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HIV related AVN (Avascular Necrosis) - Bone Death
      #15539 - 02/10/01 11:46 PM

I have been positive since 1987, but under treatment only since 1997. In July 1997, I was hospitalized with PCP, a viral load of 160,000,000 and a CD4 count of 8. Since the beginning of the treatment, my CD4 has risen to normal (even up to 969 at times), and my viral load has been undetectable. My HIV treatment has always been without complications, until February 99 when I suddenly started with acute pain on my left groin. The pain was crippling and never went away. After months of pain, which eventually began to spread to other parts of the body (joints), I was diagnosed with AVN (Avascular Necrosis) which now has affected both hips, both knees, and both shoulders. At times I was told that it might be a complication of Protease Inhibitors - other times that it could be a complication created by the virus.

Is there anyone out there who has experienced increased joint pain, or who knows of others who have had simmilar symptoms as mine? Please message back and spread the word - the more information we can obtain on this topic, the greater the chances that we could draw attention to it and inspire someone to find a solution for it! Thanks.... :o)

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Re: HIV related AVN (Avascular Necrosis) - Bone Death new
      #15657 - 02/16/01 11:30 PM

I wish I could steer you towards answers, but alas........
Your message helped me a lot. My story reads like a carbon copy of yours. My hip pain started in 91 and in 96 I blew out a disk - they said my type of disk injury was impossible without trama but I never had so much as a bad sneeze. In early 98 I started having trouble breathing and in August we finally got the PCP diagnosis. I started on Combiver/Sustiva, viral load came down and CD4 is slowly climbing. In 99 the other hip and both knees joined in. With all the joint pain and spinal cord damage I wanted to give up. No one has every been able to tell me cause or prognosis. Pain management specialist finally got me on something called Nuerontin, actualy a siezure medication, but is effective in blocking pain messages. I experienced about a 60% reduction in pain and got a huge part of my life back. Maybe your physician can provide more info on Nuerontin. I know they had to prescribe the upper limit - 2,400 mg/day, to treat the pain effectively. Since then the pain has spread to every joint and in the last two months has been joined by that aching you get when your arms/legs fall asleep and a great deal of spasms in my extremities. I know I will be asking my Doc about AVN. Good luck to you and I'll let you know anything I find out. -kat

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Re: HIV related AVN (Avascular Necrosis) - Bone Death new
      #39225 - 09/02/02 08:05 PM

MARIJUANA, POT, GANGA WEED, whatever you call it, it works for reducing the pain. Different strains for different ailments. I too have avascular necrosis. I find not only does it help relieve my pain but it also lift spirits as well as stimulate the appetite. Asa Hutchison and the DEA are lying when they say medical marijuana has no benefits. I am just so sorry the U.S. federal government and large pharmaceutical companies are fighting this issue and denying the millions of people who use cannabis to sick people. It's all about money and power and nothing to do about health care. Good luck.

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