Tysabri Infusion #2: Down the Shoot 01/18/2011
 So infusion number two was an even easier experience than the first. I killed a couple of birds with one stone, got some reading done for school while I sat in the chair. I found out I did test positive for the JC antibody, but I’m not sweatin’ it. Here’s a list of awesome things I’ve noticed, or better yet haven’t noticed since going on Tysabri: Muscle spasms-Waaaaaay less frequent, I can’t emphasize this enough Weakness in my neck-Yeah, it sounds stupid. Sometimes though it would feel like my head was bobbing around like Annette Funicello on Entertainment Tonight circa 1995. This was unpleasant, but is has pleasantly decreased. Energy levels-Way higher. I’ve been joining Jackie in the fight against fat. I can now walk more than five minutes (try 45 minutes, bam!) on the treadmill without losing any sensation in my legs or feet.This hasn’t happened in ages! This is huge for me.  10 Comments Rockin' Tysabri 12/24/2010
 So I can officially say I’m back in the game. I had my first infusion of Tysabri four days ago, and I’m feeling pretty damn good. Is it the drug? I have no idea.I do know however that this week my muscle spasms are far less existent than they have been in months. Whatever the reason, I’m jazzed. Yep, jazzed. As we all know, disease modifying therapies cost more per year than most of us will ever spend on say, our college educations. However these drug companies do want us on their drugs (go figure) so what my insurance doesn’t pick up, Biogen Idec is paying the majority of. Ten bucks a month is all I pay, plus the cost of a visit to the infusion center. This works for me. The infusion is quick, just one hour plus an extra hour of chillin in the chair for monitoring purposes. Zero side effects so far. This is a far cry from the medicating to medicate, and then medicating some more routine I had with Avonex. Some of you can definitely relate to this, unless your one of those freaks who has zero side effects with interferons. Here comes the really boring part... The most recent stats from Biogen Idec show 79 people having developed PML, with 16 of those resulting in death. So 20% have dropped like flies, with a large gaping hole of information in regards to the other 80% living with PML. If you don’t already know what PML is, a very appropriate description I read called it a “brain eater.” Perhaps that says it all. If not, use google. So in laymen's terms, this is how Tysabri works. We all have T-cells which aim to ward off infection and bacteria in our systems. Those of us with MS have T-cells on crack, which see our myelin as an enemy and therefore attack. So T-cells are sort of a necessary evil. Tysabri binds to these T-cells, working to keep many of them from moving past our blood-brain barriers (BBB) where they do their damage. Even if some of these pesky little fuckers do move past the BBB, Tysabri can work to divert their path away from myelin. So here comes the part where the evil becomes the necessary. Most of us at some point in our lives have been exposed to something called the JC virus, which is what causes PML. Our T-cells are essential in providing protection from this virus moving past the BBB and into our brainz. In some of us, it’s possible that the JC virus might already be living in the upstairs apartment that is our brain, however lives dormant because our immune system has kept us protected. It could be that the immune system suppression that Tysabri creates allows the JC virus to start having very loud party, probably throwing t.v.’s out the window and such. If any of this sounds like bullshit, please feel free to correct me. I’m really only trained in the social sciences, with a working knowledge of google. Biogen is currently conducting a study (Stratify-2) of 8,000 Tysabri users in order to find out if they have antibodies to the JC virus, which essentially just tells you whether or not you’ve been exposed. The question this research asks is if one’s potential exposure can help predict a higher versus lower risk of developing PML. I’m not rocket scientist, but it seems like having these antibodies would um, increase your risk. Either way, I had my blood drawn before my first infusion, and should know within the month whether or not I have the antibody. Obviously because the majority of us do, the presence of it in my body isn’t going to determine my continued use of Tysabri. Anyway, one treatment down. Woot! Peace to you all! It’s almost 2011. WTF?! What up, Tysabri? 12/17/2010
 After four months of getting the run-around from my insurance company, I’ve finally been approved for coverage of Tysabri. My first infusion is Monday, just a few days away! Update to come soon... Shootin' Up The "C" 11/14/2010
 Ok So...no lies..I totally skipped like 3 days of Copaxone after I got back from Oregon. I missed my audience. lol But I've been back on the wagon for the last few days and I gotta tell you, zero symptoms is pretty sweet. I have noticed on my legs I've got some tender spots, and where I inject stays really warm for days, but whatev. I'll take it. I remember being on Betaseron and pretty much hating life. So far Copxone is not so bad. Ask me again in a few months. Update on life in general (sorry if you for some reason read my other blog....(not that I know why you would) but I talk about this there) Anyhoo...in light of my recent unemployment I have taken it as a sign that its time to go to Grad school. So I start classes in January...holy cow. I'm wicked nervous because I haven't been in school in 4 years, and you know I happen to have a surgery smack dab in the middle of the semester. You know me and my surgeries....they seem to be never ending. So I have no job, no money, and I decided to take on a 30k+ schooling endeavor and I'm kinda just...meh whatever about it. School in my opinion is not real money. I'll never touch it. I'll never see it. It just is. Its a lexus I don't drive and a possession that can never be taken away from me. So school + disease isn't that unfamiliar to me. I got diagnosed my senior year of undergrad...that was fun. But I still finished my projects, graduated on time, and my professors didn't know I was really hooked up to an IV at home. I can do this. I can do this.  Here’s an update on what’s happening in my world, in terms of MS drugs. I began Avonex very shortly after I was diagnosed, just about two years ago. I rocked it for awhile, about fifteen months, and seemed to do fine with the mild side effects. Eventually however, the IM shots became too much of a bitch for me to do. Luckily I had a friend who was recently certified in all things shots, and she was thrilled to come over once a week and stab me in the leg. That was awesome. However, after two mild bouts of ON, and a continuing progression of muscle spasms, I said “fuck it” and gave up on the drug. I honestly didn’t feel like it was offering me the protection from relapses. Do I regret it at this point in time? Yep, I do. I went into this whole deal knowing that there is obviously no guarantee that any of the CRAB drugs are going to help you stay out of relapse, however there is also the chance that having stayed on the Avonex up until this point would have kept some of the progression of symptoms even just a little more mild. It’s certainly all a crapshoot, but it’s the best we’ve got. Even though I would have eventually moved onto something other then interferons, I’ve now been drug free for about six months or so, and I regret that it might have been a stupid move on my part. An MRI a few months ago showed a nice new load of lesions. I did a round of IVSM which didn’t really seem to do much in terms of the new myoclonic spasms I was, and still am experiencing. At this point in the game my doctor has suggested that interferons aren’t my best bet, go figure. Tysabri is the word. Two years ago after reading about PML associated with Tysabri, I would have said you couldn’t pay me to ever go this route. Today however, I am singing a different tune. While the fact that most PML cases have occurred in Europe, have generally been after hitting the two year mark in treatment, and has been linked to a patients previous use of chemotherapy drugs, I’m a little less weary. It’s also been pretty comforting to hear from those of you, and to read about many who are taking on Tysabri with positive results. Two months later however, I’m still caught in the midst of insurance playing games, from denying it, to rejecting an appeal letter for various technicalities. Let’s just say they’re taking their time. There will always be the patient assistance route, which I’ll definitely take advantage of if I can. I can’t really do this however, until my insurance company takes it’s collective head out of it’s very large ass, and simply denies me altogether. So how about Copaxone? I’m not sure why this wasn’t discussed as an option the last time I met with my doctor. It isn’t an interferon, and it also doesn’t come with the risk of severe disability or death. Let’s be honest here, this is a major plus. During Jackie’s recent stay, and watching her do her injections, I honestly feel like this is an option I want to bring to the table during my visit with the doctor next week. So as I wait for Tysabri to become a reality, perhaps it will just fade away as a distant memory of what could have been, and I’ll just be Copaxone twinsies with Jackie. Hopefully I’ll know more next week after my appointment. I am definitely ready to rev up the disease modifying engine once again. Oregon with Dana and her weiner. 11/10/2010
 Super late Monday night I got back from my trip to Oregon, that native state of my pal Dana. Oregon is pretty rad...there are far less poor people than there is here in Detroit. Go Figure. There are a shit ton more trees and hills and mountains and things....Michigan is rather flat. It was awesome seeing Dana again. Its been a year since she came here last year, so I enjoyed invading her life for a week and doing all things "Oregonian". We went to the coast, which was cool because I've only been to the Atlantic. I've also never been west of Chicago, so it was all pretty new. We went to Portland for a few days and did things like Voodoo Donut and saw a Blazers game. Looking back on it now, I'm thankful that were both still mobile and traveling and farting around cities is still something we can do. I suppose we better do it now because we both get to be all old and cranky. We'll save wheelchair races for that time. Anyhoo....Dana has weiner dog named Penny. Shes super cute. She did totally make me miss my doggies though. Also, I shot up in front of Dana a few times. and it was totally fine. In fact having an audience made it easier because I couldn't screw up or wuss out. She started out on Avonex so my wimpy little Copaxone needle looked a little more her style....so we'll see if Copaxone will be a good alternative in the future. And by "we" I mean Dana and her Neuro. So with that I'll just leave you with some rad pictures from my travels. P.S. I never got stopped for carrying needles. TSA was pretty good about that...I did get stopped once for smuggling an Ostomy....and also alleged killer face wash. So...it guess its good they are doing their jobs? Dear Copaxone... 10/26/2010
 okso I just did day 2 of my Copaxone shots. Uhm.....suck. It kinda hurts. I mean not having flu like symtpoms, the chills, any of that crap was nice. After a few minutes I don't even know I took it. That is pretty awesome. BUT for about 10 minutes or less after wards....yikes..it kinda hurts. Not like worst pain of your life hurt, just like wow could that burn anymore. I think the hardest part is that you can't rub it. Like I just wanna rub it, as if to say "dont worry leg, it will all go away soon" but I can't. Instead its like an itch you can't scratch. Its that stinging sensation after something, or the tenderness after getting punched. It doesn't exactly hurt...its just there. You just can feel that spot of your body in a way you don't normally feel it. Well...so far so good. 2 days down. I'm doing much better this time, than when I was on Betaseron. I can do my shot and be done in about 5 minutes, as opposed to just staring at the needle for about an hour before I either did the shot or gave up. I'm in a far different place now with needles than I was before. I've now had 4 medicines that require injections...so I'm pretty much over it now. I also do a manual injection because I effing hate those stupid injector things. They use so much force and pressure..its no good. What about you? Have you switched meds? How's your fear of needles? Back in the game 09/21/2010
Ok so I'm not on my computer so I dont have a picture of my face, but its Jackie. Some of you may have seen on the FB page that I'm going to start Copaxone here shortly. I'm just waiting for all the paper work to go through. I have new insurance, plus no job, plus I'm still in recovery from the last surgery, so basically I mega qualify for their patient assistance. I'm waiting on that paper work, then for the shipment. its a never ending thing. Also I have noticed that being sick and unemployed is a full time job. Between patient assistance and doctors visits and medications I'm on the phone all the time. So anyhoo...why copaxone? Well with all of the Ulcerative Colitis stuff, I just feel like I've been pushing my luck. My last MRI last year was perfect, infact it improved. So it was easy to continue to not take a drug. But now that I keep having surgery after surgery after surgery, I just feel like its time to start something. So I'll keep you posted on all this later. Updates to come soon 06/28/2010
 Hang in there people. I actually have some relevant MS stuff to talk about. I swear. Side note 06/02/2010
 Also as a side note, I'd like to let anyone who reads our blog on the actual URL website to know that our Facebook community is pretty great. There are a lot of people there and many of them comment often. So if you're not on Facebook or not following us, you should because its a great place for your questions. |
