New regimen results

[Assurbanipal]

This August, motivated by low but detectable HIV viral loads, high lipids, bone mineral density problems and rising blood sugars, switched from Truvada to Epzicom/Isentress.  This thread had the details http://forums.poz.com/index.php?topic=26412.0.    

I kept Kaletra for a while, temporarily going to a 4 drug combo until I got back to an undetectable viral load. but dropped it out once I was undetectable again in late September.  

Now have a full set of labs 5 weeks after dropping Kaletra and 9 weeks after dropping Truvada and it is mainly good, but there are some troubling parts.

First the good:
 - Viral load is undetectable even without Kaletra.  CD4's in the 600's although the percent has dropped back down to 26% or so from the first set of results.

 - Total cholesterol and blood sugar levels are back in the normal range.  Triglycerides are still a little high but have dropped very significantly... and the good (HDL) cholesterol is up  .

 - NTx score has dropped from 41 to 7, so I'm probably no longer destroying bone faster than I build it -- vitamin D is back in the normal range too.  The NTx change could be solely from the actonel, vitamin D, and calcium I'm taking, but I suspect dropping the tenofovir was helpful too.

So, feel like there's progress on the HIV control and cardiac/diabetes/osteoporosis issues.


The troubling:
- Been having increased muscle pain from running and using the stepper, so testing Creatine kinase (CPK) levels to make sure Isentress is not raising them.  The first test, after a month on Isentress, they were in the normal range at 118;  6 weeks later they are high at 228.  Muscle cramping is mild and inconsistent but seems to be increasing lately.

- Liver function levels (ALT and AST) are up from the old normal (about 16) to about mid-30's.  Still in the reference range, but quite noticeable when graphed.  It looks like it has reset to a new level on the two tests post Epzicom/Isentress.

- Protein and GFR are just barely out of range now as well.

At this point I'm happy I switched, but a little nervous that I may not be able to stick with Isentress.  Have another set of labs scheduled for December; am hoping things level out.  Adviee, as always, appreciated.

A


edits -- more white space!

[tommy246]

Sounds like you havre more good news than bad news there . seems like youve sorted some major problems i think things will be even more clearer on your next results as the body takes time to re-adjust, good luck.

[Assurbanipal]

Well, just got off the phone with the ID doc.  She doesn't like elevated CPK with muscle cramps and wants me to talk to the endocrinologist about dropping the statin (Pravachol). 

Otherwise, she thinks maybe swap the Isentress for Sustiva?

[Assurbanipal]

Well the endocrinologist agrees about dropping the statin so goodbye Pravachol (for now at least)!

Interesting, both the ID doc and the endocrinologist seem to think that the cholesterol is likely to keep going down for a while after stopping Kaletra -- for 3 months or so.  So the trick will be whether the increase from stopping Pravachol will be less than the decrease from stopping Kaletra...

Still, fewer drugs, what is not to like?   

[tommy246]

Dont know if you take it but two omega 3 tabs a day will have your trigs and cholest nosediving, every heart specialist in the world take this good benefits for arthritus as well

[Assurbanipal]

Thanks Tommy -- I'm using fish oil capsules now.

[Assurbanipal]

Doc called -- looks like I am getting an "F" in Isentress.  Went in for labs Monday morning and she got results faxed to her today.  Been off the statin a few weeks and the CPK levels have gone up to over 1000 (they were a little over 200 on the first blood test 5 weeks ago).

Not 100% surprised -- I still have a lot more muscle pain / ache / cramping than I did before Isentress.

And apparently the liver function tests were not too good either.


So I'm to move to Prezista/Norvir (plus Epzicom) tomorrow.  And in the meantime "Drink LOTS and LOTS of water"  (One gets the impression she is a bit nervous about these results)


Rant time:  I hate it when she has the results and I haven't gotten a copy in the yet.  I like to research the implications myself so we can have a discussion.   Especially since she always seems to have left them somewhere other than where she is when she calls me.

Today we talked about Sustiva, Prezista and Reyataz and settled on Prezista largely because it is stronger than Kaletra and she was worried about the prior low level viremia.

Oh well.  Onward... the view is still better from this side of the grass.

[Miss Philicia]

I'm sorry you're dealing with all that, but it will get sorted out somehow.  I empathize with how unsettled one can be when cycling through three med regimens in a six month time period.  You seem to be handling it very well though.

[Inchlingblue]

The important thing is that you are so well-informed and on top of things so you can catch any problems and nip them in the bud.

Prezista/Norvir/Epzicom is an excellent combo. I have a good friend on Reyatz/Norvir/Epzicom (similar), and he's doing great. No side effects and great numbers  (he doesn't even have to take Norvir with his combo but he does, I guess for good measure). This could be "the one" for you, at least for a while.

I went in for labs yesterday and mentioned elevated CPKs, since I'm on Isentress, and my doctor said it's accompanied by muscle pain/cramps, etc., so since I don't have those symptoms I don't think he even checked for CPK levels. He said there was no "protocol" on it. Maybe next time I go for lab work I'll insist he check them just to see.

I have a question: I agree it's good to drink decent amounts of water (especially for kidneys) but do you know why she recommended lots of water for you at this particular time?

[Miss Philicia]

The CPK level is just the creatine reading on a lab, right?  Or is it a different test/measurement?  I know that my last labs, which I failed to obtain a copy of because my doctor was rushing to Princeton for a talk, had this elevated but only slightly and I've never had it outside of normal previously.  I've had no muscle pains though.

Otherwise I'm also on Prezista/Norvir, actually a year and a half longer than Isentress.  It's very tolerable and I had no initial side effects from it other than some diarrhea from the Norvir which I have controlled.

[Inchlingblue]

The CPK level is just the creatine reading on a lab, right?  Or is it a different test/measurement?  I know that my last labs, which I failed to obtain a copy of because my doctor was rushing to Princeton for a talk, had this elevated but only slightly and I've never had it outside of normal previously.  I've had no muscle pains though.

Otherwise I'm also on Prezista/Norvir, actually a year and a half longer than Isentress.  It's very tolerable and I had no initial side effects from it other than some diarrhea from the Norvir which I have controlled.

Here's a Q & A from Gallant (I'm the one who asked the question):

Creatinine & CPK

Joel E. Gallant, M.D., M.P.H.

Posted on Aug 28, 2009
I know that serum creatinine levels are used to determine GFR and helps in measuring kidney health/function.

I also read that there is a small percentage of people on Isentress that experience elevated CPK levels (creatine phosphokinase).

My question is: are these two different things (creatinine and CPK)?

On Aug 29, 2009 Joel E. Gallant, M.D., M.P.H. replied:
Yes, despite the similarity in names, they are very different. The creatinine measures kidney function. The creatine phosphokinase (CPK) looks for muscle breakdown.


LINK:

http://www.hopkins-hivguide.org/q_a/patient/laboratory_tests/other_lab_tests/creatinine___cpk.html?contentInstanceId=500208

[Miss Philicia]

Right, OK.  So I don't need to wonder about it if I'm not having any issues, but if I do I know to ask for this test.  Thanks.

[Assurbanipal]

Sorry to post and vanish ... got disgusted and decided to go Christmas browsing.  I have invested $9.60 in some very cheery red poinsettias and am feeling much more chipper

The concern over CPK levels started because I had a lot of muscle pain and cramping -- and then on the first test it was a little high so we stopped the statin.  On the new test it has at least quadrupled (don't have the number).  The muscle aches have gone down, but I'm still not sleeping much every third night or so and its been a couple months now.  (I wish dawn came a little earlier this time of year.)  But being on Epzicom, given that the heart is a muscle ... clearly one could draw a picture for concern.


____________

Thanks for letting me vent guys -- Miss P I think Inchling answered your q's? 

Inclhling -- she said the liver numbers were bad too -- and I had some marginal bad kidney readings on the last test also (and she couldn't remember what the fax she left in the car said about the GFR this time) that's what the water is all about I suspect .

But ...Decaf counts as water  eh?

I'm not a nervous type, but the discussion about whether I needed to switch this afternoon or could wait til tomorrow , and the instruction to drink a LOT of water was p**ing me off a bit.  I kept thinking that if I were a nervous type I'd be going nuts!  But you know, I came out of the hospital convinced that death was a part of the future and all I was really worried about was that it be fast, painless and leave realtively little mess behind -- and that makes one pretty mellow about this stuff in some way.  I'm mainly frustrated that it TAKES SO MUCH TIME!!!!

(and that I don't seem able to focus on a new job or career too well when every week it feels like there's a new thing going on)

I'll stop now :-)

[Inchlingblue]

Right, OK.  So I don't need to wonder about it if I'm not having any issues, but if I do I know to ask for this test.  Thanks.

The "creatinine serum" is part of one's regular lab work when one has HIV, at least my doctor always does it. It's used to measure kidney function.  That might be the one you referred to earlier that was a little high, although you don't have copies of the labwork?

As far as the CPK, this can be elevated with a small percentage of those on Isentress (such as Assurbanipal) and I suppose it's accompanied with muscle aches but who knows? Maybe it can still be elevated even if one does not have those symptoms?

One of the reasons I didn't insist, and I know this is stupid, is that I didn't even want to know right now. I just started Isentress in July and I'm not ready to deal with having to go off it if CPK was high but I suppose I can't ignore it and next time I'll ask him to check it and see.

Assurbanipal: You'll come through this fine. I can imagine how frustrating it must be.

I hope you're staying away from NSAIDs if the kidney readings are a little high. Drinking lots of water for the kidneys makes sense. Prezista/Norvir/Epzicom sounds like a winner to me. Have you seen the recent studies calling into question the abacavir/cardiac connection?

LINK:

http://www.aidsmap.com/en/news/B125FC65-35B6-4347-9394-306E6B1F09F6.asp