Tysabri Report: 3 Weeks Later
So it's been just over 3 weeks since my first Tysabri infusion, and I'm slated to go for my second infusion this Friday. In general, this month has been fairly smooth. As I reported that day, I had no allergic-type reactions during the infusion and the worst "after-effect" I had was a bit of a bruise on my right arm that has long since disappeared.
However, what I have noticed is this sort of "manic" feeling: one of my close recovery friends told me she thought I seemed pretty "hyped up" the day of the infusion and since then I've calmed down only a little... On top of that, I have had trouble shutting my brain down at night and getting to sleep. I knew these things were a bit of a problem, but last week I noticed I was starting to feel anxious and self-conscious and a bit paranoid. And when having a big glass of wine started sounding like a really good idea, I picked up the phone and called my shrink, who was able to get me in on Saturday afternoon.
Fortunately, dinner out with my aunt and uncle from New York managed to take my mind off work and life in general and after sleeping late on Friday I felt significantly better. But I still went to see my psychiatrist on Saturday and, as I expected, he suggested I re-start the anti-anxiety medication (Buspar) he'd prescribed while I was still on the Copaxone. I was on that stuff for all of a week, I think, and it did nothing at that time but make me feel like a zombie...
But with the new anxiety and edginess I was feeling, the doctor thought I could use a bit of tempering to help with the Tysabri side effects, so I started taking a low dose of that on Saturday afternoon and, thankfully, I'm already starting to feel much better.
The last time I talked with my shrink about Tysabri he'd tried looking it up in his big book of medications and the stuff was still too new to be included, so I brought him one of the 12 different copies of the Tysabri prescribing information Biogen has sent me in the last month. My shrink opened this up and read through it and seemed to find the information about how the drug works to be really interesting. He tried explaining it and, as I am not a scientist, it went straight over my head. As far as I'm concerned, though, if I'm not having a negative reaction and I'm able to tolerate it, that's a win. (Hopefully it is working to combat the MS, as well! :)
Still, I'm feeling better and the Buspar seems to be helping, for now. I do need to call my neurologist this week to let him know I've started taking another (yes, another. GAH!) medication, but I don't anticipate that being an issue that would keep me from getting my next infusion. So we'll see... In the meantime, I'm pleased that I seem to be able to tolerate the Tysabri even if I have to add another medication to my regimen to do so.
Comments
Keeping my fingers, toes, and eyes crossed for you that this drug makes a difference! Funny you should mention that anxious feeling as I have also noticed an onset at times since starting Tysabri again...of course, I just chalked it up as my ongoing and underlying neurosis!
Linda D. in Seattle
Posted by: Linda D. | June 9, 2008 11:34 PM
i noticed absolutely nothing when i took tysabri. so much so that i got a little worried they gave me saline instead of tysabri. (yes, that is a bit paranoid, but no more so than usual for me - i'm very prone to conspiracy theories.)
i'm just hoping it works with my (and your) ms!
Posted by: jen | June 11, 2008 04:03 AM
Hi Zee,
I'm not sure if I've ever left you a comment before or not. I found your site through the Carnival of MS Bloggers and have been known to lurk in the shadows.
I hope the Tysabri works out well for you. I'm on Copaxone, but haven't had any problems with it at all. After reading about your experiences, I'm kind of surprised because I have a tendency to get depressed, but haven't had any depression at all since being on Copaxone. Lucky I guess!
I was diagnosed with MS in the summer of 2006, too. I woke up one morning with double vision and freaked out! But since that went away I haven't had any other attacks.
I really just wanted to say good luck with everything, and I like reading your blog. You take good pictures, too!
Posted by: Chris | June 13, 2008 05:57 AM