To those who have stopped HAART

[dad1216]

A little over a month ago, I went to my local mental health clinic as I had made the decision to stop taking all my meds.  I needed to understand if I was making a rational and informed decision.   Needless to say I have gone through intense therapy over the last month.  Working with the therapist and the shrink I find that my reasoning was indeed rational and informed.  I have agreed with the shrink to contact an ASO provider and to see if they can provide help.  I know that I fall in the very small percentage of people who have decided to make this decision.

Since dissecting some of my issues with them and the help of their meds I still own my decision and understand the consequences.

I know that it is the goal to change my mind and to get back on the meds.  Maybe as the reasons are eliminated it will open my thinking.

I am to have an intake the first of October with an ASO. 

To the few of you that also have made this choice I have a couple questions.

Should I really see an ASO with the decision not to take meds?  I don’t want to take anything away from someone who decides to take meds and can use a service that I may get. Do any of you use one?

Have you found an ID doctor that supports your decision one that will allow you to make your treatment decisions?  My current ID will not hear of it.

Do you just not use HAART but just treat OI’s? 

Do you often challenge your decision? 

Do you find support with this choice? 

As you can tell I still have that 1% of thinking that I have made the wrong choice.  Or, maybe I am still keeping an open ear.

[gemini20]

Hi,

I stopped HAART in October 2005 when my cd4 count got up to 474 (33%) and v/l was undetectable. I did not see any reason to seek the services of an ASO - I was very clear about my decision and my reasons behind it. I certainly have not found myself challenging my choice in the last 12 months, maybe because I have remained well and healthy in spite of falling cd4 and rising viral load.

I am lucky in that i have had the same HIV doctor for 15 years and he fully understands where I am coming from and supports my treatment decisions. I am sure that he would prefer me to be on treatment but is certainly not pushing me to change my mind.

My cd4 count is just above 200 and it is likely that if it falls below 200 I might consider PCP prophylaxsis but no guarantee.

As for support for my choice - most friends understand where i am coming from and support me; occasionally I come acorss other positive people who don't understand why I would choose not to be on treatment. Ultimately I know that I go to bed each night happy in the knowledge that I am in control of my own destiny.

Best wishes,

Emma

[dad1216]

Ultimately I know that I go to bed each night happy in the knowledge that I am in control of my own destiny.

Thank you Emma   

[GSOgymrat]

Why do you want to stop HAART?

[ARMANDO]

I too at one point was so fat up with taking meds that i one day decided to stop my meds.I was off for about one year and it was great,i lost weight,felt better than ever.then one day i came down with BELLS PALSEY(I DO HAVE A HISTORY OF SHINGLES).THATS THE PROBLEM WITH GETTING AFF MEDS,YOU 'RE IMMUNITY IS SO LOW THAT YOU CONTRACT ANY AND EVER DISEASE THERE IS

[dad1216]

Why do you want to stop HAART?

Because….
My body can’t handle the side effects anymore.  I was a prisoner to the bathroom, to lying in bed for days, hiding in my house not wanting to see anyone, just wanting to die.
I couldn't eat, couldn’t sleep, and couldn’t even get my brain to work.  The list of side effects that come with the meds really hit me hard.  They drain me of everything.  I was tired of living in severe depression.

I have been on many regimens over the years and either became resistant to them or the side effects made me change.  My body just can’t handle them. Look at my numbers and that is with many years of meds

I want to be in control of my life.  Even if quality outweighs quantity. 

When I made this choice, I just didn’t jump into it.  I understand and own what the consequences are.  I sought out mental health help, and poured my heart out to the therapist and the shrink as to all the issues with wanting to stop.  In my case I am making an educated, informed, and rational decision. 

I need some part my life back for as short as it may be.

[HammyJ]

I have just recently restarted my meds after being a year off of HAART.....I enjoyed my time not taking the meds(I esp. didn't miss the gas and the weird dreams) and my counts and viral load held pretty well for about 8months....and then my counts began to head south with a corresponding rise in viral load.....after a three month delay(remember, this is Canada) I was placed on a new regime, which is far better and better tolerated than the last one....It is once a day, and aside from a few stomache aches, nausea, and a little bit of jaundice(I'm on reyataz, amongst others) which all seem to be settling down, I seem to be adjusting quite well....my energy is up, and the folliculitis and aching lymph nodes that seemed to be increasing the last few months I was off meds is settling too....
If your Dr. indicates that your numbers won't crash by going off the meds, I would encourage you to take a drug holiday.....I have been poz for sixteen years, and have taken meds for about 14 years of them.......so I thought I was entitled to a little break.....
I would caution you about getting advice from your Dr. in going off your meds....you don't want to do it in such a fashion that may cause resistance to certain classes of meds to develop, and may limit your treatment options if and when you decide to go back on HAART.
With a little break, you might give your body a little time to recover from the toxic effects of the meds, and you might find that you are better able to tolerate their side effects if and when you decide to go back on medication. As well,( though in Canada we lag behind the States in approving HIV medications.)....in a years time there may be many more meds that may be available to you, with hopefully far fewer side effects.....
Its a big decision, and not one that should be entered into lightly.....but I am sure you will make the right one for yourself......

Stay well,
HammyJ

[Arkan]

may I suggest alternative therapies to HAART?

I've heard so much about the side effects and I have some friends that are so miserable taking the meds that I am scared to start the HAART therapy. Fortunately I found people interested in giving a try to a fully science based therapy that does not include medication, but food supplements and a better quality of life. It makes sense to me and seems that I have good results so far. May be some of you guys are familiar with this. If not, take a look at grouppekurosawa dot com. The most amazing part is that they are not sponsored by pharmaceuticals.

best to all!!

Gus

[miro]

Hi,
I have a question. I decided to stop HAART. Is it possible to come back to the same meds after break?

[sharkdiver]

may I suggest alternative therapies to HAART?

I've heard so much about the side effects and I have some friends that are so miserable taking the meds that I am scared to start the HAART therapy. Fortunately I found people interested in giving a try to a fully science based therapy that does not include medication, but food supplements and a better quality of life. It makes sense to me and seems that I have good results so far. May be some of you guys are familiar with this. If not, take a look at grouppekurosawa dot com. The most amazing part is that they are not sponsored by pharmaceuticals.

best to all!!

Gus

This sounds dangerous

[Miss Philicia]

This sounds dangerous

Indeed.  So dangerous that Arkan hasn't posted now for the past year and a half.

[sharkdiver]

argh  I fell for the resurrection of an old thread
drat

[Graywolf]

I was started in AZY in 1992 and after 6 months had to be taken off it, went into a Chinese herbal study at my slinic until 1998 when i began HAART, Apivir, Zerit ane Crixivan. The Zerit caused such severe neuropthy that I had to stop HAART adn restarted 3 months later with fewer side effects. I remained on this regimen until December 2004 T4's consistant 900-1100 and v/l < 75. In December 04 my doctor switched to Viread and within weeks i was peeing blood and BP was running 18-200/95-120.
I was in and out of ER 7 times in 4 months, he switched me to Avacavir where I had the hypersensitivity reaction on the hospital 3 more times in 2 months.

In June of 05 he and I had a long serious talk about stopping HAART. Two months later I was rushed to the ER with temp of 105, plus a slsw of other strange symptoms, my T's dropped to 300 and v/. went ot 35,000. After 8 days in hospital the decision was made amoing doctors that I might be experiencing immune resonstituion and was watached very closely for hte fist 6-9 months, monthly  labs. My T4's have been running 420-590 with consistant undetectable viral load. According to my doctor ratios are also holding stready in normal range. He told me only a small handful of his paitents have been able to go off and stay off HAART for much beyond a couple of months without a sharp rise in V/l and drop in T's

I know the day will come when I will have to began taking HAART again and my doctor said we'll have to be creative since it seems the nukes (AZT, DT4, Viread, Abacaviir) cause me the most trouble.

The only meds I'm on are bactrim (for chonric urinary problems that I had even while on HAART) and 800MG of Acycolvit 2x day, plus androgel for low testosterone and been taking K-Pax and glutamine for 3 years. My doctor consulted with the staff nutritionist on the K-pax and Glutamine and he supports it.

I envy those who have been on HAART for 8-10 years and havew had narely a belch for side effects. My decision with my doctor to stop was a hard one hat we discussed for months before I stopped