Last Rebif shot and first Tysabri infusion.

So my last MRI wasn't good. New lesions on my spine and what the neurologist described as dystonic movements in my upper body which makes balance impossible. So he just reconfirmed what I had known. Rebif is not working as a disease modifier. It's been a hard road with the Rebif I've lost so much physically since going on it. He wanted me to go on Tysabri, and I have been very leery of it because of PML, a brain infection isn't a joke.

So I took the test of the JC virus, which is one of the things that makes PML more prevalent and found out I was negative which cuts down on my chances for PML even more. After a bunch of freaking out and crying and coming to grips and freaking out again, I said yes let's do it.

My last shot of rebif was May 17th. I have not missed the 3 times weekly injections I gave myself.

Last needle of rebif getting injected. yikes.

My last two rebif injection site reactions that last for WEEKS, I also won't miss those! Or the flu symptoms, hard heartbeats, fever and chills with each injection!


On Monday May 20th I had my first infusion of Tysabri.

I went to Allenmore Hospital, to their infusion center. The nurse there (who I've had before with my solumedrol infusions for m.s. exacerbations) helped alleviate more of my fears. The center has been working with my Dr. for 6 years of Tysabri infusions and she hasn't seen one case of PML or severe allergic reaction to the drug in that time, so this is good news.

We talked for a while about that, then she asked me the questions they are required to ask each time you go in which helps with first signs of PML if it were to occur. Then she put the I.V. in me and took blood at the same time to test my liver levels at a base starting point.

It's all bloody, because she just had the port part in and was holding the vein in my arm to stop the blood and had to grab the blood vial for a second and had to let go of the pressure on the vein. HA! Blood everywhere GOOD VEIN! But she got it mostly cleaned up.

My Dr. also prescribes a dose of Solumedrol with the first three infusions of Tysabri to help with allergic reactions. So here it is going in.

Then the Tysabri infusion was started, which takes 70 minutes to give. They then did a 15 minute flush of saline and an observation period of 60 minutes.

It took all told about 4 hours, because of all the preliminary stuff I had to do, in the future it should only be about 2.5-3 hours all together, once a month! There should be no side effects with the Tysabri itself, but because I have to have solumedrol for the first three months I had to deal with that.

Solumedrol comes with it's own joys. Headache, bitter taste, rapid heart beat, flushed skin, hot, and manic moods, water retention, insomnia. It was a smaller dose than usual, but I felt it all night. By morning I felt ok except for water retention that makes everything hurt...still all in all, not bad since it's once a month!

 I also CRAVE meat when I'm on solumedrol. I don't know why. I really don't...but it's crazy. I got some General Tso's chicken and ate it like up like it was the best thing ever, I then Skyped with a friend in Australia for a few hours and was hyper and didn't sleep until 5am.

 So that's my first infusion down and an infinity to go (cross fingers).