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Author Topic: Teach and old dog new tricks  (Read 1183 times)

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Offline aztecan

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  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Teach and old dog new tricks
« on: June 27, 2010, 04:46:13 PM »
Just wondering if someone (maybe Newt?) with some savvy regarding meds might be able to provide some suggestions.

As I mentioned in the LTS forum, I am again having trouble with my CPKs, or CKs, as some refer to them

They aren't too bad as yet, just in the neighborhood of 800, and nowhere near the 2,700 + they were a year ago.

But they had dropped back down to acceptable levels of between 200 an 400 for quite a while.

At the present time, I am taking Isentress and Truvada and I am having trouble with myopathy. At the present time, it doesn't seem to be affecting my heart, which is something of a relief.

Now, for a bit of history. In the past, I have taken:

Lexiva boosted with Norvir, (dropped because of insane lipid levels)

Sustiva (dropped because the side effects were driving me insane.)

Reyataz, with the Norvir boost, which I had to drop because I have GERD and have to take a PPI.

Combivir, which I took for 13 years as either a single pill or its components, AZT and Epivir,  but dropped to switch to Truvada.)

Crixivan, which I took for 11 years but dropped to switch to Sustiva, although in retrospect, I think I would have preferred the kidney stones to the CNS side effects from the Sustiva.

Saquinavir, the original formulation that had to be taken with 8 ounces of grapefruit juice three times a day. Did I mention I have GERD? This is the same drug, later reformulated as Fortovase, that led to a number of people developing resistance to the entire PI med class. I didn't, however.

More than a decade on the old PIs - and possibly the old nukes - left me with kidney stones, which have subsided for the most part, neuropathy in both feet, which hasn't subsided, lipohypertrophy (that's a buffalo hump for you novices, not to mention chipmunk cheeks and a horse collar neck, along with a Crix belly), and Lipoatrophy (skinny legs, face and arms, but not as bad as it once was).

As a result of many years of hyperlipidemia, (high cholesterol at least partly caused by my meds), I was diagnosed with NASH (non-alcoholic steato hepatitis), although now the liver, which was somewhat enlarged, thus the diagnosis of hepatitis, seems to be behaving itself and the doc said I probably would be diagnosed with hepatic steatosis, fatty liver, at this point.

The above improvements came about after switching to Isentres/Truvada.

My doctor said it could be the Truvada or the Isentress causing the myopathy I am now experiencing.

The idea has been broached to seek out another regimen that would allow my CPKs to drop back to normal and reduce or eliminate the myopathy I am now experiencing.

The only problem is we are stuck about what I might switch to.

My doctor is reticent to place me back on PIs again because of the problems I had with my liver and hyperlipidemia. I have to watch my diet even with the Isntress/Truvada, and my use of statins has been problematic.

As far as the nukes go, Combivir is probably not a good choice because it also can cause myopathy and it is more prevalent in those who have been taking meds for an extended period.

Also, having some degree of peripheral neuropathy already extant, I don't want to aggravate the situation and cause it to worsen. Trust me, it is bad enough as it is.

The only suggestion to day, from a specialist in another city,  was to switch me off of Truvada and on to Selzentry and Fuzeon, which I flatly refuse to do.

Any ideas?

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline newt

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  • the one and original newt
Re: Teach and old dog new tricks
« Reply #1 on: June 27, 2010, 06:27:46 PM »
Newt will think about this, prorbably consult more expert people, and comment tomorrow.

- matt
"The object is to be a well patient, not a good patient"

Offline Tempeboy

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  • Like St Francis of Assisi I am wedded to Poverty
Re: Teach and old dog new tricks
« Reply #2 on: June 28, 2010, 12:54:53 AM »
Hey Aztecan,

What sort of myopathy are you experiencing?  Do you take prescribed statins?  One of their side effects can be muscle breakdown resulting in elevated CK's.

How is your renal function with tenofovir? Tenofovir related kidney issues can elevate CK as well.

Have you considered Etravirine or even Nevirapine?

Fish oils and inulin fiber supplements, and even alpha lipoic acid might help with your liver - some even advocate Milk Thistle.
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline aztecan

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  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: Teach and old dog new tricks
« Reply #3 on: June 28, 2010, 10:21:15 AM »
Hey Aztecan,

What sort of myopathy are you experiencing?  Do you take prescribed statins?  One of their side effects can be muscle breakdown resulting in elevated CK's.

How is your renal function with tenofovir? Tenofovir related kidney issues can elevate CK as well.

Have you considered Etravirine or even Nevirapine?

Fish oils and inulin fiber supplements, and even alpha lipoic acid might help with your liver - some even advocate Milk Thistle.

Hey Tempeboy,
I don't take any statins. The last time I did it sent my CPKs to nearly 3,000.

My kidney functions are normal, no indication of problems there.

Nevirapine isn't a good option because my CD4s are too high and it is contraindicated in men with CD4s in excess of 400 at the onset of treatment, although that may just be for the treatment naive. But I also have already had trouble with the liver and my doctor is cautious.

I already take 6,000 mgs of fish oil, plus alpha lipoic acid and milk thistle.

The myopathy is generally in my legs and is most noticeable when I am inactive, like when I am sitting, driving or laying down.

It is something of a vexing problem for me. I may end up just learning to live with it.

HUGS,

Mark
« Last Edit: June 28, 2010, 10:24:36 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline newt

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  • the one and original newt
Re: Teach and old dog new tricks
« Reply #4 on: June 28, 2010, 12:39:46 PM »
Hello

This is primarily a metabolic (mitochondrial) question...

1. Age, well old dog, you said it, it might just be age, or age in the presence of long-term HIV, however well controlled now.

2. HIV meds, aside from the tenofovir there is not much to say about changing, and while technically you might have many options, I am guessing that realistically there are few that are not gonna be more of a pain in the ass than the muscle problems. But reducing the nukes may well help. You might try etravirine (Intelence) instead of tenofovir.

3. See a decent nutritionist perhaps? One who does bloodwork not scented candles. Supplementation with acetyl-L-carnitine, and in certain circumstances, lysine may help, if you are low on carnitine, a deficiency which contributes to muscle disorders.

Sorry, this isn't much to go on

- matt

"The object is to be a well patient, not a good patient"

Offline aztecan

  • Member
  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: Teach and old dog new tricks
« Reply #5 on: June 28, 2010, 03:10:36 PM »
Hey Matt,

Thanks for the help. You kinda went where my thinking was going regarding the causes and effects, etc.

I will bring up the Intelence with the doc and the nutritionist as well.

My best guess is I would be either sticking with what I have been taking or just switching out the Tenofovir.

I am dropping the red yeast rice I used to take for cholesterol. Apparently, there is a small chance it could react this way, although usually it involves people of Asian descent, which I'm not. But, at least it is something I can try.

Thanks again for your help.

Oh, by the way, I still miss your shirtless avatar!  ;)

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline newt

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  • the one and original newt
Re: Teach and old dog new tricks
« Reply #6 on: June 28, 2010, 04:34:34 PM »
Ah yes also to say in relation to the nutrition thing, drop the gluten? perhaps

Myopathy associated with gluten sensitivity.
http://www.ncbi.nlm.nih.gov/pubmed/17143894

for example

(This suggestion just in courtesy of an HIV specialist dietician)

- matt
"The object is to be a well patient, not a good patient"

 


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