Treatment Interruption....

[Blixer]

I know there was a lot of publicity about the SMART study when it was discontinued, but I ran across this rather interesting piece on the Washington University Clinical Trials site talking about a single treatment interruption.  The title of the study was:  ACTG 5170, “Predictors of HIV Disease Progression in Patients Who Stop Antiretroviral Therapy with CD4 Cell Counts >350 cells/mm3.”

http://actu.im.wustl.edu/respat/Participant_Communications/a5170_results_v2lpt-021406.htm

[aztecan]

Interesting study, The difference seems to be a single interruption rather than repeated ones, as was done with the SMART study.

I suppose it could be a useful bit of knowledge for someone who wanted to take a break when stopping one regimen and beginning another.

But, from what I could tell, its a one-shot deal, not something to be repeated regularly.

It was interesting though.

HUGS,

Mark

[Blixer]

Mark,

My reading of the study was that for a certain class of individuals, maybe a very limited class, there was the possibility of a rather long term interruption in meds.  But the critical thing I saw was that they started meds fairly early and with a CD4 count that was never under 400.   There is a lot more research to be done in the area, but if the findings in this study hold true, it might give justification to much earlier intervention initially.  As with lots of studies in this arena, it could turn out to hold nothing much of great promise, but I did find it very interesting.

I still find a very widely held view that one should always hold off on meds until your CD4 is in the 200 range even in the midst of a building body of research that indicates earlier treatment seems to have much better long term outcomes.  I'm wondering if that view isn't left over from the days when the toxicity of the meds was much worse than it is today.  I realize that the decision as to when to start meds is a very personal one.

[aztecan]

Yes, I noticed the information regarding the CD4 nadir too. I guess I would qualify, since mine have never been below 400. 

I can't believe some in health care still push the old 200 or below before starting meds thing. I think its ludicrous. Even with the old meds we started at 500 or below.

I still firmly believe it is far easier to save what immune system you have rather than trying to rebuild it after it has crashed and burned. While I understand the medicaiton toxicity issue, the bottom line is prolonging a good quality of life, not trying to resurrect someone.

I look at it this way. I have had 22 pretty easy years, compared with others. If the meds now cause me problems, I can accept that. What I have trouble understanding is waiting until things are pretty grim and then trying to make a comeback if you have the chance to do otherwise.

OK, enough of my rant.

HUGS,

Mark

[Blixer]

Mark,

Obviously you have done quite nicely.  I hope I can say the same thing after 22 years of being on meds. 

I think one of the most important decisions a person can make is in the selection of their HIV doctor.  I think that makes a world of difference.  I was lucky that I figured that out early on. 

I totally agree with you about waiting till things are pretty grim.  As soon as I got over the shock of my diagnosis last year I started reading and asking what I needed to do to make sure I kept as much of my immune system as possible. I  didn't want it to get severely damaged.  It just makes sense that the stronger you are when you start the better chances for keeping things strong.

And some rants are worth ranting more than once...   

David

[blondbeauty]

I agree with both of you. Why wait to avoid toxic effects of meds in the future. I want to be healthy today so I choose to preserve my immune system today. The present is the only thing we have as human beings. Nobody knows what the future holds for us: Iran´s nuclear weapons, aircraft accident, or even a cure...

[jack]

my ts have never been over 400. I went a drug holiday for three years. It was great and I would love to do it again but dont think I can.

[aztecan]

Thanks David. I know I can get on a soapbox sometimes, but I really do believe it is better to preserve rather than wait. Oh, by the way, I've been positive for at least 22 years, but only on meds for 11 years and a couple of months.

Juan, I think you hit the nail on the head regarding worrying about tomorrow when the only certainty we have is today. I remember Tim (Moffie) telling people on the old forums they should live each day to its fullest because today is the only guarantee we have. I think he was right then and you are right now.

Jack, I know a little of your history, thanks to your sharing it with us here. You have been through the ringer as far as the meds go and I know it has been very hard for you. I remember you saying how much better your quality of life was once you dropped the meds. I also remember you recently saying you now have a regimen that allows you a better quality of life rather than just facing day after day of med horrors.

I too sometimes think about med holidays. This has been especially true in recent months. But, I just don't trust the virus. My luck I would lose the health I have. But I do understand your sentiments.

HUGS,

Mark

[pozattitude]

I took a "break" for 1 year and decided to go back on meds.
My CD4 count was over 1000 and undetectable VL before the break and last year my CD4 was in the 400 and viral load in the 100's of 1000's.
I totally understand the fear of the toxicity from the meds, but like Mark I believe I rather keep my immune system healthy as long as possible rather than try to fix it after it gets trashed by HIV.
The main thing hear has to do with individuals response to the virus. Although all of us share some of the same experiences, HIV works differently in everyone.
Some people can stay a long time of meds without jeopardizing their immune systems while others need the meds the sooner the better.

Rich
(who feels like throwing away his pills at least once a week)

[apple]

I will never interrupt treatment again. It is true that we respond to interruptions differently. My CD4 was in the 800s when I decided to stop. Three months later it was 400, three months later 310. i restarted but after 2 years, its at 240 and my doctor is thinking of changing the meds as I have developed resistance. So true, it all depends........but given a choice...........i will never never do it again!

[Razorbill]

I had it all - 26%, 526 tcells, zero vl - and I was so cocky, I stopped meds for 3 months in 2005 and lost it all. Rocketed to 365k, dropped to low tcells.  I went back on and my tcells rebounded some and the VL went away - yet since I'm in a slow slide back down and I've never really picked up where I was.  I feel as if I committed slow suicide.  It was possibly the biggest mistake I've made in memory.  I really fucked up.  Treatment interruptions are BS as far as I'm concerned - just a roulette game you may win and crow about, or just as easily lose and rue over.  I can't tell you the sense of loss and embarassed foolishness the decision has left me with.  Sorry if this seems like a hijack.   

[Blixer]

Not a hijack at all Razorbill.  We have a lot of practical experience on these boards and several of you have shared that personal experience here.  The study I pointed out was a very specific type of situation, but I thought the concept was interesting.  I wasn't suggesting that anyone (including myself) consider a treatment interruption.  Hearing some of the real life examples and a note of caution is very much in order.

[oaklandparkmark]

Took an 18 month break after a nasty bout with reyataz/norvir/videx/epivir regimin. T cells dropped to 100/vl to 500000. Doctor says I may not be able to come back but I had a year and a half without my neuropathy getting worse; virtually no diarrhea; no dizziness; no kidney stones; little to no tinnitus. It may have been a mistake to take a treatment interruption on my part. The doctor let me pick my new regimin since her last two regimins were hell. Currently on viramune/ziagen/emtriva and feel like shit 10 days and counting.Lower back aching,sneezing all day; itching; fatigue. Hooray for pills. At least I can walk across the room without holding on to the wall and I'm not soiling myself, which is how I felt on the last group. Just a rant guys...sorry. Hate this, hate Social Security, hate DCF and hate my county's health department. Only reason I haven't chucked all the new stuff in the trash is my partner got me a new kitten; not the wisest idea but she makes me smile