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Need some advice

By: StillaRose
Mood: Fearful
Date: Jan 21, 2013
Music: None


So, today I went to a new ID specialist (2nd visit). From what I hear he is the best in my area. I can appreciate a Dr that tells you with certainty the plan of action needed for my health to be in tip top shape. However, thats how I felt a couple of weeks ago. I was all mentally prepared to go in and hear my blood work results and get a prescription for my regimen, which was to be Complera. Since this is the first time I am starting meds- from what I am told,that made mea canidate for the one a day pill. Well to my surprise today, it was something totally different. I was asked "Would I like to be part of a study?' Soley for the fact I am HIV poz and never took a regimen before- This makes me a great canidate (from what I am told). Going back to my first visit, I was offered 3 med options: Atripla, Complera, and Stribil which are all one a day pills. My Dr told me Atripla was not a good idea for me to start with, and that he was leaning more towards Complera. (again I was all prepared to start Compera today) However, now I am thrown for a loop and don't know what to do. The study is for Stribil TDF and Stribil TAF. The TDF form is currently on the market, but TAF is suppose to be easier on the kidneys/bones vs the TDF form. What do I do about this?

I dont want to be selfish and say No, because someone along the line had to do a study in order for current meds on the market now. Im also not sure if I want to say Yes, Because they are looking for complications/side effects of this drug and I'd be the test dummy. Please help with some suggestions or experience.... thanks.



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VIEWING 1 - 3 OUT OF 3 COMMENTS

January 23, 2013, 12:24 am
Thanks MJ,Teck, and Scott!! I have made a decision after speaking with my case mgr who also recommended this Dr. To go ahead and do the study. This is not a forced decision, I actually put a lot of thought into it. I would only benefit from it and like u say feel like I helped out in a small way towards the future.... Thank you for replying to my blog all of you have added to my reassurance that I am doing the right thing!!! Stay blessed!!

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January 22, 2013, 8:44 am

 We are all "test dummy's  Unfortunately .. But there are some fantastic new meds out there ... And need to be researched and data collected .. Someone has to undertake these drugs to benefit the future ... We  have all been part of trials at some time or other and once on a trial VERY special care is taken to follow your progress... But do not let yourself be bullied into anything .. If it does not feel right for you than you can choose to decline without feeling guilty as one way or another data research can be gained ..All Drugs have complications and side effects some more mild than others But we all react differently ...Once started meds must not be missed.. and do become priority of the day ..You will be advised on the best way to take them ""some with food" some without" Good luck on your decision  and it MUST be your decision 



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'COMPLY OR DIE'
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January 21, 2013, 9:43 pm

I have been a part of two studies for going on ten years. One which is fairly easy is a an eye study for people with hiv where they study the effects HIV has on your vision. It is basically and extreme eye exam once a year and not to bad at all. The other is nuerological study which is far more complicated and has been even invasive at times. For the upside of this has been that one, I feel good about helping out for my part in the study HIV and its affects. Also, I get to see the top HIV Dr's on the west coast. The few diffferent meds I have tried one didnt really help but another was excellent for me at the time. I found that the Dr's in research trials ( at least the two I am in) are very compassionate about your total health care and I have had them speak with my regular Dr on several occasions about  treatment options along the way which has been very helpful. Even for things outside the area of the actual study itself. So I thought that was an excellent benefit of being in a study. They tend to monitor you very closely so any side effects are noted and even possibly treated. All in all I would say I being part of the studies has been satisfying personally and medically for my overall treatment plan. Hope this helps a bit in making your plans...Best wishes for you..Scott



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