just had my first infusion today.
i am still classified as RRMS and am probably doing quite well compared to many people who use these boards. however, after 8 years of mostly remission since my initial diagnosis, the last 6 months have been one thing after another -- numb, fumbling fingers; optic neuritis; and most recently weakness in my knees and fatigue after walking moderate distances. none of these have remitted so far-- the optic damage, which remits in something like 90% of patients, has been with me since before the new year. my neuro has not suggested that i've progressed to SPMS, and i haven't asked her. i figure there's no reason to make 5 or 6 drugs that are possibly helpful suddenly off-label for me.
however, i've been eager to graduate from ABCR's (i've taken betaseron, copaxone, and avonex) to monoclonal antibodies to try to fight back harder. i went to tysabri in february but unfortunately i developed antibodies. this is probably due to the fact that i had a single dose of tysabri in 2007 before it was pulled from the market when the first-ever PML deaths occurred. it's too bad. if you were a member of that tysabri "class of '07" make sure you get tested for antibodies before going on tysabri again. like me, you could end up wasting several months without effective treatment.
my neuro then suggested either Gilenya or the OPERA trial for ocrelizumab. after much research (i even went to the usc medical library to research the bizarre death in the phase II ocrelizumab trial) i opted for ocrelizumab. however, in the long work-up process, i "relapsed" again-- my leg problems started. this disqualified me for OPERA. next i went to gilenya. i chronicled that experience in a recent post
on this forum. my doctor decided that, due to certain heart problems, it was unsafe for me to take gilenya. i am 29, physically active, and have never had symptomatic heart issues.
around the time i was disqualified from OPERA i complained to my neuro that ocrelizumab was just a baldfaced attempt by pharma companies to replace a potentially effective medicine with an expiring patent with a new, probably more dangerous medicine the patent for which would last longer. i was referencing these two
articles. i asked my neuro to just prescribe me rituximab, which you can see from those links showed great effectiveness for disease progression markers in RRMS patients in phase II of an FDA trial which will now, for $ reasons, never go to phase III.
at the time, because gilenya was still on the table, my neuro refused. but i think she felt bad about me having a rough night in the hospital on my first and only dose of gilenya, and perhaps the fear of having someone die on her watch made her want to offer me an enticing alternative to drop gilenya. so with amazing speed i was scheduled for a rituximab infusion within four days of being discharged from the hospital. (of course it helped that i'd done workups for ocrelizumab for OPERA, and that i was JC virus negative as of my tysabri workups in february. all my ducks were lined up in a row)
so i got my first infusion today. compared to all the drugs i've taken in the past, the side effects element seems awesome. yes i had to sit in a chair for seven hours, but doing it just once every six months sounds wonderful. i was given benadryl by infusion, almost definitely more than i needed, and that was the only part that caused me discomfort (restless arm.) i was also woozy and lightheaded for a few hours due to the benadryl. as that wore off, i felt fine. five hours since the end of the infusion, i don't feel any side effects.
i'll add subsequent posts if anything develops. so far just feeling hopeful after 4+ months in the wilderness without an effective therapy.