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Author Topic: motor neuron disease and HIV  (Read 3098 times)

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Offline thinkertwo

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  • Posts: 23
motor neuron disease and HIV
« on: April 08, 2009, 02:42:14 PM »
First time...I'll try to keep it short.  My HIV diagnosis was discovered when I started having lower motor neuron symptoms (muscle vacillations, weakness, thinning muscles in the legs and arms).  Several EMG, muscle biopsy, confirm situation is getting worse.  This has been going on for 3 years.  I'm on Reyataz, norvir, and truvada.  Since going on meds. my condition is neurological is declining; stairs, walking...very weak.  Doctors are split, HIV Neurologists feel this is a rare manifestation...ALS docs think I may have a double whammy... ;  I'm declining and have seen two medical teams.  They both strongly feel I should not change meds.  My research shows that everyone all maybe 50 with this condition related to HIV once treated with HAART stay the same or get better. 

Please is there anyone else with this problem.  I'm not working or doing anything now...just kind of waiting to vanish...

Offline thinkertwo

  • Member
  • Posts: 23
Re: motor neuron disease and HIV
« Reply #1 on: April 08, 2009, 02:48:34 PM »
By the way, my viral load and cd4 are great; undetectable and 800.  I don't excersise because I feel weak for a day after and there is no other treatment suggested for me.  I am convinced that since I went on HAART I've declined.  I think the side effects of the drugs are part of the problem.  Does anyone know any Doctor or study that I can look into?

Offline Peter Staley

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  • Founder & Advisory Editor, AIDSmeds.com
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Re: motor neuron disease and HIV
« Reply #2 on: April 09, 2009, 10:01:05 AM »
thinker -- you might ask your docs to do some research on HIV meds with good central nervous system (CNS) penetration.

Here's a 2003 (thus missing some of the newer drugs) take on this issue:

I asked Tim Horn this question, and he said "that Viread, Videx, Viracept, Norvir, Invirase, and Aptivus have little or no CNS penetration; Epivir, Emtriva, Zerit, Sustiva, Lexiva (unboosted), Crixivan (unboosted) and Reyataz (unboosted) have moderate CNS penetration; and Retrovir, Ziagen, Viramune, Rescriptor, Kaletra and Norvir-boosted Reyataz, Lexiva, & Crixivan have the best CNS penetration."

He also said "the clinical utility of using a drug that crosses the blood-brain barrier isn't all that clear. It's unknown if it further slows the emergence of resistance or if it PREVENTS CNS problems. We do know, however, that they're useful for those with bona fide CNS symptoms."

So it looks like sticking with Reyataz+Norvir is probably smart, but you might ask your docs about switching your nukes to ones with better CNS penetration.  Ask about switching your Truvada with Epzicom (Ziagen+Epivir). 

Before starting Epzicom (or Ziagen), please note this:

Approximately 5 percent of people who take Ziagen are allergic to it and can experience a "hypersensitivity reaction." This can be serious and may require that Ziagen therapy be stopped. A hypersensitivity reaction usually appears during the second week of therapy, but it can take as long as six weeks to notice any symptoms. The most common symptoms are fever and rash, followed by headaches, stomach upset, feeling tired, sore throat, cough, and shortness of breath. These symptoms usually get worse over time and it is important that you report them to your doctor immediately.

An inexpensive laboratory test is available to look for an inherited gene, called HLA-B*5701, that has been linked to the hypersensitivity reaction in HIV-positive people taking Ziagen. While not all people with this gene experience an allergic reaction while taking Ziagen, most do. In turn, if you are tested and found to have this gene, Ziagen (or other medications containing abacavir) should either be avoided or used with caution. If you and your doctor are thinking about starting Ziagen or another abacavir-containing medication for the first time, be sure to discuss this genetic test.

Offline thinkertwo

  • Member
  • Posts: 23
Re: motor neuron disease and HIV
« Reply #3 on: April 09, 2009, 07:35:40 PM »
Thank you so much for all this information.  I will be looking into all of these suggestions.  I can honestly say you have given me a renewed sense that something may make a difference. 

I've been in denial for a long time.  Wish I found this site a while back, would have saved me lot's of co-pays...  :D I've learned so much in the last few days. 8)  I'll keep you posted with any discovery or change. ;D


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