Drug holiday

[Guest guest]

Hi Dave--

I recently did a treatment interruption/drug study as part of a vaccine study I'm enrolled in. After over 20 yrs on meds, and around 1000 CD4s I was anxious to go off for awhile just to see what it felt like. In the space of a month I went down to 338 CD4s, got a really bad case of the flu, lost weight, and generally felt tired and not myself. Like you, I'm on Viramune and I had to work carefully with my dr to determine how long before stopping my meds I should stop the Viramune so I wouldn't develop resistance. I restarted the same regimen, and after 2 mos my CD4s are back up to 860 something, I've regained my weight, and feel normal again. Jules is quite right about all the risks--not just of resistance but greater rates of things like heart disease, etc. If I weren't doing it to advance vaccine research I wouldn't have done it, and would be reluctant to do it again.

What rationale does your doc give for wanting you to do a drug holiday. Truvada/Isentress is a very well tolerated regimen, so it's not likely for side effects. If you are having problems with your regimen, fix the the regimen, and don't mess with success. My two cents, as a reformed drug holidayer...

Jeff in Palm Springs

From: "Dave Marquette" <djrunnergo@...>

Subject: Drug Holiday for 1 year or more

Date: January 21, 2010 2:12:57 AM EST

Hi all, my CD4's are very high now and my Dr. is stating I could do a Drug

Holiday.

I'm wondering if anyone has done one for a year or more and my question is

can you go back to the same combo you were on before the drug holiday or

does your body automatically become immune to it if you stop and you'll have

to go on a different combo?

I'm on the Truvada/Viramune.

Thanks all.

D.J.

[Guest guest]

I am so sorry that you have been going through all that hell.

Have you seen a good neurologist that knows about HIV related neurological

issues?

Have you had a CT scan of your head?

You were on a pretty problematic HIV regimen that we no longer use because of

side effects (boosted Crixivan). I have not seen any neurological related

complication data on this combo since we abandoned it 10 years ago due to

lipodystrophy, high lipids, diabetes, ingrown toe nails, hair loss, and other

issues.

I am glad you are switching. I hope symptoms improve.

Are you on any migraine drugs or drugs like aricept?

Drug Holiday

I am writing seeking input. If I have missed something in a prior post that I

should have seen, please accept my apologies in advance.

The first cocktail I was put on was Combivir and HIVID. This was in 2002. I

was only instructed to take two HIVID pills per day rather than the three that

probably should have been taken. That created resistance for me. Since then I

have had endless problems with finding a cocktail that actually gets my viral

load to undetectable and that I can tolerate.

We did do a drug holiday from about 2004 to 2006. At the low point my CD4

counts were in the mid 200's. I have never had an opportunistic infection. My

highest CD4 count was in the high 400's, and that was relatively recently on a

cocktail of Crixivan, Norvir, Epzicom, Viread, and Isentress. I was placed on

this cocktail because of neurological problems. This is supposed to have

optimal blood brain barrier penetration.

My HIV doctor wants me to switch to Selzentry, Epzicom, and Isentress.

Mid year, last year I was diagnosed with Parkinsons. I have been experiencing

cognitive problems since 2005 and part of the Parkinsons diagnosis was dementia.

I'm not a doctor, but my suspicion is that what I am dealing with is Lewy Body

Dementia. It fluctuates, and those dealing with it have difficulty with

executive function, which I do. there are several other markers that I won't go

into.

I have been having nasty chronic headaches for several years. They are not

migraines. They are probably Parkinson's Nuchal headaches. Lately they have

been worse. My neurologist suggested the possibility of taking a drug holiday.

When I did this before, it took more than a month before I felt like the side

effects of the HIV meds were out of my system. About a year ago in frustration

I stopped taking my meds for about two weeks and during that time the headaches

did increase substantially.

I do have Parkinson's tremor, gait problems, swallowing difficulties, etc. I

think what I am dealing with is probably Lewy Body Dementia, but I don't know

how that relates to the headaches.

The headaches are the problem. I need these constant headaches to subside. The

rationale for the drug holiday is that all the meds show headaches as a side

effect. I don't think the headaches are a side effect I think they are a

primary part of my condition.

What do others think of the suggestion to do a drug holiday?

Do others have experience with chronic headaches, HIV and any other of the

illnesses of aging?

Thank you in advance for any help that can be offered.

Neurodefect

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