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Author Topic: A suggested change in medication  (Read 2972 times)

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Offline MarkB

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A suggested change in medication
« on: June 03, 2011, 06:48:21 PM »
Further to my recent thread on the Mental Health forum:

I had a long day today going to the clinic in London. I saw a new doctor (actually, it seems like I see a new one virtually every time!): and a very nice lady she is too. We reviewed my results; the CD4 now stands at its highest - 740 - and my percentage had gone up to 44. The doctor said (and I quote) that these particular results were "encouraging", and "bordered on the normal range". Whatever the "normal range" is.

Less good was my blood pressure (188 / 103) and my cholesterol, which although it had gone down, was still 5.3. She is going to ask my GP to prescribe me an increased dose of Atorvastatin. Apparently my kidneys are now leaking phosphates, which worried her a bit. Also, I had very little Vitamin D in my system. And weirdly, for some reason, I returned an inconclusive result for a Hep C test - which had hitherto been consistently negative, and unsurprisingly too, as I do not use drugs and have not had sex since 2006. I haven't got a clue what that result is all about.

The bulk of the lengthy meeting, however, involved a discussion about my reactions to Atripla. In contrast to what the CNS said, she feels that the side-effects (constant depression, nightmares etc) do need to be addressed, and she is taking my case to supervision. To cut a very long story short, her recommendation is that the clinic replace the Efavirenz either with Nevirapine or Atazanavir / Ritonavir, with a future consideration of switching the Truvada to Kivexa as well.

These things are just names to me, and who knows how they will affect me. Apparently there will be side effects: what those are, she said, vary from patient to patient. The doctor was at pains to assure me that these clinical decisions are not cost-driven; that the ultimate choice will be mine; and that it is, actually, possible to return to Atripla should these new regimes not work.

I would welcome your thoughts on this one, please: stick or twist?


Offline Zohar

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Re: A suggested change in medication
« Reply #1 on: June 04, 2011, 09:55:16 AM »
I've already posted in your Mental Health thread but I will just reiterate the importance of switching away from Sustiva. Your doctor is correct in that all drugs carry risks of side effects and that there's no way of knowing in advance how any specific patient will be affected. I just think it's crucial that you stop taking Atripla as soon as possible. I've taken Nevirapine and Truvada which caused skin issues for me, and would have perhaps continued with them were it not for that. I certainly didn't have any psychological problems whilst on that combination.

I think when you change you should perhaps brace yourself for things like nausea, headaches, loose(r) bowel movements, mild rashes, and fatigue, which ISN'T to say that any of these things WILL happen to you but just that they aren't uncommon when commencing a new HIV regime, and often will diminish over time - sometimes after just a few short weeks. If you don't experience any side effects, then that will be a nice bonus for you.

As you will know, there are lessons on all the HIV drugs on this website so you could perhaps read through those and weigh up the options.  If you have no pressing preference then why not ask your doctor which combination she would suggest and run with that? All the drugs work to supress viral load and boost CD4 count so unless you have resistance issues, which you should have been tested for, there's no reason why any of the drugs shouldn't work for you.

Speaking of doctors, I find it slightly troubling that you mention seeing a new doctor 'virtually every time'. Why is this? It's important that you build up a relationship with one doctor so that they are fully aware of your history and you don't have to constantly explain your issues over and over. There  is only limited time in your consultations, and you need your doctor to be up to speed from the outset so that all issues can be convered and things don't get overlooked. In my view, constantly seeing different doctors can lead to substandard care.

Regarding your low level vitamin D, which is not uncommon amongst HIV patients, and the doctor can prescribe once monthly supplements which you should ask for.

I look forward to hearing of your next consultation with the same doctor before too long, and the new treatment you have settled on.
''Poor is the man whose pleasures depend on the permission of another.''

Offline Ann

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Re: A suggested change in medication
« Reply #2 on: June 04, 2011, 10:05:06 AM »
Mark, as you might remember, I'm not on meds (yet). However, I do have my first combo picked out and it's the atazanavir/retonivir/truvada combo you've been offered. (I don't want to take Sustiva.) It seems to be a well-tolerated combo for most people.

You can read more about any of the meds in the med section of the website.

I'm really happy for you that this doctor actually listened to you, particularly after what the nurse specialist told you. I also often see different doctors - The Royal Liverpool is a teaching hospital - but I also have a consultant who ultimately oversees my treatment. If I ever have any serious concerns to discuss during an appointment, I can request to see him. If I'm not having any problems or whatever, I'm happy to see one of the registrars. You might want to find out if you can operate in a similar way at your clinic.

Again, I'm really happy to hear the doctor listened to your concerns and took the situation seriously. It feels good to be heard, eh?

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Offline MarkB

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Re: A suggested change in medication
« Reply #3 on: June 04, 2011, 11:07:25 AM »
Again, I'm really happy to hear the doctor listened to your concerns and took the situation seriously. It feels good to be heard, eh?

My bum had scarcely hit the chair before she was onto the depression thing: I reckon they read this website ...


Offline Assurbanipal

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Re: A suggested change in medication
« Reply #4 on: June 04, 2011, 11:19:50 AM »

I'm so glad they listened to you.  I hope you can get to a combination that works much better for you.

There's been some posts on the forums from people who have switched the sustiva to nevirapine (also known as viramune) recently and been happy with it.

And a lot of people seem quite happy with atazanavir (also known as reyataz).  Back in 2008, when I was thinking about moving off Kaletra to Viramune because of cholesterol issues, some very knowledgeable folks suggested Reyataz instead  -- in the end it took a few more tries to get my doctor to change meds and it wound up neither.  But in any event, moving off Sustiva sounds like it will be a huge improvement for you -- and there is at least the potential for some cholesterol improvement.

Be well


5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline eric48

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Re: A suggested change in medication
« Reply #5 on: June 04, 2011, 04:34:15 PM »
Whatever the "normal range" is.
.... with Nevirapine or Atazanavir / Ritonavir, with a future consideration of switching the Truvada to Kivexa as well.


I am on nevirapine/Kivexa and you can find my experience with it here:


I am not an advocate for this or that combo, since it is such a complicated choice. I just hope that you will find in the above thread enough information on my personal experience. (it is a bit long, but reviews several aspects with quite a few external links)

IMHO, switching to Nevirapine (IF you can stand it ...) might be a smart choice.

I have addres ed the question of normal range in that post (this is the first of a series of 2 or 3 that I am preparing on the subject)


Hope this helps

NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly


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