Tysabri as first treatment?

[marie0610]

My bf was dx 6/10/13. He just found out he is JCV- and I guess his Dr had talked about starting with Ty. From the research I've done it seems like most of the time this is reserved for people who haven't been responding to other treatments. I'm also very nervous about the PML risk. I was wondering, if you were just dx and it doesn't seem to be to aggressive (has a few lesioins on cerebellum and temporal lobe), would you take the risk and start on Tysabri?

[ru4cats]

See post in thread above. In one word YES !

[Myoak]

IMO, research has pretty well established that early and aggressive suppression of MS inflammation favorably modifies the longer-term disease course. Please discuss that factor with your doctor.

A quote from Timothy Vollmer at the Rocky Mountain MS Center, "If we wait until patients have fixed disability, we have waited too long. They have lost so much neural tissue that we can't restore function. What I think is critical for everyone to understand is this: it's not where patients are now that's important. It's where they may be when they are 55 or 65 years of age. What we are trying to do is protect their brains for their futures."

Every MS patient makes decisions involving risk and they are seldom easy decisions to make. To me it seems as though there is never a “perfect choice”. We assemble all the information we can, listen to counsel from MS specialists and then make the best guess we are capable of.

There are several treatments to choose from but something we often fail at is realizing there is risk not only in choosing a specific treatment but there is risk in not choosing it, also. It is an aspect which must be considered. In the end only you and your MS specialist can decide on treatment. Always tough choices with MS. Best wishes!

[imrachelk]

yesterday was my first dose of Tysabri and it was my first dose of any MS medication ... I am JC - too ... 34 years old ... my doctor was all about being aggressive.

[marie0610]

Thanks for all of the feedback everyone. I feel much better about this. It's just been a crazy and stressful week and a half figuring all of this out. I am so thankful for this site and even though I'm not the one with MS I want to be there for my bf through all of this so this site is so helpful in doing so.

[palmtree]

YES, YES, YES and YES. When I was first diagnosed I wasn't given that choice. 3 months later I had a severe flare that has left a lot of disability. If only I could have started sooner I could still have the life I did before the diagnosis.

I wrote the FDA and told them patients need to have a choice. And from the appearance of things they may have listened. Now people like you have the opportunity.

PML will always be there but if you are JC- and you have the insurance to cover it, I hope you will seize the chance to keep the monster from crossing the blood brain barrier and causing demyelination.

However, this is your life and your choice. Good Luck!

[marie0610]

Thanks for the responses. I feel so much better about this treatment now and have read so so so many positive responses for it. I think when we go to the Dr on Wed we decide on the treatment choice and if Ty is still in option I think it's the option he's going with. Fingers crossed.