Thursday, December 4, 2008

Tysabri part two

I've had three infusions at my infusion palace which I adore in central New York. So far, I've met all my insurance deductibles so my three infusions have been "free" but January is coming soon which means I will feel the bite of the "liquid gold" come the new year. I suspect the first infusion in January will cost me somewhere in the range of $500 out of pocket but then I should be good for the rest of the year. Ouch, but it could be much worse. (I believe that the typical cost of the drug and the infusion costs are somewhere between 2-3 thousand dollars per infusion.)

Tysabri is pricey but then most meds associated with MS are, including the injectable meds I wrote about yesterday. Insurance is a huge issue for those with MS (and others of course, too) and coverage can vary from place to place and person to person. I am lucky enough to have great insurance through my employer.

I switched to neurologist #5 because they partnered with a local infusion place that offers all types of infusions three days a week every week. That fit my needs much better than a once monthly opportunity. Ergo the switch to my current neurologist where I see the NP who still seems slightly ADD but in a good way. Not to mention that the place where I get infused is like a swanky hotel where everyone gets their own infusion suite and they have a coffee bar and you get your own TV and DVD player. Oh, and the nurses are great. They get me in one stick every time and I've never had a bruise although yesterday we did switch to the top of the left hand down by my wrist for kicks and giggles.

I seem to have some small side effect issues with the Tysabri, usually involving extra fatigue the day after the infusion. I also seem to have some bone/joint pain in my back in between infusions. That seems to occur closer to the beginning of the time after the infusion and Aleve usually takes it away.

I had an MRI in early November shortly after Ty #2 of the brain which not only showed no new lesions but also showed a decrease in pre-existing brain lesions from an MRI done in May of this year. That's always good news. It doesn't mean, however, that I am miraculously cured of all that ills me. A lot of MS has to do with location, location, location and sometimes damage doesn't come undone.

I'm still very positive about what the drug may be able to do for me. My biggest concern now is fatigue and cognitive issues and one of the nurse's yesterday mentioned that some people get some relief from fatigue around month 8 or so from infusions. I'd love to have more energy and I'd also love to be able to walk at a reasonable pace (dare I even mention jog as I used to be a runner?) and get back some of my intelligence. I want to kick @zz at Jeopardy once more.


Barbara said...

Glad to know the infusion went well. What great information for us! Hope your recovery time is quick.

Denver Refashionista said...

I didn't know that lesions can go away. That sounds very good.

Weeble Girl said...

Yeppers, sometimes things remyelinate just like sometimes the myelin disappears. Kinda great news, huh?

Lanette said...

Thanks for all the Ty info! :)