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Shingles SUCK
Apr 17, 2000

The facts - Discovered I was positive after a Shingles breakout a year ago. Started HIV treatment at 100K viral load, CD4 of 64. Responded quickly to Combivir-Crixivan treatment - undetectable VL, CD4=100 after 6 weeks. Demanded a switch to a life friendly treatment at 3 months. The food demands of the Crixivan were destroying my life. Switched to Viramune - Combivir. VL remained undetectable. CD4s only rebounded to 130. Latest CD4s = 120.

My problem.... The Shingles have not ever gone fully away. I have a constant twinge in my shoulder and if I don't watch it wind up with a full blown breakout and the Acyclovir treatment blows (5X daily, upsets tummy).

I'm able to control them with exercise, tanning (for some reason the UV is soothing), and stress control. This has lead to other complications - now that I'm totally buffed up (net gain of 25 lbs) and golden brown, I don't get a moments peace while 'stress releasing' with the boys at my favorite pub. Seriously, I'm twinge free for about 8 hours after a work out and about 4 hours after tanning but then the twinge returns.

In talks with my doctor, he is indicating it is something I will have to tolerate. He says that even if I boost my CD4 count with Remune or Interleukin chances are the CD4's responsible for controlling Herpes Zoster would not be restored. The simply are gone. I understand the book is still being written in this area, but would like to know your thoughts on the subject.

Also is there a treatment worth trying for permanent relieve? I read an ad in the paper looking for elderly people for a 'Shingle Vaccine' trial. I assume this is the Chicken Pox vaccine used slightly differently. Has this treatment been looked at for HIV patients? Or even if available is it too late since my Shingles have already activated? What about alternative treatments? Acupuncture?? Crushed bat wings?? Minced dolphin fin?? I'm an excellent pill popper and am willing to try any treatment that doesn't interfere with my skiing and mountain biking schedule.

Thanks for the excellent information. It is truly a service. I used information I got from this forum to talk my doctor into ending the weekly Zithromax bombs. I thank you and my insurance company thanks you.

Response from Dr. Feinberg

Unfortunately, many people experience "post-herpetic neuralgia", which means that it still hurts after the lesions have healed. That is because when the shingles virus travels down the sensory nerves to an area os skin where the outbreak occurs, it may damage those nerves in some way.

First of all, there are simpler ways of treating a shingles outbreak than high-dose acyclovir 5 times a day. Both famciclovir and valaciclovir can be used less frequently. Secondly, it may be that you are destined to recover no more than 100+ CD4 cells, but I would suggest you try a more potent regimen. There are a number of protease inhibitors, alone or in combination with a 2nd PI, that can be taken only twice a day with food. These include nelfinavir, ritonavir/saquinavir, ritonavir/indinavir (these last combination can be done as 200mg/800mg, which is just 4 pills twice a day with no food restrictions), and others. A PI-based regimen (with Combivir) may give you a bigger T cell boost than nevirapine (Viramune)plus Combivir.

Thirdly, if you're one of the folks who does have chronic discomfort from shingles, other treatments for chronic pain can be used, such as gabapentin, amitryptiline, etc. If your doctor isn't familiar with these forms of chronic pain control, ask to be referred to a pain center. Your life sounds much too active for you to rely on chronic narcotics to relieve the pain, and you can suntan your way into skin cancer.

Lastly, it is possible that your immune response to shingles may not ever become as strong as if you were HIV-, but this is usually less often the case than the fact that you haven't yet had an optimal T cell response to HIV meds.


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