Hi All. I've had MS for 12 years (was diagnosed in 1999 at 15 and am now 27) however I am new to this post. I've been on Avonex, Copxaone, Tysabri, and Gilenya...all of which either worked then stopped or just never worked. Being on Gilenya didn't work for me...I had about 3 flairs between March and June while I was on it plus activity on MRI's. I went to a different neuro who suggested Rituximab so I'm tryin to find some info on it. Any info or personal experiences with the drug would be appreciated. Thanks!
Welcome to our forum. However, I'm sorry that none of the disease modifying drugs have really worked for you so far and you keep getting flairs so close together.
When I first went to an MS Center about a year ago, they didn't know for sure if I had MS or neuromyelitis optica (NMO). The neuro that I was seeing suggested that I think about taking Rituximab that would be able to treat both/either one.
From the research I did at that time, I came to the conclusion that I didn't want to take it. It is more like a chemo therapy and there are pretty big risks and benefits of taking it (as with any drug, I'd guess). It does have a very high rate of reducing lesions right away - I think it was about 75% reduction. However, there is also a risk of death during your 1st infusion and the risk of progressive multifocal leukoencephalopathy (PML) and other infections.
I think I'd seriously think about it, before considering taking it. I don't think I've talked to anyone, yet, that has taken it.
I really hope that you can find something that will work for you and will be safe.
Thanks for thee feedbacK. Im getting different opinions on the rituxan from different drs Which is frustrating. I'm still hoping to hear some personal experiences with it before I make my decision. How all is well with everyone!
I was in a study for Rituxan in 2005 and have taken the drug each year since. I have not had a recordable exacerbation since starting Rituxan. But then I just read an article that they are ceasing the production of this med for MS. Best thing to ever happen to me is Rituxan. I have had MS for 19 years and it has been nearly non-existent in the past 6 years!
It's not that they are ceasing production of Rituxan for MS, it is that the company realized that with the patent ending, and two newer versions of monoclonal anti-bodies in the pipe, they did not want to spend $ to continue Phase III trials and the rigors of getting FDA approval to label this as an MS treatment when generics of it will soon be available. This drug is already approved for 4 other diseases in the USA. Doctors can utilize Rituxan off-label for MS. Getting insurance to pick up un it is another story.
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