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Well after 7 infusions of this stuff, I thought I'd take the time to post my thoughts and obvservations concerning it. A quick history to give a starting point. Progressed from 1 on EDSS to 4.5 in a very short period of time prior to trying Tysabri. I was in the Tovaxin trial and opted out after 8 months in the extension, so to me, I was going untreated for roughly 2 years and progressed pretty fast. Was using a cane full time, even in the house, for about six months. Was losing hope, and you guys know what it's like to be progressing unabatedly; it sucks.
So there's my starting point. The infusions themselves have been very benign. I don't feel anything at all in terms of side effects that day. However, I seem to have a trend that starts about the 2nd or 3rd day out. I get a bit fatigued and brain foggy and it seems to last a week, or sometimes even a bit longer.
I felt nothing in terms of "active drug involvement", but I've obviously gotten some function back as I am now a 3 on the EDSS and don't use a can at all. I can't bring myself to throw it out, but I haven't used it for a good spell.
So here's my take and the usual disclaimer about it being MY take, even though it's obviously my opinion since I'm writing it. Do I think it's effective? Yes I do. In it's intent I absolutely do. I was progressing over a fairly long period of time without any recovery and that has stopped. The only big change is that I started on Tysabri, so I'm concluding that it is the reason.
Since it's not "active" in terms of instilling repair, I definitely think that any getting better is simply realized by it keeping the progression at bay. That's what's advertised and that's what I feel it does. Since I haven't been on any other approved meds save for Avonex, I can't say it's better than any of the others. I didn't progress much on Avonex either, but I was just starting my journey and I can't say whether the Avonex did that or if it was just the first five years of MS. But since the Tysabri seemed to stop the active downhill slide I was on, I'll say it WAS the Tysabri in that case. It hasn't got me back to where I can exercise and still just see MS as a nuisance (that's my goal) it either only works to a point, or I have stuff that my body just won't be able to fix even if there's a 'cure'.
I guess the only other conclusion I can draw is that I must be RR. That one has been tricky for me since I don't have "knock you down" relapses. And also since I seemed to just get worse slowly over about a year and a half. And presumably since it seemed to be what it was that stopped the slide, I can only draw that conclusion. I'm getting a full MRI workup on the 15th (head and both spines) and I'll see if I have any active lesions or not. I just switched neuros due to insurance and he wants fresh ones, but they'll also be a good baseline for my upcoming vein surgery.
After that is done, I plan to stay on Tysabri for a while. Then, knowing me, I'll expirement and go off of it for a while and see what happens. If progression starts to come back, I'll go on it again. I don't want to be on this stuff forever, but if it keeps the MS at bay, I won't hesitate to do so. I hate reading about the PML deaths and I also hate taking a drug with a mysterious mechanism of action. What else is it 'maybe' doing?
So I have to give Tysabri a ringing endorsement. I do feel it stops progression since it did in me. I am so hesitant to say that since after all the ups and downs are part of the natural disease course, but since it was inserted during a prolonged period of progression and it stopped, I have to give credit where it's due.
Having two weeks out of every month where I feel very optimistic is wonderful. I'd like to be that way all the time, but if two weeks of the blahs (NOTHING like the interferon flu) is the side effect, I'll take it. So no shot site reaction, no nasty side effect except the fear of PML, and my thoughts that it stopped my skid make me say that I would recommend it to anyone who is having troubles with the other drugs. To me, I don't know why the other drugs are even out there since this seems better, but since the risk of PML is present it will always carry the moniker "to be used when the CRABs fail".
I like it and am very grateful to be on it, but come on CCSVI!
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