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blu4runner
08-30-2013, 06:39 AM
I wanted to say that attending the vasculitis symposium back in July opened my eyes to meeting the needs that my current medical team just really couldn't handle. I was at the rheumatology clinic at UVA for 18 months of treatment and just really didn't seem to see any progress. My Dr only had 4 of us with GPA and their treatment was prednisone and methotrexate first in pill form then in the form of injections. I did learn that we need the treatment of a Dr who specializes in the disorder if possible. I did sign up for the clinical trials offered and was selected to participate in a study which includes the 4 infusions of Rituximab and then the study part is half of the participants will get Imuran after the infusions and half will get future rituximab infusions to see which works best for remission. I have had 2 infusions of rituximab with 2 more to go and am seeing relief of some of my symptoms. It is a 4 year study and Dr Merkel from the University of PA hospital is my Dr for this study. I was in the middle of a flair when I saw him and have been totally impressed by him as a Dr and his team. I will continue to support the vasculitis foundation by donation but it was a wonderful experience and I plan on attending the next symposium as well. I was able to meet another board member while there but didn't know it until after the event was over.

pberggren1
08-30-2013, 06:42 AM
The symposiums have a wealth of knowledge for sure. I am glad you found us here.

drz
08-30-2013, 02:24 PM
I wanted to say that attending the vasculitis symposium back in July opened my eyes to meeting the needs that my current medical team just really couldn't handle. I was at the rheumatology clinic at UVA for 18 months of treatment and just really didn't seem to see any progress. My Dr only had 4 of us with GPA and their treatment was prednisone and methotrexate first in pill form then in the form of injections. I did learn that we need the treatment of a Dr who specializes in the disorder if possible. I did sign up for the clinical trials offered and was selected to participate in a study which includes the 4 infusions of Rituximab and then the study part is half of the participants will get Imuran after the infusions and half will get future rituximab infusions to see which works best for remission. I have had 2 infusions of rituximab with 2 more to go and am seeing relief of some of my symptoms. It is a 4 year study and Dr Merkel from the University of PA hospital is my Dr for this study. I was in the middle of a flair when I saw him and have been totally impressed by him as a Dr and his team. I will continue to support the vasculitis foundation by donation but it was a wonderful experience and I plan on attending the next symposium as well. I was able to meet another board member while there but didn't know it until after the event was over.

Merkel is highly recommended and my treating doctor consulted with him as well as Specks at Mayo. You are in very good hands. My blood samples at Mayo are sent to Philadelphia for Merkels team to evaluated for this study. Do they take 12- 16 tubes of blood from you too?

blu4runner
08-31-2013, 01:37 AM
Yes they draw quite a few vials before they start the infusion. We feel very lucky to have him as a Dr and resource now. Its about 200 miles for the visits but you can't put a price on your health and the option of getting proper treatment. When I first was contacted by Dr Merkel it was via email on a Saturday and he actually called me on a Saturday evening after 5:00 and spent 45 minutes on the phone with me and made arrangements to see me on Monday of that week. He really cares for his patients!

mdjazz01
09-02-2013, 06:19 AM
I have had 3 rituximab infusions so far. Each time I have felt much better for 2 days after each treatment . But then I go through 2-3 days of pure hell. Head & sinus pressure , head aches , cant sleep, face & teeth pain cough gets worse. Then for the next few days until my next treatment I return to my old crappy self with all the debilitating symptoms. When will the rituximab begin to work. This is no way to live.... can't work, or go out debilitated. I have 1 more treatment.

Dirty Don
09-02-2013, 06:23 AM
RTX, like most of the others, takes 5 or 6 weeks to really start doing its job. Tho some people on rtx claim nearly immediate relief.

rebekah
09-02-2013, 12:21 PM
It was a pleasure to meet you at the symposium, and I'm glad to hear things are going well for you with the infusions. So happy that you are seeing a wonderful doctor. I hope things continue to improve for you. :)