Update: I left my meds.

[LatinAlexander]

Hi all:

An small update on me. Since friday, I stopped my meds... I have to say it, It feels SOOOOOOOOOOOOOOOOO goooooooooooood. I mean, not feeling drunken, being able to drive late at night, go out.. Feels amazing!!!!!!!

On the arms and legs pain? Well, it hasn't gone. It's there.. I wonder when is it going to leave me alone? But anyway, not taking meds feels cool. For some reason, it feels like (And here comes the denialist) not having HIV. I know I have it, but that is it. I work, and I did something I did not do since I was diagnosed: Got myself some whisky, and yes, I smoked (tobacco) at the same time...  Even a few guys have turned to look at me on the street (which has two effects 1- Reminds me I am sexy  2- reminds me that they are sexy, BUT that I have hiv)

Now, here comes the bad part... I am thinking on avoiding meds for as long as I can. It is just that I am sooo scared of the freaking side effects... Of having to take those pills, without not knowing what is going to happen to me .... I know I am being a whimp, but that is how I feel.

In a lonely night

Alex

[Robert]

Alex.

Our friend Cliff stopped 2 years ago this past Christmas.  He's like you.  He had only been on them for about 1 year and I guess he didn't like what they were doing to him and decided he had had enough.  His numbers aren't all that great and he wasn't feeling so hot a couple of months ago.  But he's feeling better now and is trying to go 3  years without meds.  So you see, you're not the only one and while we might not think it's the best thing to do, well, we still care about you.

I'm glad you're feling sexy.  That very important.

robert

[J.R.E.]

Does your doctor know you stopped the meds. Was it under his supervision?


Ray

[Rainbow1]

I also have been thinking about stopping my meds. I just got my labs yesterday and i really thought my #'s would be better than they are. when i started meds my CD4 was 250 and my VL was only 450. my second labs were CD4 of 232 and VL <50 but here i am today and my CD4 is 208 and VL<50 . I am tierd of feeling sick to my stomach, not sleeping well and not it even seams like i may have another STD although i have not been diagnosed with any other STD. I havent had any kind of sex with anyone for over a year and I really am concidering stopping my meds and trying an all natural way. I  am not trying to highjack this thread i just wanted you to know i am considering stopping my meds and trying something eles. I know how you feel.

[RapidRod]

Then Rainbow, just be prepaired to live with OIs.

[blondbeauty]

I know I will never stop them. I feel great taking them and even if I wasn´t I would be too coward to stop them.

[Rainbow1]

Then Rainbow, just be prepaired to live with OIs.

Well i have never had any OI's and being on meds for HIV and not having anykind of sex why does it seam now i have an OI . If the meds are supposed to work.  I was just trying to explain To Alex that i understand how he feels

[aztecan]

Alex, if you decide to stop meds, I will support you, just as I do Cliff. It doesn't mean I condone that decision, but you are a big boy and can make your own choices.

Rainbow, Rod was just pointing out the inevitable without meds. Since you have an undetectable viral load, it appears your meds are working just as they are supposed to. The fact your CD4s are just above 200 has nothing to do with the meds, but with your immune system.

There is no natural way to fight HIV, despite what the nutcases in Iran say. If there were, millions of people would be clamoring for it, especially those in developing countries where treatments are not avaiable.

Sorry for the soapbox, its just that right now, I am watching someone who will most likely die soon who made the same choices you two are talking about. Taint nothing I can do about it, just watch and wait.

HUGS,

Mark

[RapidRod]

At this point your CD4 is keeping you from getting them. You stop your meds and you drop down to 200 and below then you are at risk. Not having sex has nothing to do with contracting an OI.

[Life]

Alex, I am just concerned that your doctor knows your decision and will monitor your health.   I wish you had better options on meds in your country that are more tollerable for you.   This change makes no difference in our relationship,  we care a great deal for you.   

Love,

[Ihavehope]

We are not here to judge anyone who decides to stop meds but if you post a thread where you claim to stop them and are not specific about your reasons and if it is under supervision then be prepared to be bombarded by negative replies.  I truly hope it is under the supervision of your doctor, if so I wish you well. I can understand if you have been on meds for numerous years or are suffering severely from the side effects to make such a decision. Good luck.

[David_CA]

I had an OI (PCP) with a CD4 of 284 and a relatively decent percentage.  I never want to get that low again, considering how I felt when I had PCP.  I still don't feel as good as I did before I got sick; I still get winded a bit whereas I never did prior.  From what I've read, sometimes the damage is permanent. 

I'm wondering about folks stopping meds.  If there are resistance issues and nothing left to take, and the side effects are really bad, then I can begin to understand.  I really have a hard time understanding when it's somebody who's not been on meds for a long time.  I know a lot of people take the 'old' drugs and have bad side effects.  There are often alternatives (newer drugs with other side effects).

Like Blondbeauty, I feel great taking meds, and I too would be scared to stop.  I learned my lesson from having PCP; I never want to go there again.  Of course, this is a personal decision; lots of folks smoke, and we all know what that does to a body.  I quit smoking 'cause I knew I'd not forgive myself if, one day, I was sick as hell from doing something so avoidable.  I kind of feel like that about HIV drugs (serious side effects and resistance to all current meds excepted).  Good luck, and take care.

David

[allanq]

Alex,
The medical information in the signature of your post indicates that Sustiva and Combivir were doing a great job of suppressing the virus.

Did you and/or your doctor consider the possibility of changing your regimen, rather than just stopping the drugs? The AZT you were on was likely the cause of your myalgia. Perhaps a change from Combivir to Truvada or Epzicom would work for you.

Over the course of the last 18 years, I've been through almost all the HIV drugs that have ever been invented. If you're having problems with a drug regimen, you should at least try a different one before giving up on all drugs.

I don't understand why so many people seem to be more afraid of HIV drugs than they are of getting sick.

Allan

[Christine]

Hi Alex,
I know you have been having horrible pains. And your decision to stop meds is up to you. It is your choice. My personal selfishness is to have my Aidsmeds family healthy and around as long as possible.

My thoughts on stopping meds, is that you, along with Rainbow, or anyone who stops meds, have to completely understand what the future could hold. And you have to accept those consequences. If you are comfortable with that choice then I support you.

If you are living in denial, and think that OI's won't happen to you, and your life will continue on without any possbile consequences, then I won't support you. I won't support someone living in denial.

I will support someone who understand the consequences of their choices, accepts the consequences of those actions, and is making a choice which they feel is best for them.

I hope that all made sense, and is not sounding judgemental. Because I don't mean it to be.

I have debated for the past year stopping meds. The hiv meds have not been good to me. Yes, they have extended my life, but my quality of life this past year has greatly suffered. Personally, I am not ready to accept the consequences of stopping my meds. I have discussed this with my husband, therapist and the doctor.

It is not a choice I take lightly, and I pray that you and Rainbow will not take the choice lightly either.

And Rainbow, have you talked to your doctor about your side effects including sexual issues? There might be something going on other than hiv effecting your libido.

Christine

[redhotmuslbear]

If you're having problems with a drug regimen, you should at least try a different one before giving up on all drugs.
I don't understand why so many people seem to be more afraid of HIV drugs than they are of getting sick.

I agree with the first part of what Allan has to say here.  Particularly for newbies to meds who do not appear to have acquired any drug-resistant bugs, insist that your doctor prescribe a regimen with minimal side effects and a dosing routine you can handle.  For instance. Viramune+Truvada mirrors a Sustiva+Combivir regimen without the aletered mental state and potential nerve complications.  Side effects are a major contributor to poor adherence to meds, and your doctor should want to make certain that you have every incentive possible to take your meds every day as prescribed, instead of fear their consequences.

As for fearing meds versus getting sick, those of us who are more experienced in the meds game need to accept our role in the situation.  Several times I've joked with HIV+ friends my age or younger that we sound like our parents and grandparents when we get together, comparing our ailments, our pills and their ills.  I know I've been guilty of going on about spontaneous body hair loss on Crixivan or intolerable sh*ts on Viracept, but I need to accept my complicity in those situations, taking meds without fully understanding their probable consequences and arguing for something less problematic.... but then it's a Catch-22:  how would I have known about the problems if someone hadn't discussed them?  In the end, I guess, the sharing of the down sides needs to be in a balanced manner to expose the benefits and the risks, so someone else can take a reasoned look without being driven to fear.

David

[allopathicholistic]

Alex: We know you've been seeing different specialists and I can only imagine the stress that would add to you being poz and being on on meds for only a few months. Please sweetcakes, I implore you to listen to the veterans of this site. Share with us what your HIV doctor told you. We really need for you to check in with us

There is no natural way to fight HIV, despite what the nutcases in Iran say. If there were, millions of people would be clamoring for it, especially those in developing countries where treatments are not avaiable.

Sorry for the soapbox, its just that right now, I am watching someone who will most likely die soon who made the same choices you two are talking about. Taint nothing I can do about it, just watch and wait.

Rainbow: Your meds are working meaning the job of meds is to suppress viral replication and your VL is under 50 copies. Please read the quote above. Please don't be a "nature head" I was that for years till I ended up with 42 T cells. How about staying on meds *and* doing natural stuff too? As in, both?

[poet]

Dating back before meds. except AZT, I have always sat back and allowed anyone who had thought through what he or she was doing to do whatever it was, whether a new therapy (try the remove your blood, heat it up to kill hiv and then return it   or stopping meds.  BUT, and this deserves caps, 'you' really need to think through starting meds. including how 'you' will maintain adherence before 'you' start them.  'You' don't want to end up with resistance, because the virus, introduced to meds., has the time without them to figure out a way around them.  The side effects have often been bad.  I wish everyone a combination which has only side effects which he or she can, somehow, deal with.  Best, Win

[J.R.E.]

Hello Again Alex,

The reason I had asked you earlier, about whether you had stopped your treatment, under the supervision of a doctor, is because of the following. Please read it carefully. You can read further at the link I provided

"Drug Resistance When Stopping Treatment
People sometimes stop treatment -- because of toxicity, because another health problem requires a treatment interruption, because they've been responding well and decide to discontinue therapy for a while, or because they're just plain tired of taking medication. If you stop treatment for any reason, work closely with your healthcare provider. Careful planning is important.

Depending on your regimen, if you stop all of your antiretrovirals at once, your virus could develop resistance to one or more of the drugs you were taking. This is most likely to happen if one of your drugs has a long half-life, meaning that drug levels stay high in your body for a long time after you take a dose.

For example, it can take up to three weeks for Sustiva (efavirenz) to be eliminated from your body after you stop taking it. If you stop Sustiva at the same time as you stop taking other antiretrovirals with shorter half-lives, it's like being on Sustiva by itself for a while. This gives a survival advantage to any virus in your body with the mutation that makes it resistant to Sustiva. During that short time after stopping your drugs, much of your HIV could become completely resistant to Sustiva and become resistant to Viramune and Rescriptor, too.

http://www.thebody.com/tpan/septoct_05/drug_resistance.html




Take care of yourself-------Ray

[dtwpuck]

 I am thinking on avoiding meds for as long as I can. It is just that I am sooo scared of the freaking side effects...

Alex... I am not going to minimize the side effects.  They are awful.
However, I can guarantee to you that AIDS is much more unpleasant.

I believe that you have the right to manage your own health.  I can support that 100%.  But, to me, it just doesn't sound like you are making this decision with a full acceptance of the consequences.   Good luck, and I sincerely hope that your decision turns out to prove my reservations to be completely unfounded. 

[jordan]

My doctor said that once I started HAART I was on it for the rest of my life and that even missing one day would allow the virus to adapt (i.e., it would be harder to fight).

Can I stop my meds?  my one-year anniversary on HAART (currently I'm on Atripla) is February 25, 2007 (in just a few days)?

[Blixer]

Alex,

I don't want to belabor the issue of stopping meds.  I just want to tell you that I had myalgia issues when I started.  I only made it 17 days on the first meds and the myalgia was so bad that I was in constant pain.  I told those closest to me (who knew my situation) that if I had to live like this, then it wasn't worth it.  My doctor stopped the meds for 25 days.  It did take almost 2 months for the myalgia to go away.  I started back on meds after 25 days with the med suspected of being the culpret dropped from my regimine and replaced with another one.  I'll admit, I was scared.  The first day after starting, I thought the bad pain was returning.  My doctor just said, "if the pain gets too bad, stop the meds and we will let everything clear from your system and start over."  That statement was a liberating statement for me.  My doctor put the decision in my hands and I decided to just take it one day at a time.  And you know what, after a week I could tell for sure that things were now getting better.  I'm 2 weeks away from my one year anniversary of starting meds.  The myalgia is gone.  I'm back to working two jobs.  And for the most part I feel better than I have in a long time.  And mentally, I know this virus that has taken up residence in my body is getting the hell kicked out of it.

So after all of that, my point is simply not to give up.  It is your choice about staying off of meds or going back on something different.  But, just because you started with a bad (and rare) experience doesn't mean that you will always have bad experiences.  My second time around has been smooth sailing.

Best of luck and heres to your good health.

[whizzer]

The side effects can be unpleasant.  I suffer from them too.  It would be nice not to have to take meds, but they are the only thing keeping my viremia under control.

However unpleasant the side effects are, however, they are infinitely more pleasant than drowning in lung fluids caused by millions of Pneumocystis carinii fungi, or being covered in KS lesions, blinded by cytomegolovirus, or any of the other horrible, horrible ways one can die - slowly -  from OIs.

Perhaps a medication change is a more reasonable approach, rather than a total abandonment of HAART.  You have (or had) a viral load less than 50 and a nice CD4 rebound.  Why throw that away? 

It is your body, do with it as you choose.  Just be sure you are ready to accept the consequences of the choice you make. 

[blondbeauty]

If you get an OI during your stay in Madrid I won´t visit you at the hospital. You will have the "cheerful" company of other people in the same room not letting you sleep and sharing the same bathroom. How nice! Yes...taht is how public hospitals work...and private ones do not treat HIV or HIV related illneses.

[LatinAlexander]

Hello everybody!:

I did not stop my meds just because I wanted to... I was very happy with my current combo (Combivir+Efavirenz). Very confy shall I say, very convenient.

However, a very strong myalgia began on my legs and arms. I got tried many pain relievers (including a derivate from opium) which did not work at all. I visited many different doctors and a got lot of different lab tests (some very uncomfortable). However, none of them revealed a clue on what was going on. So, my ID, my Neurologist , My nurse and I took the decission to stop AZT. So, yes my doctor is aware of the decission. We are going to be replacing my AZT with something else (ddi or Abacabir), however, the more convenient meds (like Epzicom, Truvada or Atripla), are not available in my country, because Gilead Sciences doesn't care.

So the process has 2 phases: Getting rid of AZT, , and begin with the new combo. But I couldn't stop all my combo at the same time, because of the long time of Sustiva. So I had to stop Sustiva first, and one week later, Combivir. Now, we gotta wait for the pain to dissapear (which hasn't happened yet), and then being again.

Now, I know the consequences. Very clearly. I mean, I cannot hide from my reality, I never had: I have a disease that has no cure. Period. The only thing that keeps me from dying in an horrible way (KS, PCP, or any other thing) , are the meds. But this side effect  was a pain (literally).

I wanna thank you all for your concerns. For your strong, direct, real words. You have been with me in this journey, and God knows that you are the strength that in some very dark days, help me keep going.

I know i have to go back  on meds. I simply know it, the other choice is imply to terrifying. But this little piece of freedom feels so good.

It is a temptation. Not going on meds. Having the (fake) hope of not needing meds for some time... Just for some time. You know I had to go right away from diagnosis to meds, and I ... Well whatever.

Alex

[whizzer]

Well Hell Alex,

Why didn't you say all that to BEGIN with?

[mjmel]

Occasionally, when I read what people suffer through to stay compliant with their assigned drugs, I realize that my own side effects are easy to deal with, in comparison. I am humbled. Good riddance to that AZT. Meanest of them all, I think. Good luck and best wishes in your future, Alex.

[allopathicholistic]

It is just that I am sooo scared of the freaking side effects... Of having to take those pills, without not knowing what is going to happen to me .... I know I am being a whimp, but that is how I feel.

In a lonely night

Alex

Alex, loathing side effects is normal: None of us want them.

Yes, a little freedom from side effects is sweet. Have fun. be sensible with whiskey and tobacco baby.

You've got a good healthcare team and you've got us  "Solidier on, solider"

Edited to add: Remember, no one knows exactly what's gonna happen in the future. Let's do the best we can for ourselves, based on the HIV knowledge of today

[tigger2376]

I wish you well and symptom free soon. Hate to sound preachy but please monitor things with your medical and support team and take care of yourself. I had a bitch starting meds but would be too scared to stop frankly! Have a drink for me..and enjoy!

[blondbeauty]

When you come to Madrid try to bring meds for 3 months. You will need that time to get your first appointment, diagnosis confirmation and first labs results to continue treatment here.

[redhotmuslbear]

My doctor said that once I started HAART I was on it for the rest of my life and that even missing one day would allow the virus to adapt (i.e., it would be harder to fight).  Can I stop my meds?  my one-year anniversary on HAART (currently I'm on Atripla) is February 25, 2007 (in just a few days)?

Jordan,

You can always stop your meds anytime: it's just a question of the consequences and your willingness to deal with them.  The fact is, the thousands of virii in your body, even at undetectable levels is always making sloppy copies, and in time some of those copies are likely to have mutations that let them slip past at least one of your drugs.  Depending on what your pre-meds numbers were and what your numbers are now, stopping meds might give you some psychological relief and let your system detox while you research options and help your doctor select another, less troublesome combination.

If going off meds is a serious consideration, you might want to take a look at clinical trials open in your area that would require your going off meds for some period.  That way your experience can add to the body of research on HIV and have another clinician, in addition to your current doctor, involved in your care.  Hit http://www.clinicaltrials.gov and search on HIV and your state name.

Best,
David