Today is the day that I am due for my Tysabri infusion. I didn’t make the appointment at my last visit because I thought I would wait until I had made the decision on whether or not to continue taking it. I have not come any closer to making that decision.
At my last nuero visit I was told that my most recent MRI showed that I had developed a new lesion in my right frontal lobe. That it wasn’t active at the time of the scan, but that it was there and that it was not there in the previous scan 6 months prior. My neurologist said why take the high risks of Tysabri if it isn’t working. That perhaps I should stop and try something new.
I really thought that Tysabri WAS working! I definitely feel a difference in my MS symptoms when I am freshly infused, compared to days like today when I am 4 weeks out. My fatigue isn’t quite as debilitating, in the warm months the heat doesn’t bother me as quickly. Even the numbness in my hands is less of a prominent quality of my life. I wonder if I will start falling again, if those maddening leg spasms will return with such frequencies. I almost feel like I don’t care if I have a new lesion, as long as I feel a little better!
MS really sucks. That whole relapsing-remitting thing. I have had remittance of a lot of the symptoms of my MS, but a lot of them stick around too. I just get used to them, and with Tysabri it really seemed to make that a little easier to do.
My choices for treatment are actually not “choices”, there is only one treatment that my neurologist says I am able to try. And it isn’t even FDA approved for the treatment of MS yet. Rituxan, or rituximab, is used for the treatment of RA, Non-Hodgkins Lymphoma, some forms of leukemia, and a couple other things I have never heard of. When I googled Rituxan and MS I actually came across an article that mentions my doctor in it. I think that makes me feel a bit better about it, but also has me wondering a bit if maybe she is being reimbursed somehow by the drug company to push it. I guess either way it doesn’t really matter. I wish I could talk to someone else who has used it for MS. And I need to find out if it doesn’t work can I go back to Tysabri and cross my fingers that I won’t get any new lesions?
One of things about these meds is that you can’t just go from one to the next. You have to wait 3 months in between each drug. I have had to do this twice before as I first used the interferon Rebif as my method of treatment, (made me so sick!) and then for a year and a half I did the daily injections of Copaxone until I switched to Tysabri after multiple significant relapses. The thing is with those drugs they didn’t make me feel better. Tysabri has changed how I live my daily life. I am really afraid of losing that for three months, never mind forever!
I have a follow up appointment with my neurologist this coming friday. Hopefully I will have a better idea of what I am going to do or at least what I should ask. I guess for now I will be kind to myself and watch out for the stairs and those damn bumps in the sidewalk.