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Author Topic: having thoughts of stopping meds  (Read 30312 times)

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Offline newt

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Re: having thoughts of stopping meds
« Reply #100 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
"The object is to be a well patient, not a good patient"

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #101 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. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline SunnyFlorida

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Re: having thoughts of stopping meds
« Reply #102 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%.

Offline Solo_LTSurvivor

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Re: having thoughts of stopping meds
« Reply #103 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.
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline newt

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Re: having thoughts of stopping meds
« Reply #104 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
"The object is to be a well patient, not a good patient"

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #105 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. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline woodshere

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Re: having thoughts of stopping meds
« Reply #106 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.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline SunnyFlorida

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Re: having thoughts of stopping meds
« Reply #107 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!

Offline edfu

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Re: having thoughts of stopping meds
« Reply #108 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.   
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline SunnyFlorida

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Re: having thoughts of stopping meds
« Reply #109 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.

Offline newt

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Re: having thoughts of stopping meds
« Reply #110 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
"The object is to be a well patient, not a good patient"

Offline J.R.E.

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Re: having thoughts of stopping meds
« Reply #111 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
« Last Edit: May 12, 2011, 08:02:32 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #112 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.   
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline edfu

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Re: having thoughts of stopping meds
« Reply #113 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
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline newt

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Re: having thoughts of stopping meds
« Reply #114 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
"The object is to be a well patient, not a good patient"

Offline wolfter

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Re: having thoughts of stopping meds
« Reply #115 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.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #116 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.
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline wolfter

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Re: having thoughts of stopping meds
« Reply #117 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?
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline newt

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Re: having thoughts of stopping meds
« Reply #118 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
"The object is to be a well patient, not a good patient"

Offline Joe K

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Re: having thoughts of stopping meds
« Reply #119 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. 

Offline Lou-ah-vull

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Re: having thoughts of stopping meds
« Reply #120 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
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #121 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. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline denb45

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Re: having thoughts of stopping meds
« Reply #122 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   ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #123 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
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline Jeff G

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Re: having thoughts of stopping meds
« Reply #124 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 .    

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #125 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.
Jacob Perry

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Offline Jeff G

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Re: having thoughts of stopping meds
« Reply #126 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 .   

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #127 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.

Offline buginme2

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Re: having thoughts of stopping meds
« Reply #128 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. 

Offline Hellraiser

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Re: having thoughts of stopping meds
« Reply #129 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?

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #130 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.
« Last Edit: May 25, 2011, 04:01:46 AM by Matt39 »

Offline edfu

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Re: having thoughts of stopping meds
« Reply #131 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? 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #132 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?

Offline mecch

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Re: having thoughts of stopping meds
« Reply #133 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!



« Last Edit: May 25, 2011, 08:02:51 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline newt

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Re: having thoughts of stopping meds
« Reply #134 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
"The object is to be a well patient, not a good patient"

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #135 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.

Offline GSOgymrat

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Re: having thoughts of stopping meds
« Reply #136 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.

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #137 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


Jacob Perry

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Offline Joe K

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Re: having thoughts of stopping meds
« Reply #138 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.

Offline Buckmark

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Re: having thoughts of stopping meds
« Reply #139 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
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
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Offline David Evans

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Re: having thoughts of stopping meds
« Reply #140 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
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Offline gemini20

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Re: having thoughts of stopping meds
« Reply #141 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

Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #142 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. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline wolfter

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Re: having thoughts of stopping meds
« Reply #143 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
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #144 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
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #145 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. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #146 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. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline Hellraiser

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Re: having thoughts of stopping meds
« Reply #147 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.

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #148 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. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline bmancanfly

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Re: having thoughts of stopping meds
« Reply #149 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.



"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

 


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