Answer Summary
Members shared thoughtful personal experiences when discussing whether Tysabri is worth the risks, with many agreeing it can be highly... Read more
I have been on Tysabri for almost a year. I am negative for JCV. I have taken Rebif and Tecfidera previously. Tysabri has zero side effects for me. Since I have been taking it, there have been no changes in my MRI and no active lesions. I personally think it is worth the risk - but only if you are JCV negative. Good luck and God bless.
I totally understand we all go through that period. I was against going to a cane. However when I started to approach a stairs or escalator I had to slow down and approach very carefully. Other individuals around me did not like my slowness and would blitz around me. When I started using the quad cane I really got more respect from those individuals around me.
Hey, it is 2019 why isn't MS resolved? When I was diagnosed in 1974. I had the opinion that MS would have a cure within 10 years. 45 years later we are still waiting.
MS is not a contagious health issue so no cure, just a cash flow for the pharmaceutical companies. the medical community and the societies and foundations.
I really feel bad for young individuals, like yourself. You should not have to deal with something known as MS. However you must do everything for a better quality of life.
Kevin it would be good if you went to PT to evaluate you for a cane.....I went today and brought it up.
One thing that really helps me is a Rollator walker of I go outside any long distances. Mainly due to drop foot
IMO yes ..... but MS completely f-up my life before I started taking Tysabri .... and I was starting to look forward to death.
On Tysabri no new attacks or even bad flare ups .... just a couple of over heated number days. On it fir 6 months ... golden... off it for 6 months and almost couldn't walk.... on it for the last year ... golden again. I'm JCV negative. ?????Im almost looking forward to life on Tysabri .... sometimes I even think about a future ... so yeah?????
No miracle reversal of sythoms though.
Good luck.... I wish you well.
@A MyMSTeam Member your neuro should have already ordered a blood test to check if you are JVC positive. There was a patient in Europe with other medical issues on top of MS that was JVC positive that died from complications from taking Tsysbria. That seems like a big risk until you analyze what happened. For me, I would give that med a shot if I wasn't JVC positive and might if my neuro didn't feel taking that med was wise (remember I wouldn't get sued if I died but they probably would have) There is a risk with every MS drug we try as they all could work or fail miserably. Sadly, no MS doctor will ever say that and what they recommend is often a SWAG (scientific wild a$$ guess) but you will never get your best result if you don't try different meds for some time to see what works. I think it's worth the risk and I'm rooting for you!!