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Clinical Trial

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12 years 10 months ago #31785 by tamar
Clinical Trial was created by tamar
Just came across this. It is a clinical trial for a drug similar to Rituxan, but it is given subcutaneously (a shot instead of an infusion). It's not being conducted in my neck of the woods (MN), but the trial is recruiting in several locations.

Be aware that clinical trials have dangers as well as possible benefits; the biggest downside being a lack of long term side effects of using the tested substance.

clinicaltrials.gov/show/NCT00547066

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 10 months ago #31786 by dru
Replied by dru on topic Clinical Trial
I had been interested in this since the last time my itp relapsed in 2011. Then there was a site in DC where my daughter lives. but that site has withdrawn. I'm in ma and there is no site nearby. The thing that is interesting is that they are trying to develop a protocol/dosage specific for itp. Like rituxan, veltuzamab was developed for lymphoma. But the pharma company running this trial bought the non cancer usage rights.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 10 months ago #31789 by Sandi
Replied by Sandi on topic Clinical Trial
Someone else was just asking me about this. I haven't heard anything about it for a long time. Thanks for finding it!

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12 years 10 months ago #31829 by jeffrey71
Replied by jeffrey71 on topic Clinical Trial
I may call them up on this one. The Indiana site is only about an hour from me. what do you all think on this one?

Jeffrey

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 10 months ago #31833 by Sandi
Replied by Sandi on topic Clinical Trial
I think that anyone who jumps into a clinical trial is brave. Not sure if I could do it, but then I tend to have bad side effects to everything. It definitely benefits the greater good in the long run, so you're not just trying to help yourself, you're helping many, many people.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 10 months ago #31843 by dru
Replied by dru on topic Clinical Trial
I think it looks really promising. It has been going on for several years so they must not have had people with many adverse side effects. The veltuzumab is similar in action to rituxan but is given in lower dose. I would have tried to enroll in it at my last relapse in 2011 but there were no sites close enough.

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12 years 9 months ago #32221 by Winnifred
Replied by Winnifred on topic Clinical Trial
I did a double blinded clinical drug trial for Rituximab (Rituxan). I even made my self a t-shirt that says offical lab rat all the doctors and nurses signed it. This consisted of 1/2 the group getting Rituximab and the other half getting a placebo.

Doing a drug study isn't for everyone there are risk. That said I have never regretted doing the study it gave me remission.

It can't do any harm to look into the study. I recommend researching the drug especially if it was used for another illness. Least that way you can read about side effects long term effect and so on. I knew I receive the real drug before my doctors because I had a reaction on the first infusion and none on the other 3. I was tested for every disease out there that could give low platelets than each week I went they took more.

The cool part was when they drew my blood it was placed in a bag and I had to carry it to the lab. Physically hand it to a technician could not just leave it in their drop box. My name was never on anything I was a number. The nurses did not know what they were giving me my treatment came up in an IV bag that had no label except a number on it my number.

They did follow up blood work later than when my study was finished. That is when they revealed who received the drug and who didn't.

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12 years 6 months ago #35170 by tamar
Replied by tamar on topic Clinical Trial
veltuzumab is back in the news! Looks promising.

www.ncbi.nlm.nih.gov/pubmed/18512772

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