Where Do I Go From Here?

[cocogirl]

I have been on Avonex, 2yrs, Copaxone, anaphylactic reaction, BetaSeron, very allergic, and finally Tysabri for the last 2 yrs which has been great. I have been very ill these last 3 months and have been taken off Ty at least temporarily.

I spent one afternoon looking at 631 drug trials for MS meds that were listed by the FDA. I am too old most trials because I am 57 and most have 55 as the upper end. Some of the ones that I qualify for in age category, I cannot qualify for because of multiple allergies.

I guess what I need to know is is there anyone here who is on a trial and has multiple allergies and is older? Actually I would like to hear from others on their experiences with trials. Thanks!

[kittymom00]

Clincal Trial

Hi Cocogirl,
I have been in the Fingolimod Clinical Trial for almost 3 1/2 yrs now. I am now 54 - was able to squeak in age wise when I started! - and am doing quite well with it. I had bad reactions to Avonex, Copax and Rebif so my options were dwindling down. I feel extremely blessed to have the option available to me to go into this trial. I feel it has been a God send for me. No major flares since starting and no side effects!!! Going into a trial is a decision you have to make carefully. Of course you know that all drugs/treatments are not for all people. Will it be a good fit for you? I don't have any allergies, so I can't address that aspect for you but maybe someone else can. The clinical trial team at UW Hospital in Madison WI has been great also. They have made the whole experience all that I hoped it would be and more.

They take very good care of me! They watch me like a hawk, which I'm thankful for - any changes in "normal" day to day health patterns must be reported to them to relay info back to the drug co as it can potentially be a side effect of the drug. During the first 2 yrs of the trial, I don't know if I was on placebo or not, but last yr in March I started in the extended study and have been getting actual medicine since that time. So keep your eyes open and hopefully one day something is going to come y our way that will be the perfect fit for you! Best of Luck!

Kittymom