Considering Tysabri.

Have you heard about Tysabri (natalizumab)? Most MS patients have. It's an immunosuppressant back on the market since last year, produced by Biogen and Elan Pharmaceuticals. It was taken off the market for some time because three people developed PML (progressive multifocal leukoencephalopathy) - two cases were fatal. One of the fatal cases and the non-fatal one had been taking Avonex, Biogen's other MS drug for RRMS, at the same time. The other fatal case had a long history of using immunosuppressants.

I'm writing about Tysabri today because I'm considering taking it. Before I tell you why, I thought maybe I should write about my history with MS here. I've had it for over a year now, was diagnosed last November, and am currently taking Copaxone (glatiramer acetate), made by Teva Neuroscience, which I dearly love. Here's a short version of what I went through with my symptoms, diagnosis, and my choice to take Copaxone.

(Reposted from my tiny and never-used Copaxone community on LiveJournal, around April.)

I was diagnosed in early November after slowly degenerating since June. I wasn't able to see my neuro until October, because my former workplace misled me about getting my medical benefits, and I couldn't afford to see a doctor. I also had to move cross-country back to my mom's 'cause of financial trouble - in the worst of all this. I had gotten to the point where I couldn't walk unassisted, half of my left eye was blurry to see out of, I vomited up everything I ate because of a banding feeling around my stomach (so I'd dropped 1/6th of my body weight), I had trouble with holding my bowel and bladder, and below my neck it felt like I was wearing a thick bodystocking - no fine sensation at all, and even some pressure sensation was gone. I also had horrible pain along the sides of my spine and in my neck.

When I got back home, I'm lucky that my diagnosis was pretty quick and easy - well, I had five MRIs and a spinal tap within a couple of weeks, if you consider that quick and easy. There were two lesions in my brain and a whole score of them, still with swelling, in my cervical spine. Once I knew what I had, I spent a week in the hospital on methylprednisolone, which really jump-started my body back into behaving. Then there was a month on prednisone - a lifesaver for me before, during my second bout of Bell's palsy (my first one went untreated and is therefore permanent) - and while I took the steroids I decided on a long-term therapy.

I was all set on Rebif until I realized the only reason I wanted to take it was that the promotional material I'd read seemed like it was trying to scare me into taking it. I didn't want the flu-like side effects or the depression (no help needed there at that point) or the chance of becoming tolerant to interferons, but Rebif basically made it sound like if I didn't take it, I was definitely going to get sicker, all the while telling me how strong and brave I was. And when my fiancée Michie read it, she told me that was no reason to take a medicine for the rest of my life. I'm really thankful that she said that, because I was thinking it all along, but I'd already been so scared and confused by my diagnosis that I guess I needed someone close to me who knew me to tell me how they felt about it. She really saved me there.

So I went back to the other material I'd gotten - the Copaxone - and I reread it and realized how much better I liked the sound of it. Not just because this time there wasn't any doom and gloom disguised by images of people rock-climbing or anything, but because the statistical material impressed me more, and there was a comparatively smaller list of side-effects. When I called the Shared Solutions people for more information, they were really nice on the phone and I liked the general attitude about the drug. Of course, it took me another month to be able to start Copaxone, seeing as how I had to apply for Medicaid to be able to afford it. That's one thing that doesn't sit well with me about it, but I don't feel like talking about the problems with drug companies - even nice ones - in this post right now.

I started Copaxone in the beginning of December and I've been taking it ever since. I'm lucky that needles have never bothered me in any sense, and I don't mind giving myself injections every night - I've never missed an injection! I've had some site reactions and sometimes they're painful - like some muscle pain afterward if I happen to go too deep, or sometimes a raised area around the site - but they're nothing compared to the stuff I've read and heard from friends about the stuff interferons could possibly do to me. I know some people who are very happy on their interferon drugs, but I just didn't want to take that chance for myself.

I'm very new in my diagnosis and I have had some fallbacks since. At the end of December I was walking on my own again (with a cane), had regained most of the feeling in my body above my knees (my feet and calves going numb were the first signs I had MS, actually, and I know I might not get it back - I still haven't), my eyes had cleared up, and I was finally able to eat again! But by New Year's I was starting to go numb up the waist again, and my gait imbalance had gotten a little worse. So I went back on the methylprednisolone and then another round of prednisone. I got even better that time, and was really hopeful until the end of this month, when my pain got worse and the numbness came back again to my waist. So, last week was a hospital week for me and I'm currently on for another month of prednisone. I'm doing much much better this week than last one - I really love my steroids, I guess. I know it's bad to be on them for a prolonged period of time, but lucky I keep having longer breaks in between needing them.

I'm worried about people saying Copaxone isn't working for me because I seem to be having more exacerbations than I guess I "should" with the drug. I'm going to the Trotter Center at Washington University in St. Louis this month (on my birthday - oh joy!) and I'm afraid doctors there will give me news I don't want to hear, since I'm happy being on the Copaxone and think it's really helping me. Maybe I'm just going to have more exacerbations than other people. I've only been diagnosed for six months now. In the meantime, I have had more MRIs and no new lesions have developed since October, and every time I fall back, I end up coming back stronger than before.


... Except, this time, I'm not. I had another round of methylprednisolone in August, and have been on a month-long prednisone taper since. At first, again, it seemed like things were getting better. My main complaints with that exacerbation were pain in my back (a sure sign for me), loss of sensation up to my waist, and coordination problems. The oral prednisone taper after the infusions really seems to kick in and help the trouble, and it did... for awhile.

In the last week, I've been feeling worse than ever. My body is numb up past my waist again, so far up that I'm having dysesthesia again, which I haven't had for months. It feels like I'm wearing a body shaper and it worried me, because I hadn't had it in so long I forgot what it was, and then it came back to me like, "Oh, I'm not being crushed. It's 'cause I can't feel." That was truly terrifying. Add in several half-falls, spasticity that wakes me up in the night, burning skin, and that's my typical day for you lately. The increases in my medications (Neurontin, baclofen) haven't helped a bit, and I've been living for my typical 5-6 Lorcet Plus a day to try to mitigate the pain.

I saw that aforementioned MS specialist in April of this year and my fears were thankfully unfounded. The concurred with my first neuro's diagnosis of relapsing-remitting MS and suggested that, were I to have many more exacerbations, that I should go off the Copaxone for a month, try Tysabri for a set of months, go off the Tysabri for a month, and resume my Copaxone since it seemed to be helping with lesions in the brain and spine. Also, the doctor seemed to hold the same feelings about interferons that I did and actually recommended I not take them; that Tysabri would be a better route. If a doctor suggests Tysabri over interferons, she means business.

When I got back, my regular neurologist seemed to agree with her findings. That was five months ago, and things were better then. So, I'm considering it. And I'm kinda scared.

I don't think I'm a candidate for PML, but then again, I couldn't say I wasn't either. It's kinda scary, wanting to take a drug that's killed three people and was yanked off the market for a year because of it. Normally, I look at things like that pretty realistically (and harshly), but it's different when you're making a choice about it for yourself.

I have no idea where I'm going here right now, except that I'm feeling crummy, kinda scared, and wanted to let everyone know a little bit about my MS before I head on back to fat acceptance and whatever else. If anyone's reading, I'd love to hear your thoughts. Thanks.