Doc Encouraging Me To Change Meds...Need Advise

[Gary S]

Hi. I've only posted one or two messages but I religiously read all of your posts and am grateful for all the information and advise shared here. I need some help making a decision and was hoping some members knowledgeable about treatment and side effects (like Ann, newt or many of the of the other treatment savvy folks here) could give me some thoughts.

I'm 55 and I've known I was positive since '88. Lowest T-cells were about 140 a long time ago. I've been on AZT, the dreaded D-drugs (DDI, D4T) and most of the early drugs. I started Kaletra and Truvada in 2005 and at the time it was about my only option and I was glad to have it. I struggled getting to undetectable and this combo finally did it. I've been undetectable since with pretty good T-cells. Right before starting Kaletra and Truvada, I was on a doctor approved/ advised drug holiday because he felt like I was getting "toxic" based on symptoms/ side effects (head aches, eye twitching, nausea. nueropathy etc. etc. etc. )

Last September I left my high stress, long hours, brutal travel job of 21+ years. Just couldn't do it any more. I was exhausted, had daily diarrhea, head aches, increasing nueropathy, nausea, multiple kidney stones etc. etc etc.). While some of the symptoms/ side effects improved slightly by not working, I am by no means feeling great so in June of this year, my doc tried to get me to change meds because he feels like again I may be getting "toxic".

I was reluctant given how long and how many meds it took me to get to undetectable and while I'm not [b]feeling[/b] great, from a "numbers" perspective Kaletra/Truvada have done the job. He told me a lot has changed as far as options since 2005 and was confident I would respond to the new, less-harsh meds now available. Besides, he said, you can always go back.

We left it that we would discuss it again at my next visit in October .Well my appointment is coming up and was hoping to get some advise as to what  I should change to if I do make a change. ( FYI- My bf is on Sustiva and I'm not sure the sleep/ dream side effects would be good for me). Also, have any of you heard of being "toxic" without lab work that indicates that diagnosis?

FYI- I'm also on Serostim, Androgel, Crestor, Allopurinol, Marinol lots of supplements and an occasional lorezepam

Thanks again to all of you for your time and commitment to this Forum. It has helped me a great deal and I am clearly not alone in my feelings.

[aztecan]

Hey Gary,

Good to hear from another LTS.

I fully understand your trepidation about changing meds. I stuck with AZT/Epivir/Crixivan for more than a decade myself. it worked, even if I did have problems like kidney stones, anemia, etc.

I don't know that I have ever had a doctor tell me I was getting "toxic," but I think your doctor may have the right idea about easier combos.

I also hear you about Sustiva. While many take it without problem, I couldn't handle it.

That said, I wouldn't fear trying something new, especially since you seem to have real problems with the regimen you are on.

Perhaps something like Truvada/Isentress, which has shown to have few side effects? That is my regimen and it is very effective and easy to take.

There are other meds out there too, but I have no experience with them.

The only real way to know if you are going to have issues is to try a new regimen and see how you like it.

I hope you find one you like. Let us know how it goes.

HUGS,

Mark

[newt]

Hello

Part of the issue here is managing the other things, the non-HIV stuff along with the consequences of HIV for your body and, especially, the damage from early drugs like d4T.

This said, if it were me I would be saying I've had a good run on Kaletra and perhaps time for something else....

But without a break ideally. For these reasons: if you have had trouble getting your viral load under 50 copies then why take a step back? and recent research shows breaks are bad for your health. However, a short break like a week or two or thereabouts could be a possibility if you/your doc really believes the rest from meds will be beneficial << I do not go with this view except in very serious acute side effect situations

There are a lot of options, starting with the main runners:

1. Prezista is modern PI which can use half the amount of the Norvir booster than Kaletra contains. It is kinder on the gut and better on affecting blood fats.

2. Isentress is an integrase inhibitor and has no metabolic interactions in the cell, does not need Norvir, and therefore attractive in respect of effect on blood fats, glucose etc.

3. Intelence is a non-nuke like Sustiva, the trippy one in Atripla, but considerably less trippy, if at all. This also does not need Norvir.

All these are resistance busters. They can be paired together. This means any 2 of them + 1 nuke can make a low-nuke combination. Or on their own + 2 nukes can make a standard-format combination.

Choice of drugs needs to bear in mind resistance plus heart, liver and kidney health, and your doc will surely test all these before you have a discussion. I would be keen  to be on less Norvir if possible. This is a biggie in terms of lipids/digestion etc.

As an aside, I note Crestor is not the preferred statin for use with Kaletra or any other similar drug (and some other HIV drugs) in the UK because of possible interactions/dosing issues/extra side effects. And many of the things you describe are also side effects of Crestor as well as many of the HIV meds.

Hope this helps

- matt

PS - have checked for interactions with your other medications. The only question mark is over the choice of statin to go with a new HIV drugs combination, and its a ? not an X for Crestor for the 3 main choices I give above (not quite an X anyway).

[Gary S]

Matt/ Mark,
   Thank you for taking the time to give your insight. I feel so much more prepared to ask the right questions when I have the discussion with my Dr.

   I hope you know how helpful your posts are to so many of us that come here for information. Getting advise from people who are also living with HIV is invaluable and I'm so appreciative of the level of detail you provided in your response to me.

Gary

[Tempeboy]

Hey Gary,

If you have kidney problems you might like to steer clear of tenofovir - one of the drugs in Truvada.

All of Matt's suggestions are excellent - as always, you could also consider Nevirapine - one of the Non Nukes which I understand is available in the US and Europe as an extended release formulation - ie one pill.

Nevirapine has a long half life, so is forgiving of late doses - it has the best penetration of the brain and genital tract of all HIV meds (according to the research I have been following it can get most people undetectable with Viral Load tests sensitive at 1 copy/ml of blood and semen.  Nevirapine can also reduce blood fats - at least according to some research.

One great combination for treatment experienced folk is the RED max combo.

  Raltegravir
  Etravirine
  Darunavir

This combination is very effective against the virus, is being used by many treatment experienced folk and has a very favourable side effect profile - ie is very well tolerated.

Let us know how you go!

TB x

[Gary S]

Thanks Tempeboy,
  I'm adding your RED suggestion to my list of topics for the doc.

Gary

[Gary S]

Well we landed on Isentress and Truvada.

 Does anyone know how "forgiving" Isentress is regarding dosing every 12 hours?  I've had no concerns about messing up the 12 hour timing of Kaletra (as long as I got 2 doses in 24 hours) but wanted know if I needed to be more adherent to precisely every 12 hours with Isentress

[aztecan]

Hey Gary,

Isentress is not quite as forgiving as Kaletra when it comes to dosing, but not as unforgiving as unboosted Crixivan was.

I try to take my Isentress 12 hours apart, but sometimes it may be 14 or 15 hours. I try not to do this, but it happens.

I would probalbly try to be a consistent with it as possible, but I wouldn't lose sleep if I were an hour late.

HUGS,

Mark