Starting Tysabri
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trustinghim81 posted:
Hi Everyone,
I am starting Tysabri in a couple of weeks and am curious if there are any "tips" or info that the doctors didn't share or things that might be helpful.
I have had MS for almost 13 years and have been on Avonex and most recently Copaxone.

Stephanie
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hackwriter responded:
Hi Stephanie,

I took Tysabri for about 18 months. I don't know how your doc has prepared you for the infusions, but I would suggest that you drink plenty of fluids prior to the infusion and take a pain reliever if you are so inclined.

I stopped the infusions mainly because I was a difficult puncture; I have tiny, well-hidden veins and had to endure a couple of hours of unsuccessful punctures each month while they tried to find a good vein. I ended up spending the whole day at the infusion clinic because of it.

Also keep in mind that the nurse will have to ask you questions from a script each time prior to infusing. They involve asking you about changes in your symptoms since your last infusion. If you answer yes to any of those questions--that is, yes there has been a change for the worst--the nurse will send you home without an infusion and tell you to see your neuro before resuming infusions.

That's all I can remember for now. Good luck with your infusions, I hope you'll tolerate the drug well and that it will help you. Please do give us updates about your progress.

Kim
 
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icelander1 responded:
Hi Stephanie,
I was 'on' Tysabri for a bit more than one year. I was an easy patient as I have easily accessible veins.


Prior to your infusion I would recommend you take one acetaminophen, 1 non drowsy OTC allergy pill and be sure to bring something fun to read!


I found the process to be a breeze: whats not to like about a 1 time per month treatment? As I was JC Virus positive, my Neurologist and I chose to switch back to Copaxone.


Good luck with the therapy.
Mark
PS. I was diagnosed 26 years ago.


I

 
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trustinghim81 responded:
Thank you both for the advice. I have had infusions for Steroids before due to a couple of severe flare ups so I know that them finding a vein wont be a problem;) My doctor did warn me about the questions and explained why. However he did not say anything about the pain reliever or water. I will definitely do both of those!
I have already been tested for the JC virus and tested negative and that is why my doctor thought this would be a good option. I pray that it will go well.

I will let you all know how it goes. Thanks again!

Steph