Saturday, May 30, 2009

Me And My Tysabri

(Sung in the tune of "Me And My Llama" from Sesame Street.) This post is in response to Kimberly's comment about wishing to talk to me about Tysabri. Sorry, Kimberly, I can't figure out how to highlight your name to direct peeps to your blog because I am not very technologically smart -- what a glaring understatement that is! So, without further ado -- even though ado is so much fun to further -- here is my experience/thoughts on Tysabri.

Little Background

I started Tysabri almost 2.5 years ago, on my youngest nephew's birthday, after a long and arduous process of me jumping through flaming hoops, going through many long doctors' assessments, and signing my life away -- as if anyone would want my life! I have been on, in chronological order, Avonex, Copaxone, and Novantrone, with unsatisfactory results, some my dissatisfaction and some my neurologist's. I hated Avonex because it made me more tired, sick as hell, and even more depressed, which I had not thought possible. I hated that shot that hurt like a mother trucker and was glad when my neurologist said we needed to change meds because it was not doing a thing for me. Me, in my newly diagnosed state of not knowing much about anything MS or MS meds, thought that you had to be on it for a while to let it "build up in your system" before it would start working. In the 6 months that I was on Avonex I had at least 2 attacks. So we ditched Avonex (YEA! Horns tooting, confetti raining down...) and I went on Copaxone. I loved Copaxone because there was no sickness, no added depression or fatigue with it, and I could shoot up in my own home (my mom did my Avonex shots). The only side effect I had was itchy injection sites; they itch like a mosquito bite. And once I got too close to the muscle and that hurt like HELL! I was on Copaxone for 1.5 years and would still be on it if it would only work with me and reduce my attacks more. When I first switched I went the longest I had ever gone without an attack: 5 months. While on Copaxone I did Novantrone and found that I hate Novantrone as much as I hate Avonex (for different reasons) and the steroids combined. I was SICK SICK SICK for 5 days, stuck in my house for 2 weeks (couldn't risk getting any germs from anyone), and didn't lose a hair -- I was sooooo ready to lose this ratty nest on my head and rock a bald head or even a mullet wig worn sideways, that would have been so cool! So after all this my neurologist decided I needed to go on Tysabri and I concurred, having read up about it and deciding it sounded good.

My Brain On Tysabri

Camera pans to a perfectly cooked egg, because I do not feel fried, at least not from Tysabri. After 2 weeks free from any DMD, I started Tysabri. At first I did it once a month, but I would get what I call The Burn around the 3rd week. I would start getting a kicking up of my old MS symptoms and start feeling that fatigue that makes it impossible for me to be off the couch for too long. All the aches and pains would flare up and sometimes my little sister had to drive me to my infusion because I hurt too bad to drive myself safely. Now, before anyone gets up in arms and wants to brow beat me with a large book about MS, I did a lot of research about this and it is acceptable to do Tysabri every 3 weeks. I even did my research with a very painful razor cut in my arm pit, yet I pushed on anyway -- I'm a real trooper. Even though I have only been doing Tysabri a little over 2 years, I have had over 30 infusions, I can't do the math to give you the exact number so I may be underestimating the amount of times I have done it. I feel the best I have felt since MS barged into my life. In fact, I feel so good I sometimes forget what it felt like when I was on other DMDs and start thinking I could go off it because I'm obviously better -- the same thing I thought about my antidepressants and went off them years ago, only to have a "Major Depressive Episode" and realize why one stays on their meds even though they are feeling better. The only issues I have with Tysabri is that I have to drive downtown every 3 weeks, because I'm a whiny baby, and it takes them forever to get the whole party started. I'm an impatient person by nature and it takes 1 hour for the infusion and 1 hour of observation after (most adverse effects from Tysabri manifest within 2 hours of the starting of infusion). I get so impatient with sitting there for 2 hours I start to tap my fingernails and rock violently in the rocking armchairs they have in the infusion center. I understand that they have to order the medicine once I get there so that it doesn't get wasted, but I hate that it draws out the time I have to be there. I swear the pharmacy takes their sweet ass time mixing up the potion, then lollagags their way up to the infusion center, stopping to talk to everyone on their way. Because I have done Tysabri so many times, I only have to be detained for 45 minutes after the infusion, and I watch the clock to make sure I am not there 1 minute longer than I need to be. Sometimes I want to squeeze the bag to make it go faster, but the nurse told me that the reason it has to be so slow is because the medicine is toxic to the veins and has to be introduced slowly. I still don't care and would like to introduce the medicine faster and get the awkward first meeting over with quickly. (Tysabri, meet veins. Veins, this is my good friend Tysabri.)

I know there is a risk of PML with Tysabri, but I don't care (it is such a small risk anyway). I would rather get PML than go back to my rapidly deteriorating state before Tysabri. My neurologist told me, after I started Tysabri and something finally slowed my galloping MS, that he thought I would go SPMS within 2-3 years if we didn't find something to slow it down. Those are words to strike fear into the very core of me. I don't fear PML, but I do fear the idea of not being able to take care of myself.

Even though Tysabri has the highest rate of reduction for relapses, it is still not 100%. I still have a declining baseline and little nicks and gouges taken out of me, but (knock on wood) it is better than it was. My current neuro said that if I start not benefiting from Tysabri the way I was, then I will go off of it for awhile and start it again. Not sure what the current research says about that, but I am going to take her opinion on it. It scares me to think of going off of it because I do not want to go back to a raging case of MS, attacks almost constantly, only a few months reprieve between and never returning to my original baseline. No, thank you, but it was so kind of you to offer!

All in all, I feel better than I have since this disease moved in with me and would recommend Tysabri to anyone who has the option to do it. I can't think of any side effects -- not saying there are none, just that I do not have any that I am aware of besides my extreme impatience with having to sit there for too long, wondering if the friggin pharmacy people all fell into comas and no one seems to care except me. It has helped me tremendously and I hope it helps others as much.

Okay, I am done. Now I am off to Wal Mart to get a loaf of bread, stick of buttah, quart of milk and some lawn mower oil -- it's getting low.


Young Wisdom said...

keep us updated on the tysabri. I'm on Rebif and am currently having an attack. So - how long before you know a drug isn't working? -
PS - thanks for the comments on my blog! Please come back soon!

Czes Kulvis said...


Are you happy with medications you are using? Have you had any side effects?

I am asking, since I've stopped my initially quite agressive MS (confirmed by 3 MRI scans) over 10 years ago - completely without ANY synthetic pharmaceuticals.