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.
i did take some steroids with the rituxan and in subsequent days, which have helped.
again, no side effects at all. the benadryl was again the only annoyance. this drug seems incredibly tolerable compared to the RRMS alternatives.
good luck to you!!! keep us posted.
Today, I saw results from a new MRI showing no new lesions. Plenty of old ones, though. No enhancing lesions either.
Based on this and the lack of new symptoms, the doctor concludes that Rituximab is working. Apparently the first three months after first treatment are less relevant than the second three months when determining efficacy. So we will stick with Rituximab for another six months.
The doctor advises that my case of MS is focused on the spine, and that spinal lesions tend to "stick"-- symptoms tend not to go away once the damage is complete. She uses the metaphor of a forest fire to explain how damage occurs and then symptoms slowly change before reaching a stasis. Trees fall over one by one. No mention of new growth, however. She advises that I should expect my current symptoms to stay with me indefinitely.
No miracle cure, but there is some reason to think that Rituximab is working for me. I'm not convinced; it could be a case of doctors seeing what they want to see. Most confusing to me is that this MRI showed no new lesions compared to my MRI of 12/30/11. Yet most of my current symptoms developed after that MRI. Why new symptoms without new lesions? (This question occasioned the forest fire metaphor.) More importantly to readers of this thread, why give Rituximab credit when I've had no new lesions since January but I only started Rituximab in May? I was effectively not on treatment for the first 4.5 months of this year, lost in pharma bureaucracies trying to sign up for drugs that eventually proved to be bad fits for me-- Tysabri because I had antibodies, Gilenya because I have low heart rate (see above.)
The data isn't convincing, but I see no reason not to follow doctor's orders and continue on Rituximab. I certainly haven't suffered noticeable side effects. At the same time, I'll continue with LDN and keep my eye on infection hypotheses, both those advocating heavy courses of antibiotics and those advocating reinfection with parasites/intestinal bacteria. If I break through Rituximab, I won't have many FDA-approved options left (the neuro mentioned Cytoxan) and that might be my next direction.
still following your posts. we were hoping for some decisive good results for you with some symptom improvement....isn't that what we always hope for no matter what therapy one is trying at the time. it still could be in the cards for you so hang in there. when rituxan was in clinical trial i believe there was some symptom improvement in about 30% of the trial participants...no worse that the statistical benefit one might expect from from all of the fda approved dmd's...30% reduction in rate of relapse in 30% of the patients...not terribly impressive in my book. my wife had a glich with genentech but sounds like things are back on track for her 1st infusion early next month. i think we are prepared to give it a 2 infusion test drive. hey, no new lesions is a good thing, rituxan related or not.
all my best
brad in sarasota
I'm diagnosed 4 years went through copaxone (no effect), Tysabri (developed antibodies my 3rd or 4th dose) and Avonex (made me sick and didn't help) I also have a neck injury (which I'm hoping to have operated on this winter) but your symptoms sound very close to mine. I found your report encouraging, how are things going now?
Also how long an infusion am I looking forward to? Magazine, Ipad, or Laptop?
best of luck to you.
Lets see how the next two weeks go. After hearing back from my doc i'm hoping to be pretty 'normal' and not end up dog sick or something.
Monoclonal antibodies are in the news so often – rituximab, ocrelizumab, Tysabri (natalizumab) for MS.
The golfer, Phil Mickelson, does an ad for Enbrel, which his doctor prescribes for his psoriatic arthritis; another recent ad is for adalimumab (Humira). Both ads urge patients to have a tuberculosis test done before treatment is begun.
Are people with MS getting a blood test for tuberculosis before they begin monoclonal antibody treatment?
- Similar Topics
- Last post