POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: aztecan on May 24, 2011, 01:38:41 pm
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I am posting this here at the advice of our Ann.
I am hoping someone (Newt maybe?) may have an idea for me.
I had my labs drawn yesterday morning. The doctor called yesterday afternoon.
You know the news isn't going to be good when you receive a personal phone call from the doctor, who is asking you to drop by.
It seems my CPKs have continued to climb. They haven't been normal, which would be below 200, for a while now. They are now up to 1,173,
At least I know where the muscle pain and weakness are coming from.
I am not on a statin, which did it the last time. So, we are looking at other causes.
Niaspan doesn't do it, neither does fish oil.
But, apparently, it has been seen in people taking Truvada, which I , of course, do take.
I was also reading the fact sheet on Isentress, and apparently elevated CPKs may also be an issue with it.
Guess it looks like another med switch
The doctor is going to contact a pharmacologist to see if she has any recommendations.
I have no resistance, as far as I know, to anything. However, Sustiva and I don't get along, so that is out.
I could get checked to see whether Abacavir would work. But I would still need another nuke. Hmmm, I wonder which of the components of Truvada causes the CPK elevation? I can't seem to find any info that particular thing.
Perhaps, if need be, I could combine Abacavir, if I can take it, with either Emtriva or Viread, whichever it is that doesn't cause my problems. Or, maybe, combine Abacavir with Epivir, the latter of which I took for 13 years without any problems.
I am reticent to go back on Combivir. It is an outstanding drug, but the AZT component may have contributed to the body shape changes I have experienced.
Ditto the PIs, plus I just managed to get my lipids to at least a tolerable level, and PIs jack them up something fierce.
Hmmm, I could get the test done to see if Maraviroc would work for me.
Then, there is Intelence and Edurant, the two more recent additions to the non-nuke category.
I guess we'll figure something out. I really don't want to switch, but I don't think I can go on too long with the muscle deterioration now taking place.
HUGS,
Mark
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Hello, newt calling :-)
It is the tenofovir in Truvada possibly affecting your CPK. However, it may also and rarely be the FTC (Emtriva). Or especially and obscurely the FTC when combined with tenofovir. Both these drugs are dealt with mainly by the kidneys. I am more inclined to suspect tenofovir.
It is also possibly the Isentress. The phase 3 studies had reports of spikes in CPK (okay, one temporary one), and there have been many post-marketing reports. Since it's so new it's unlikely the full extent of this side effect is known.
So, me, what would I do?
- Get kidney function checked properly, ie to see how well the work (prob by estimated glomerular filtration rate). This will inform whether you can use which nukes.
- Consider abacavir - if you can take it - and 3TC (Epzicom) as a nuke backbone
- Muse. The 3rd drug could be all sorts...
The new non-nukes seem ok, although Intelence has something of the Sustivas about it for some people (more fatigue than dreams it seems), the new Johnson and Johnson one, well it's good on paper but so very new (maybe you like new). Do not discount a switch to Viramune (nevirapine) if your liver is okay and the change is handled with cautious monitoring (the CD4 cut-off doesn't seem to apply in people with suppressed viral loads).
If you have the CCR5 tropic virus you could look at Selzentry (maraviroc). Nevirapine can be used with maraviroc, so it is possible to construct a 3 drug combination with 1 nuke if all other factors are favourable.
Of the PIs, Prezista (darunavir) uses least (100mg) of Norvir booster, and likewise Reyataz (atazanavir). Most people can probably do atazanavir with 50mg a day (latest research from 2011 Retrovirus conference, but practical difficulties getting this dose). Or, straightforwardly, atazanavir unboosted when used with abacavir/3TC (was 1st line recommended option once...). Losing the Norvir probably negates most of the lipid problems connected with PIs (but better to dose 2 x day if you do this with atazanavir).
And finally, as a serious and ever so slightly brave option, there is boosted Prezista plus one nuke. Maybe abacavir (cos it's strong and dropping the FTC/3TC removes any stress on the kidneys, or 3TC if abacavir is ruled out by the allergy test).
I think my Haddock Mornay is overcooked now.
Hope this helps.
- matt (combined and interactionalised) the newt
Edited for spelling
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If you have the CCR5 tropic virus you could look at Selzentry (maraviroc). Nevirapine can be used with maraviroc, so it is possible to construct a 3 drug combination with 1 nuke if all other factors are favourable.
This is a side question: do you mean Maraviroc + Nevirapine+ 3TC is a legid option for someone who has CCR5 tropic virus ? I did not know...
If so, I may want to consider it (for my self) as an alternative (should one be needed...)
Thanks
Eric
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Just something to add to Newt's excellent advice: I'm sure I remember reading that the K65R mutation occurs more frequently in combinations containing abacavir and tenofovir and so they should never be used together.
I'll now try to find a source for that advice...
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Hey Azzy,
Why not Epziccom (ABC), Prezista and Norvir ? I loves it.
-Will
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K65R mutation occurs more frequently in combinations containing abacavir and tenofovir and that they should never be used together.
One of my very first posts was on this topic and I believe I argued for certain favourable circumstances when then could be effectively used together, tearing off Tim Horn no less, who didn't know me from a used cotton bud :- ). But, generally agree, if avoidable, don't do this pairing.
- matt
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I had CPK's right around there maybe 50-100 higher on Isentress and Epzicom -- prompting the call from my (nervous) doctor that said I had to swap out the Isentress for Prezista/Norvir. The next day. ;D
Isentress seemed to be screwing up kidney and liver markers for me too -- at any rate I've not seen any issues with those markers on Prezista/Norvir + Epzicom. Only issue is cholesterol issues with a PI? But maybe if you got on the once a day Prezista -- that has the least Norvir.
But yeah, Epzicom has been pretty easy.
Good luck
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Thanks all of you for the help!
The Epzicom sounds like a good option, providing I can take it. The doctor ran tests to check my kidneys yesterday, so that should help guide my course.
Newt, I thought about some of the PIs, but, Atazanavir is probably not workable because I take a proton pump inhibitor. I guess it needs the stomach acid to work correctly.
The Prezista might be an option. I was on a PIs for about 12 years, Crixivan, Reyataz and Lexiva, the last two boosted with Norvir. Problem with them was how it affected my lipids - and the fact I think the Crix gave me my humpette and horsecollar neck.
I didn't know that about the nevirapine. That may be something worth exploring too!
One option might be to go off meds until my viral load actually reaches 1,000 or more and haver a GART done. I don't relish that, though. I haven't had a measurable viral load since July of 1996, aside from one blip when it came in at 61 when the blood sample was mishandled.
This has given me some food for thought and a foundation to begin discussing this with my doctor.
Thanks again all of you.
HUGS,
Mark
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The Epzicom sounds like a good option...
I didn't know that about the nevirapine. That may be something worth exploring too!
While not everyone can take or accept Viramune or Epzicom, all I can say from my experience is that it may a very good combo option for the TG/Cholestherol obsessed person like myself.
my experience with it related there:
http://forums.poz.com/index.php?topic=33062.0
As I commented on the last posts on that thread, it may be not the most popular for first line , but, for those who can take it, it may become more popular as a maintenance regimen.
Would love to welcome you as a pill buddy -;)
Eric
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Just an update.
Had blood drawn to do the Abacavir test. Doctor still not too keen on it, but the pharmacologist recommended it right off.
Newt was right, as I find he usually is.
Just waiting for some other discussions with other experts.
Labs came back OK.
Viral load < 20, CD4 1,162 (40%)
HUGS,
Mark
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Well, the doc called today to let me know my results were regarding Abacavir.
The test result is positive, which means I am susceptible to the nasty reaction to Abacavir (Ziagen).
So, that option has been ruled out.
The doctor had me come in to go over some information he was putting together. He is presenting me to a conference of HIV specialists in the state and wanted to make sure he had all the history down correctly.
Among other things, he listed the meds I have taken during the past 15 years. He also listed the major side effects I have had, including my buffalo hump, et al.
So, it is still a wait and see type of situation. In the meantime, I will continue with the Isentress/Truvada. I can manage the muscle pain, the hard part is the cramping.
I can't stretch and have to be careful when I lay down because extending my arms or legs, or just turning too rapidly, can result is my jumping out of bed trying to work out some rather severe muscle cramps.
I also still have the weakness. I have things I need to do at home, but just don't have the strength or energy. I may have to start forcing myself to do things and just take it slowly.
Maybe I can find a young, virile and willing young man - to help with the heavy labor around the house. ;)
I am looking forward to see what regimen they dream up.
HUGS.
Mark
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hmmm
Isentress, Viramune, 3TC?
- matt
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It is still not clear to me why you are fingering the Truvada instead of the Isentress? For me, Isentress was the clear culprit in the high CPK's and muscle problems and it (rhabdomyopathy) is listed as a reported adverse reaction in the package insert.
But the only mention of muscle-related issues in the Truvada prescribing info is related to lactic acidosis and kidney issues.
So it would appear that muscle related and high CPK items are relatively more of an issue with Isentress than with Truvada.
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This is a good point, the only way to find out is to compare and contrast (ie take one not t'other).
Also, do not discount an unexplained/little understood effect of a a drug pairing. It might be tenofovir AND Isentress, one on its own may be okay.
In my experience experts docs are better on resistance etc and worse on side effects, so hope the conference throws up a workable suggestion.
- matt
Edited for spelling
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Exit Abacavir...
What did your doc said about Viramune ?
V&T could be nice too...
I am on V&E (aka V&K), but still wondering if V&T would not have been a better choice for me...
Eric
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It is still not clear to me why you are fingering the Truvada instead of the Isentress?
Well, one reason is many of the reported side effects are not showing up in the ARV data bases the doctors often refer to check side effects, interactions, etc.
Also, my CPKs have been elevated for a long time, at least since I was taking Truvada and Lexiva with a Norvir boost.
But, at the time, we were also trying to find a statin that would work for me, which caused me no end of problems with the CPKs.
Another reason is both he and I are reluctant to go back on any of the PIs again. I fight my lipids constantly, cannot take statins, and the PI jack them up through the roof. Also, I have existing lipohypertrophy, which might well be exacerbated by the PIs, since it was probably Crixivan that caused it in the first place.
So, without a PI, I am left with either the nukes, non-nukes, integrase inhibitors, fusion inhibitors, and entry inhibitors, if I pass the genetic test for the latter class.
I cannot take Sustiva because of the ongoing CNS side effects I suffered even two months after starting it.
If I had no other options, I could go back on Combivir, but the AZT component also is suspect for some of the lipoatrophy I have experienced.
This is a good point, the only way to find out is to compare and contrast (ie take one not t'other).
Also, do not discount an unexplained/little understood effect of a a drug pairing. It might be tenofovir AND Isentress, one on its own may be okay.
In my experience experts docs are better on resistance etc and worse on side effects, so hope the conference throws up a workable suggestion.
- matt
Yes, it will be interesting to see what happens after I do start something else.
Exit Abacavir...
What did your doc said about Viramune ?
V&T could be nice too...
I am on V&E (aka V&K), but still wondering if V&T would not have been a better choice for me...
Eric
The doctor didn't like the idea of Viramune because of my history with liver issues, specifically hepatic steatosis and the beginnings of non-alcoholic steato hepatitis. Viramune is known to cause liver problems in some people, and he doesn't want to augment my list of complaints, especially since my liver is pretty much back to normal after my switch to Isentress.
HUGS,
Mark
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This sounds like a lot. Sorry.
Is the new nnrti (edurant) an option? Maybe with combining a couple nnrti's with an enty or integrase inhibitor, possibly an nrti sparing regimin? Hope it works out!