Tysabri for me

[disconcerting]

I don’t know about advice, but I can tell you my experience using Tysabri. I have been receiving an infusion—Tysabri—for at 13+ years. After my diagnosis only the ABC drugs—avonex, betaseron and copaxone—were available and I had intolerable symptoms. My doctor recommended Tysabri which was new at the time and it was recommended to be used only—not in combination with any other interferon or MS drug. Although, my MRIs showed much irreversible damage—imho—to my brain and no where else; Tysabri stopped or slowed extremely any progression of further damage. 

Today, I have found that as my next infusion date gets closer, my brain gets foggier and I have more fatigue and pain—all initial symptoms as years ago. I feel like my “gas tank” is close to empty and upon infusion, my “tank” is refilled but sometimes requires me to rest a day or two. Almost like my body is shocked back into life and all of the things I may have unknowingly damaged, i.e. run my foot into something and the toe I broke is starting to heal and now I feel it. 

The last thing I found significant, is I started Tysabri infusions 30 days apart for close to 10 years. In recent years, as the seasons become warmer, I fare better 25-28 days apart. I hope I answered your question. Let me know if you have any further questions.   

- disconcerting

[mrsmike9]

Have you told your doctor how you "run out of gas"? Perhaps they would have a suggestion.

[Jesuslover69]

I'm sorry to hear that you've had such bad reactions to the DMTs that you've tried. Personally, I started on Betaseron shortly after it was approved. I've been on it for 30 years. In the very beginning, I had Injection Site Reactions, bruises at the injection site. After a while that stopped. The best thing that I can say is that I have NOT HAD A RELAPSE IN 30 YEARS!! What has helped me the MOST is MY FAITH IN GOD!! I was not a believer when I was diagnosed. I was 20 years old and thought that I was too smart for religion, that people who believed that nonsense needed a crutch to carry them through life. My sister and Brother-In-Law had recently become Christians. They prayed with & for me. They led me to accept Christ as LORD & Savior. After that I was relapse free for 8 years. I remembered how scarey it was, especially the NOT KNOWING what was wrong for a long time. I prayed that something would be found to help diagnose the disease. Then, MRI technology cam into being, so M.S. could be diagnosed . I prayed for treatments to be developed to help the patients. AndBetaseron was developed. The Betaseron works for me, but not for everybody, so more DMTs were made to help those who Betaseron didn't work for. I've been walking with the LORD for 30 years and I find that I can be at peace, no matter what happens because THE LORD CARRIES ME THROUGH WHATEVER I'M GOING THROUGH!! Treatments are good to help patients, but, THE GREAT PHYSICIAN IS THE BEST,NO MATTER WHAT THE CONDITION!!

[DarMim]

I have been on Betaseron for 17 years. I had one relapse after the first year (2006) and none since. I still do not like giving myself a shot, which I do 3x a week but I do it as a way to keep myself stable. I absolutely have to take 2 ibuprofen after the shot or within an hour or so otherwise, I get terrible flu like symptoms. This is something that will never go away but as long as I take the ibuprofen I do not have any side effects. But that was after probably 6 months or so of being on the medicine and all of the time after. In the beginning it takes awhile for the body to get used to the medicine and there can be some side effects but definitely always without the ibuprofen. There is a copay assistance program and good support if needed by nurses 24 hours. Anyway, it is an option that has worked for me and I realize others cannot always tolerate it.

[Fancy59 CommunityAmbassador]

I loved Tysabrì. I was on it for several years. It's the only MS drug I was ever on where my MS improved dramatically. However, I was J C virus positive. Slowly but surely my viral count started in creep up. When Tecfidera hit the market I was encouraged to switch to it. It worked pretty good for the first year but into the second year my disability took off again. I went back to Tysabri and unfortunately in ĵust 6 short monthes, I started havìng complications and had to get off of it again.😩☹️😟