Well, here it goes. I was diagnosed with RRMS in Aug. of ’03 (male, 37 y/o at the time). My symptoms pretty much ran the gamut…. horrible balance/ walking problems, having to run to the bathroom every 5 minutes, having trouble remembering where the bathroom was, stiff, sore muscles, trouble swallowing, pretty much the whole 9 yards. My neuro. gave me the CRABs tapes and told me to call him if I had any questions. I only had about a million of them. I could only bring myself to watch one of them (rebif) as I’ve had a huge phobia about needles pretty much my whole life.
I recalled the NP at my clinic telling me about a clinical trial that she was recruiting patients for, and that I was exactly what they were looking for…. recent diagnosis, at least 2 attacks, and no prior treatments used aside from steroids. What really stuck in my mind about it was that there were no self injections, just an IV dose once per year. I called her and went in for a visit, got some info, and a few days later signed on to the study (it’s a phase 2 study).
The dosing itself consisted of starting with a steroid drip for about 30 minutes. The steroids are to counteract the “temporary return of symptoms” (one of Campath’s side effects), followed by a 4 hour dose of Campath administered via IV infusion, and this was repeated for 5 days. The dosing itself wasn’t bad at all…. I just sat in the clinic’s dosing room and watched TV (though afternoon TV leaves a lot to be desired), then my wife would drive me home. The symptom’s coming back were scary to say the least (I felt like all of my previous steroid treatments and physical therapy work had been instantly erased). I also had a nasty rash that was sort of like the hives, was very tired all of the time, and seemed to have no strength or energy whatsoever. All things considered, the side effects were pretty mild and were gone within a week. Then I returned to work, and waited to see what would happen.
As time went on I noticed things getting better and better. Things that I’d thought were gone forever slowly started to come back. Bending over to pick things up quickly and easily, standing on tip toes and reaching overhead to get at a high shelf, being able to balance on one leg, being able to do a “high kick” (sort of like a punter) is one of my favorites. My wife was really happy the first time I did it, but after the 10,000th time it was rather clear it was wearing a bit thin with her, but I never get tired of doing it
This last summer I even rode a bike again (a bit wobbley, but passable), and I even braved going out on to a golf course again. And I didn’t look or feel like a golfer with MS…. I just looked like a lousy golfer who needed a lot of practice (sort of like I looked prior to MS). Then around July 4th my wife and I hiked the summit peak trail (5 miles) and hiked up Silver mountain, both in Michigan’s Upper Peninsula. On Labor Day we walked across the 5 mile long Mackinac Bridge that connects Michigan’s two peninsulas and hiked a short trail in the Straights state park. All together we covered between 8 and 9 miles in one day. And the best part is that I didn’t have to worry about keeping medicine refrigerated and injecting myself as a reminder that I have MS. Campath has allowed me to forget that I have MS, at least some of the time. I'm even working an average of 45 to 50 hours a week, with no ill effects other than a case of shingles brought on by stress and lack of sleep (NOT fun).
And last week I went in for my second dose at my one year anniversary (only 3 days this time). The side effects popped up again, but weren’t as bad as the first time. I’m off of work until next week so my immune system has time to recover because Campath does a number on it and I will be open to colds and the flu for a while.
The way that Campath works (from what I understand) is that it goes in and wipes out certain white blood cells/ lymphocytes that are crossing the blood/brain barrier and attacking my brain. My immune system is supposedly weakend by this. But I haven’t really noticed that I was catching more colds than anyone else. The thyroid problem that has been noted in the pilot study hasn’t popped up with anyone at my clinic (there are 10 people on the study I think). A couple of peoples’ thyroids got a bit overactive, but they righted themselves without any medication. Of all the people on the study, we’ve only had one person who’s had a relapse, and she was in the Rebif group. There are 3 groups in the study; one on high dose Campath, one on low dose Campath, and one on Rebif as a control group (I’m in the high dose Campath group).
They’ve even opened up a second study (much smaller than the first… only 45 people nationwide I believe) where people who have been on CRABs for up to three years, and the meds aren’t really working for them are being given Campath. And all of them are doing really well…. they’ve had one relapse in that group, but I guess that she was in pretty rough shape before she even started.
Anyhoo, I guess I’ve rambled on long enough…. sorry if I’ve bored you
Anyways, that’s my Campath experience, and needless to say I love it. Everything I’ve said here is in no way “official”, just sort of my observations, and I’m sure I’ve managed to get some things wrong and left others out. And feel free to ignore any spelling or grammar errors. I’m a techie, not a writer. Thanks for listening.
But I dont want both. I feel really guilty at not having your courage to try this therapy and if (when?!) it is shown to be a) safe and b) effective we'll all be very much in your debt. I really do wish you all the best and hope nothing goes wrong for you.