A letter to my doctor- Salvage therapies beyond Fuzeon

[Guest guest]

I wanted to share this letter I wrote to my doctor so that you guys know what I am exploring as options beyond Fuzeon. It is a personal letter and I am taking risks by sharing it, but it is time for patients with multi-drug resistance to gather forces and come together to advocate for more drugs and better study designs that do not exclude so many of us! We are still the group of patients that has nothing to lose and that can activate activism like it used to be!

Dear :

After two and a half months on the Fuzeon, Viread, Videx, Emtriva, Lexiva/Norvir combo,my viral load has gone down from 35,000 to 2000 and now up again to 5000. My CD4 are staying flat at 220. It does not seem that Fuzeon plus the best possible background combo (which I am mostly resistant to) will work in the long run for me.

I wanted to enter the Tibotec's TMC 114 protease inhibitor study but they have Hep A and B as exclusion (my Hep B is undetectable but that does not satisfy Tibotec). They are recruiting in Dallas, not here. My liver enzymes have come down now that I am off the Kaletra/Invirase combo (as I suspected) but cannot get into the Tipranavir OLSS program because of my T cells are over 50 and the BI's RESIST study is closed for accrual (I was rejected for RESIST because of liver enzymes a few months ago). It seems that companies studying salvage drugs are still allowed to discriminate against people with liver disease, eventhough many salavge patients have some sort of liver dysfunction. I guess everyone wants their drug to look good during pre-approval and they are not even interested in having sub-studies to treat salvage patients with high liver enzymes or Hep A/B/C. With a lot of activism, I plan to change that this year!

It seems that Tanox here in Houston may go into a Phase II with their TNX 115 IV drug ; do you know who will have it in Houston.? Also, do you know if anyone in Houston will have a site for Reverset, the nucleoside that looked great at CROI? I am excited about these two and the Schering D entry inhibitor (I wonder when they will expand their sites).

What do you think I should do besides just wait and see (I have never been that kind of patient)? After 21 years with HIV, I do not want to go below 200 and take all the prophylactics! Thanks for all you do for me!

VergelDirector, Program for Wellness Restoration (PoWeR)An all volunteer non profit 501 © 3 organization.www.powerusa.orgSend an email to lipodystrophy-subscribe to join our free listserver!Subscribe to our newsletter PoWeRHealthReview by emailing Editor@..."Those who dare to fail miserably, can achieve greatly" Kennedy