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Who's participating in HIV research? Share your story

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I go Fri. for my blood draw for Dr. Ueda's studies.  I think I'll have them draw for my regular tests at the same time so I won't need to have another the next week.  We'll see if anything more comes of it.

I just started meds two months ago. I have good health insurance benefits but decided to participate in a study because I've always been an advocate for research and the study I was in was looking at sustiva or reyataz combined with epzicom or truvada.  It was a double blinded study but after all my research all four possible combinations were considered first line and great.  Unfortunately, I suffered some intolerable rare side effects (extrement pain) and the fact that the study was double blinded actually slowed down my doctors response to my situation. I'm also not one to complain, so I may not have let them know how bad things really were.  I was removed from the meds and the study was unblinded.  A different med was substituted for the most likely culpret but I've still had significant pain.  When I went into the study I was under the impression that if there was a seroius side effect I could just be switched to another arm. That is not the case.  I can stay in the study and have some other drugs substituted, but I cannot be placed on a combination that would be equivalent to one of the other arms.  So that immediately removed two other potential combinations that might have been better for me.  It has caused me to lost some confidence in my doctor and made me question whether I'm getting totally unbiased treatment.  Only time will tell. I'm still in the study with Videx EC substituted for the abacavir that was considered the most likely culpret.  Hindsight is always great.  Knowing what I know now, I probably would have skipped the study and just started with Sustiva and Truvada.  But, one of the purposes of the study was to look at the tolerability of the combos.  And they should have some excellent data from my experience.  I'm also a bit disappointed that after going through all that I've been through my VL is still 414 and not undetectable after 8 weeks (only 5 on meds though, there was a 3 week break in there).

A few weeks ago I screened for the GS-9137 Integrase Inhibitor. I passed the screening, and have another screening appointment on Friday.

I have been in other studies- Crixivan, TMC 114, and T-20 (fuzeon). I believe in research, and feel it is a way to help others.

Thanks Christine, TedEBear, Minh, Eric, Jack and Basquo for writing about you're experiences !!

I believe  that through these individual efforts working in tandem with researchers that we have made the progress we have since the very bad old days of the 80's and early 90's. Without these stories of participation and sometimes sacrifice as to our health we would not have the medications we have today. Every story, every persons experiences are important, equally.

I'm looking forward to reading more stories as I know that amoung our AM Family there are many more HIV research tales to be told.

With Peace and Love


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