Yet more of my "Parade of MS Treatments"...
Tysabri: I did four doses of this controversial medicine in the fall of 2006. Tysabri was originally introduced in 2004, but was quickly pulled from the market when the little fact was revealed that several patients had died during its drug approval trials, from a brain infection called PML. Tysabri works by profoundly inhibiting immune system activity in the central nervous system, which is helpful to MS patients, but this also opens some patients up to infection.
The MS community was rocked by the demise of Tysabri, as its original trial results showed it to be immensely more effective in treating the disease than existing therapies. After further testing, the drug was reintroduced in September 2006, with stringent safety programs put in place, as mandated by the FDA. As with almost all MS treatments, Tysabri is only approved for RRMS patients, but Dr. Big Brain and I decided to give it a go since my condition was clearly worsening again after the temporary benefit I'd seen from intravenous steroids (see part two). It was kind of a scary decision, given the brain infection thing, but I decided early on that if this disease was going to take me down, it was going to take me down swinging.
After four doses of Tysabri, my condition continued to worsen, so we decided that I would come off of the drug. No sense risking potentially deadly brain infections when I was seeing no benefits. Tysabri remains in use today, primarily for RRMS patients, and has proven to be extremely beneficial to many who take it.
Plasmapheresis: Now, this one was more fun than a barrel of demented, sadistic, bloodsucking monkeys. Since Multiple Sclerosis is thought to be the result of a misguided immune system, in theory, at least, stripping some of the components of the immune system from a patient's blood should result in some relief from the disease. The one thing you quickly learn when dealing with Multiple Sclerosis, though, is that "theory", and "reality" are often two entirely different things.
When I underwent plasmapheresis, blood was continuously drawn out of my left arm via an intravenous tube, fed through a machine that looked like it came straight out of a 1950s science-fiction movie, and then returned back into my body through a tube attached to my right arm. The science fiction machine stripped the blood of plasma, which contains antibodies and other immune system components, and replaced it with sterilized plasma from a blood bank.
It sounds neat and simple, but undergoing plasmapheresis was actually kind of horrific. Because a large volume of blood is needed to move through the science fiction machine, the needles stuck into my arms were the size of garden hoses, and, naturally, the nurses had trouble getting them in. This led to my having several fainting spells, and I had to go through this procedure five times in a two-week period. During one of the treatment sessions, a tube came loose, and blood, my blood, started squirting all over the room. I remember sitting there and watching the hijinks, thinking, "this would be really really funny if it wasn't MY BLOOD! MY BLOOD SQUIRTING ALL OVER THE FREAKING ROOM!” The nurses did a nice job of surreptitiously wiping the splattered blood off of the walls, as if seeing them wipe the blood off the walls would be any more upsetting to me than watching the blood get onto the walls...
After each treatment, I was hit with a fatigue more intense than any I've ever experienced before or since. It felt like it was either sleep or die.
When all was said and done, plasmapheresis did absolutely zilch for me, other than give me the unique opportunity to feel like a victim of Count Dracula. Of all the treatments I've been through, plasmapheresis was definitely the worst.
In To Be Continued...
Yeah, you make it sound funny, but I've had poke and hope blood IVs and stuff where you think the person a total idiot and want to scream for the person who's really good at finding a vein. (Plus they got me Oreos from the secret stash as my after blood taking energy snack.) Funny, but Marc, you went through it, now I don't have to on the thin odds it might work for me. Reading it is like a good horror book, I cringed but it wasn't real. Thanks for having taken hits and telling "the team" about it.ReplyDelete
They should have left the blood on the walls and named the room the "Jackson Pollock Memorial Infusion Center". Could have doubled the facility charges.ReplyDelete
OMG!! This edition to your blog was both horrific, gory, and totally funny!ReplyDelete
I have to second the above comment. Never ceases to amaze me how descriptive and yet FUNNY you can be. It is a great thing that you do by using humor to explain a very humbling diseaseReplyDelete
Looking forward to more. Always great reading.ReplyDelete
An idea for later---> How MS changes the relationship between man and wife, from a male perspective. My wife sure as hell does not understand it.