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Scared but optimistic with RRMS

 
 
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Old 08-12-2008, 09:35 AM #5
Victor H Victor H is offline
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Join Date: Jan 2008
Posts: 1,090
15 yr Member
Victor H Victor H is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,090
15 yr Member
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Quote:
Originally Posted by Lisa Galda View Post
Hi. I am in the process of switching my med from copaxone to tysabri. I used to be on rebif and copaxone. I had horrible reactions and have to switch. I am thrilled it will be 1 time a month and very scared about the possible side effects. I live in South Jersey outside Philly and have two little guys ages 3 and 5. I also have a big guy age 39 (my loving and supportive husband). I have been on no medicine since July and hopefully will begin Tysabri in October. I would love any advice or tips. Can you drive there yorself for the infusion? Do you get nauseus? skin reaction? fatigued? infections? vaginitis? How do you deal? What do you take to combat it? Is vaginitis like a yeast infection? Do you eat before infusion? What type of skin rash? Does it itch or just look ugly? Does Benadryl help? Do you take vitamin supplements? Do you avoid crowds during flu season? I have a great support system, but I sometimes do not accept help well and am very independent. Any thoughts?
Lisa,

Tysabri is one of the most simplistic medications that I have ever used. After over 23 years with MS, it was a very pleasant surprise to find such a wonderful medication. You will love the process.

Here is what happens:
1) At the infusion center you replay to the five important TOUCH protocol questions.
2) The medical staff then establishes an IV line for you.
3) You have a saline drip for about 30 minutes.
4) You then have a Tysabri drip in the same IV line for about one hour.
5) When the Tysabri in infused completely, the saline drip is turned on again while the medical staff monitors you for about an hour.
6) You go home, happy!

As for the Benadryl, I discovered that all 15 of the MS patients that I have seen at the infusion center do take Benadryl capsules before they get their infusion. I have not. But either way, it would not hurt. If you do so, be sure to tell the medical staff.

You can drive yourself to and from the infusion without a problem.
I have never had a skin rash or nausea from Tysabri.
I do bring some snacks and a book with me for every infusion.
You do get a bit sleepy a few hours after the infusion.
I do avoid crowds during flu season, and I keep a small pack of "handi Wipes" with me at all times to disinfect most everything as needed.

-Vic
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