse, longer, and know more than I do but what I'm going threw (no matter how small) feels big too me. Best of luck to all and I wish you nothing but good health. 

Sincerely,
Jake

Not my intention so if you got this from my post all apologies.  I tend to have a brusque tone on the internet anyway, sorry.  Anyway I think what some people were trying to say is the fact that you're at 797 CD4 is a stellar number even if it is a lower number than your previous result.  Next time you test it may go up again you just haven't had enough tests with enough time between them to draw any long term conclusions.  Dude frankly your anxiety level seems a bit high, is everything okay?