POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: lincoln6echo on September 13, 2012, 10:07:06 pm
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Hi all
Thanks to all who responded to my other thread in this forum..but thought I would start a new one so the latest won't get lost in the other thread. I would appreciate any advice or what your experience has been about being in a clinical trial.
I saw my ID doc today who was just the greatest guy. Couldn't ask for better. After much discussion and education, we came to a decision around meds. He is totally in favour of starting now as am I. I asked to stay clear of Atripla due to being prone to anxiety. I don't qualify for complera right now as my VL is still very high (btw my VL came down to 5 mil, from over 6 mil ,and my CD4 went from 360 to 574 in one week). He prescribed a three pills once a day regimen with the option of moving to complera or the new quad pill (when it's available in 4 mo's according to him) once my VL is UD. (sorry, I can't remember the names of the meds, there was so much info flying around for my first visit).
But then he threw something else into the mix, the option of participating in a new clinical trial. 200 people from the US and canada, they are shy 20 people. They are looking for newly infected who have not started meds yet. The Doc assured me that his #1 priority was to get me UD as soon as possible and he would not allow the trial to compromise this.
The ultimate purpose of the trial is to see if this new drug is more effective than sustiva, the dosage they need to land on to be effective. The trial is also connected to ultimately finding a once a month injection option rather then pills.
It's based on taking two existing drugs and a yet to be named drug OR three already existing drugs, but one of them is sustiva. Before starting you find out which group you are in, it's all randomly decided by computer. It's for two years.
As noted above, I opted out of atripla initially in talking to the Dr. because of sustiva and my being prone to anxiety. But if I end up in the group taking sustiva in this trial, i'm back where I started.
I have the option to say no at any time including if I decide to go for it and then find out i'm in the sustiva group. Then again, i'm just postulating that sustiva will in fact make me more nuts than I already am...who knows.
The meds are free of charge (but they would be anyway where I live, and i'm so very sorry to those of you who have to navigate getting access to meds..i can't imagine how stressful that is) so that's not a consideration. But it does require once a month visits, more blood work etc. I will take untill tuesday to figure out the impact on my life this would have when I meet with the ID doc again. (I also had a chest xray as i've had sketchy cough for the last month that won't go away).
I appreciate I should't ask, "what would you do" as it's a very personal decision, but perhaps you guys could let me know what your experience has been if you have been or are in a clinical trial, and anything else you might be able to think of I should be asking.
Thanks.
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hey hey Lincoln,
How's it going?
I was asked to partcipate in a clinical trial as well due to the fact my numbers were so well and newly diagnosed.
The decision is totally up to you. I opted against it because in my case I didn't want the computer to tell me no meds.
You have my support which ever way you choose.
let us know what you decide!
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I participate in a lot of studies -- have had my blood taken by apheresis, have given a lot of blood another time for samples, got screened for a gene therapy trial, etc. I do it because it's good to advance the research and, like you, they seem interested in me b/c I started meds early. Also I think the gene therapy thing has a decent chance of being "it".
Having said that -- I wouldn't start a trial as my first thing out of the box. I'd get myself UD as soon as possible, on meds that have the highest probability of working. There will be many other opportunities to participate in research-advancing studies.
Just my 2 cents. Good luck with your decision.
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I wouldn't participate in this trial unless you are absolutely comfortable being assigned into either group. A computer is going to decide if you take Sustiva or whatever they are testing against. If your already set against taking Sustiva, don't set yourself up to take just to be in a trial.
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Thanks for your comments and advice.
I actually googled the drug name and here is the clinical trial I am talking about.
http://clinicaltrials.gov/ct2/show/NCT01641809
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My prayers are with you no matter what decision you make.
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Just an update..I decided to participate in the trial.
I can back out at any time if things get to be too much..but if I don't ever try, I'll never know.
The ID Doc reassured me that the #1 priority was to get to an UD level, trial or no trial. Actually, since you get additional tests done, it's kinda like having "extra care" I guess which isn't a bad thing. I do have to go to the clinic once a month for 16 weeks, take more blood than usual, do a phone in thing to answer a few questions...but I think I can manage it.
There is a 1 in 4 chance I will be on sustiva but then again, if it messes with my head, i'll just go off the trial and move to another med.
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Hello Lincoln,
How are you? My hats off to you for doing the trial.
Please keep us posted as to your progress.
I hope all is well.
SBdude :D
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Just an update..I decided to participate in the trial.
I can back out at any time if things get to be too much..but if I don't ever try, I'll never know.
The ID Doc reassured me that the #1 priority was to get to an UD level, trial or no trial. Actually, since you get additional tests done, it's kinda like having "extra care" I guess which isn't a bad thing. I do have to go to the clinic once a month for 16 weeks, take more blood than usual, do a phone in thing to answer a few questions...but I think I can manage it.
There is a 1 in 4 chance I will be on sustiva but then again, if it messes with my head, i'll just go off the trial and move to another med.
I don't think you really understand the objectives of clinical trials. They want folks who will stay in the trial for the duration, as that is how they get results. You are of no value to a study, if you have already decided to stop the study if you get the wrong medications. Let someone else do it, who will commit to the study. Clinical trials are very hard to construct and get funded and the last thing they need are subjects who will bail if they don't get their way.
Joe
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Hi Joe
Thanks for the advice and I agree.
I might not have articulated it well enough but what I was trying get at was, if I have a bad reaction to sustiva in particular over a period of time, then I will go off of it.
It's really no different from anyone else who has adverse side effects who work with their doctor to find an alternate treatment.
Other than that, my objective is to yes, stay with it for the duration.