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You Say

Several of our members have participated or are currently participating in a trial. Here is what they have to say:

"I am currently participating in a study on a drug by Knoll Pharma called D2E7. So far I am seeing wonderful results and am very pleased that I took the chance and went for it.

It is a little scary participating in a study where you know nothing about what may happen but as I have said, I had gotten to the point where nothing was working anymore and I told myself that if I was to get just one good day I would be happy. I am very fortunate that the initial stage of the study was for a 6 month double blind and I did very well and so am sure that I was receiving some form of the drug. In 2 weeks I will be starting the next phase where everyone will be receiving the same dosage and this phase of the study will last for 2 years. My hope is that at the end of this time, everyone will have done well and that the drug will be marketed. BETTER YET - wouldn't it be wonderful if it was also affordable for EVERYONE?" -Carolanne

"Using I.V.Gamma Globuline for jra. I had no problems with the study itself however, I gained no benefit arthritis-wise. It did do wonders for my infection rate and so am still on it but only on an infection fighting dose. I am currently part of a quality of life study before and following cortio-steriod injections. It was easy to participate in because you only fill out questionnaires. The results are yet to be determined.

I think that you have to be very careful about drug trials and clinical studies. Talk to more than one doctor and especially not only to the person conducting the trial. Something in my past, taught me that doctors sometimes have selective memory and sometimes give you only the information that they feel will push you in the direction they want you to take. Ask a lot of questions because I found out that the negatives are not always revealed until you start asking more indepth questions or you bring up something you found out on your own. Just as a side note: Thanks to all of you present and past, who have had the courage to try out the drugs we now use. You are truly brave souls." -Mouskie

"I was in the study for Colloral. I had good results, come to find out I was on placebo.

I figure if I can find something that can help me or someone else get through this hell, then it's worth the chance I'm taking, I always have my RD's approval prior to enrolling in the study programs or trying to enroll." -Tery

I think we owe those folks a great big thank you! Without brave people like you, we would not have all the treatment choices that we have. I am sure I speak for the entire community, "THANK YOU!"

Community Members
Page last updated on March 13, 2001