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appreciate Ms Trial Lady posting this, and it sure would be nice to have a pill to take... get off the needle. dang I don't like shots! :grouphug: |
I have been on C for a couple of years now. Whether it is the C or just my disease course, my relapse rate has decreased from its 6 +/- week rate to only 2 in the past year and 1 questionable one.
I started C at the recommendation from my brother who spent 20+ years in the neurological research field. At the time, I don't remember his reasoning, he talked to me about all the findings, research, side effects, etc of all the DMDs. That is partially how I ended up on C. My neuro was his boss and they wanted me in a clinical trial. To be in the trial, I had to be on C. So I went for it. Cherie - Thanks for all the information you shared. |
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If someone were to use my case in the first 2 years on meds, Copaxone would be considered the nectar of the Gods. I'm more than happy to give it all the credit but I'd rather wait until the fat lady sings, 20 years from now, before feeling too victorious. I did have a dear friend say to me recently "yeah well in 20 years a lot of us could be in the crapper so don't think you are all that special". Dang, how is that for loving supportive friends? :D |
Thanks for the info Cherie!
I know from personal experience that both Rebif and Tysabri work quite well. I had improvements on each of them. But I feel a heck of a lot better on Tysabri! :) If it hadn't been for the terrible depression I had with the Rebif, I'd likely still be on it! |
I cant take the interferons so I am on Copaxone. I fried my liver with Betaseron, and boy was I angry!
July 10th is my MRI and they are going to tell me whether or not Copaxone is working for me. Last MRI had new lesions, and I have had some relapses since starting it. Copaxone does take a LONG time to start working. 6 months minimum, and 22 months maximum. I am 11 months into it now. I have my fingers crossed. |
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When beta 1B got approved (betaseron) it was like - why??? Results were basically in line with placebo affect. Then they approved beta 1a (huh?) - avonex and rebif. Then COPII (copaxone). The MS community (at least those on the internet at the time in 1993) were shocked. Nothing really worked. Ted Yednock's work with monoclonal antibodies seemed to be the only promising thing at the time but all these drugs were getting approved. We were all flabbergasted. Why? I did enter the Betaseron lottery in 1993 - drew such a high number that I had a 15 month wait. Results from the trials didn't improve so I elected not to take a DMD. Personal opinion - I've had MS for over 20 years and haven't taken a DMD. I still work/live/play a normal life. This disease is a crap shoot... Ain't no drug gonna help ya. Just bankrupt ya. Tom |
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