Monday, August 27, 2007

I Am Saying No To Tysabri

I have been contemplated on trying the multiple sclerosis therapy Tysabri. I actually convinced myself I was going to have my first Tysabri infusion in September. While I was in the MRI machine August 22, I thought about how miserable I felt with the severe nausea and vomiting I've been experiencing from trying a new drug. I was also frustrated when the MRI technicians couldn’t get the IV in my veins to shoot the dye in my system for the second part of my MRI test. That was a first, they had to call a phlebotomist to insert the IV and she had trouble. My motto is if you do not get it on the second try leave me the hell alone.

My veins are gone in my arms, the surviving very small vein in my right arm is hiding and running when a needle approaches it now. The veins in my hands had start running and the ones that didn’t run when I had to have an IV inserted became inflamed to the point were I can not be stuck there again. Call me a coward, but I am not ready to have an IV needle inserted in my chest wall to receive a Tysabri infusion on a monthly basis. I am also not ready to risk possibly contracting PML and suffer the side effects that come with taking Tysabri.

Today I am saying hello to Copaxone again. My MRI’s shows stability in the scarring of my T1 and T2 area. That tells me Copaxone has been slowing the progressing of brain lesions for me. I have been taking daily shots of Copaxone for years and had become accustom to the pain and the sometime injection site reaction after taking a shot. Although some days are worse than others I prefer to stick to a MS therapy treatment that I know is working for me. My stomach, arms, thighs, and hips have enjoyed not being stuck everyday for the last thirty days, but a girl has to do what girl has to do.


Lauren said...

I am so sorry that you had a horrible MRI experience (with injecting the dye that is), and that you have decided against Tysabri.

I wish you bunches of success with your Copaxone injections.

All my very best to you, always.

Lauren :)

Blinders Off said...


My veins in my arms and hands are basically gone and rolling around now. I just couldn't stomach being injected in the chest to receive an IV line for the Tysabri infusion.

I saw patients with their IV line in the chest at the infusion center and I have a sister who have to have hers IV line inserted in the is not a cake walk by no means.

Thanks for wishing me success with Copaxone, according to my last several MRI's my brain lesions are stable and that is good enough for me for now.

reality chick said...

I am sorry the Tysabri didn't work out for you. I have tried all of the ABC drugs (some more than once) and Tysabri is my only option left. I hope you find a treatment that works for you!


reality chick said...

I also enjoyed your blog and put a link to it on mine. I have some more info on mS on mine that you might enjoy. Check out

Let's get the word out there!

Also, being on Tysabri for a year, I am doing my 3 days of solumedral drip because of an attack.


Blinders Off said...

Keli aka Reality Chick

I probably will have no choice, but to try Tysabri once all the other MS therapies stop working for me. Avonex is the only one I can no longer take. Copaxone is doing its job so far.

Thanks for linking me. I will be putting my blog links back up and I will add you to that blog roll. Your site and paintings look great. We do need more MS bloggers in the blogosphere.

I hope your Solu-Medrol infusion come with out any side effects and you get relief from your flare. I have been fortunate with Solu-Medrol when I flare. I call it the magic juice.

In case you didn't know peppermint or a pickle gets rid of the metalic taste during your infusion.

Lauren said...

Awwww D,

I understand, sometimes decisions can be so difficult for us.

I pray that your next MRI scan does not show more lesions, and that the Copaxone will help you. The only problem with Copaxone is that it can take up to six months for it to start working :(

Please keep me posted on your progress, okay?

((( many supportive hugs )))