Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

Tysabri for Secondary Progressive MS

mjideas
mjideas
Hi everyone. Next week I see an MS specialist for 2nd opinion. Should I try Tysabri at this stage yes or no. When it first came out I was told because I was in secondary progressive I did not qualify. Now 5 years later with additional damage to my brain and spinal cord it has been suggested as well as Gilenya. By my new MS specialist (right out of training).

The new approach at this clinic is now lets try these rrms drugs on more progressive MS. It is a 360 change.

I have a friend (same as me/slightly less disabled) who tried it for 1 year-no improvement.

I see a very experienced MS specialist next week for her thoughts.

Anyone in secondary progressive 5+ years who has tried this?

Just trying to get some feedback. I am JC negative.

Thanks!

Melanie
lchoppel
lchoppel
bump, anyone?
STEVP
STEVP
My take is that I will do whatever it takes to at least give me a shot at stopping the disease. I have previously mentioned my experience with Novantone, but apparently it is no longer an option due to the risks involved.

My neuro has told me that Tysabri is available for me if I want it. She is on the fence in that she feels my MS may have "burnt itself out" and that maybe we should take the wait and see approach. I like thaty I do not have to do the treatemnts, but I am apprehensive in that I do not have another 10% to lose should I be in remission rather that the diseaase being "burnt out".

Note: I do not know if Tysabri is available for Secondary Progressive, but it sounds like she may be classifiying me as RR for the drug's purpose.
deleted_user
deleted_user
I too have been suggested to try Tysabri...been on Copaxone for over 5 yrs now with improvement but because I am so thin I am running out of spots for shots. I am scared of Tysabri because it can cause bad encephalopathy...but that virus can now be tested for before getting on the drug. Be prepared for more MRI's, blood tests, lung studies & ?? more before using it. It does have good results from what I have been told, however the longer you are on it the more risky the side effects are. I have elected to continue Copazone just being careful how I give it. My MS is progressing but I do have a tendency to push the envelope physically :) hope it will work well for you!