Wednesday, December 3, 2008

Tysabri update, part 1

That is NOT my hand but someone else's hand as they get their monthly Tysabri infusion. The Ty comes in a box like the one to the right of the hand. When I get my Ty it's usually on the side of my right hand below the thumb. Which means I do not go to the bathroom during my infusion because I can only use my right hand for the necessary wiping and that would lead to a big mess. Say it with me, "Ack!"

One of my dear readers was asking about Tysabri so I just thought I'd throw all my info up here for anyone else who may be wondering about it and my process to get this newer medicine.

My major symptoms started in 2004 with fatigue and increased depression. By the end of that year it had spread to numbness on the right side (face, arm and leg), difficulty walking, weakness throughout my body, an atypical L'hermitte's sign (a major vibrating throughout my entire body that struck me for no reason), and nystagmus (a bouncing around of the eyes which can make a gal dizzy). There may have been more but quite frankly, I think that's enough for now.

It took two different neurologists to diagnose me with MS a year later in December 2005 even though I was about as certain as could be that I had it in December 2004.

The first drug I started on (on Christmas Eve 2005) was Copaxone, which is a daily injection that we MSers do on ourselves. I had no problems injecting but I had 5 IPIRs (immediate post-injection reactions) which strike randomly for no reason but feels like you're having a mini-heart attack and makes it very difficult to breathe, move, talk and you feel like a lobster might as its plunged into the boiling water. I went on Copaxone first due to my existing depression issues.

I stayed with Copaxone for almost two years and through two more neurologists (which brings the total number of neuros to 4). In November 2007 the latest neuro and I decided due to some MRI changes and constant fevers and giant raised body welts all over from the Copaxone. We decided together to change to Rebif to see if my body tolerated that med better.

Rebif is a different class of MS med called an interferon which comes with its own special side effects such as flu-like feelings, depression, fevers, and others too fun to mention. Rebif is a three-day-a-week injection but again, the injections themselves don't bother me. I don't freak out about them and never missed one. It was just a quick in and out with some occasional bleeding.

Rebif is a drug that you titrate up, which means you start at a small dose and work your way up to the max dose. It didn't take long for me to have constant fevers again, some cruddy feelings, and major depression rearing its head. My neuro suggested I stay at half dose and I had my Psych R.N. play around with my antidepressant doses and meds. Finally, I seemed to get stabilized with the depression but the other stuff hung around.

Then my liver enzyme numbers started to increase (another possible side effect) and we stopped Rebif for a bit. Then I went back on half dose and they checked the numbers again. Eventually I stopped R again this summer due to liver numbers and feeling cr@ppy most of the time.

My 4th neuro suggested Tysabri as the other interferon injections (Avonex is once-weekly and Betaseron is every-other-day-injections) are similar to Rebif and would most likely produce the same sorts of side effects.

The problem with the 4th neuro is that offered Tysabri one partial day each month and that was it. That meant if you were sick you went without for a whole other month. I think the drug makers made it to be infused every 28 days or so for a reason.

That led me to another neurologist and an okay to start Tysabri in October. I'll tell you more about my personal experience with Ty in part two of this spellbinding blog post. I started this before I went in for my infusion today and I'm cooked as they say at the infusion palace. I apologize for any typing and grammar errors now because I'm not proofreading this one. Night!

1 comment:

Denver Refashionista said...

Thanks. I found this post very informative. Hopefully the Ty hangover is over by now.