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-   -   Tysabri Information and Check In part 2 (https://www.neurotalk.org/multiple-sclerosis/84538-tysabri-information-check-2-a.html)

Grammie 2 3 08-20-2009 12:29 PM

Whoops, I put a Tysabri thread in the wrong place:o It's re my 37th infusion :D

Polar, what good news:D very happy for you!!

Wiz, sleeping always helps and hope you can get that exercise "thang" together;)

Linda

Riverwild 08-20-2009 12:38 PM

...and I answered in the wrong place...:p

Either place, congrats and glad to hear things are working out because you truly are OUR trailblazer! :)

Natalie8 09-01-2009 07:58 PM

I had #15 yesterday. It's hard to believe I've been on Ty. for this long but it seems to be working wonderfully. Nothing much to report. Still had the 2 hour infusion followed by 1 hour of saline. I felt really crummy for only 24 hours. I'm now back and functioning. Not too bad! :)

Grammie 2 3 09-02-2009 04:09 PM

Natalie, working wonderfully, how great :D
Happy for you !!
Linda

Riverwild 09-02-2009 05:29 PM

Wow Natalie! 15 months already? It seems like yesterday!:)

So do you feel as if the steps you took, ie. slowing the infusion, premedicating, etc. helps with the aftereffects you were having?

Glad to hear that you are pleased with the results! :hug:

Natalie8 09-02-2009 10:50 PM

Quote:

Originally Posted by Riverwild (Post 562288)
Wow Natalie! 15 months already? It seems like yesterday!:)

So do you feel as if the steps you took, ie. slowing the infusion, premedicating, etc. helps with the aftereffects you were having?

Glad to hear that you are pleased with the results! :hug:

I know! I can't believe it is #15. Time flies by quickly. Yes, I definitely think slowing down the infusion has helped significantly. The worst effects I ever got were when the old nurse ran the infusion over 45 minutes. I was sick as a dog in bed for 4-5 days--headache, muscle aches, nausea, flu-like stuff. The whole thing is so strange because in the beginning I didn't always have intense side effects--or at least not every infusion. And then some infusions are more tolerable than others but overall they are better since it has been slowed down. This time I drank a LOT of water and went in very hydrated. I think over time you start to figure out your body and its reaction to the drug, just like you (RW) had the pinpoint itching for awhile and came up with a solution.

I think more doctors should suggest slowing down the infusion if people are having any side effects. I was looking through the Tysabri site on www.thisisms.com and I was amazed at the number of people who have had issues -- nothing overwhelming but enough such that I wouldn't say all people going on Ty. should expect a free ride. Nausea, headaches, and dizziness/cog. fog for a few days seemed to be a problem, especially in the beginning months.

I have always been hyper sensitive to medications of all kinds. If I feel crummy for 1 or 2 days a month then it is worth it to me. I certainly couldn't tolerate the Rebif or Copaxone.

Have a good weekend everyone! :)

azoyizes 09-04-2009 03:24 PM

I will have my first Tysabri infusion September 25.

I have a very positive attitude about Tysabri, and I know in my heart that it's going to help me.

So, as a new member of the Tysabri group, I wanted to say hello to all of you. :)

ewizabeth 09-04-2009 07:40 PM

Welcome to the Tysabri group Mary Ann! :) :hug:

ewizabeth 09-04-2009 07:42 PM

Today I had my 30th infusion, it went off without a hitch as usual. :) I came home and worked in my office and puttered in the garden and I feel great! :)

Riverwild 09-04-2009 07:48 PM

Welcome to Tysabri Mary Ann! Looking forward to hearing how you do! :)



Wiz! 30 ROCKS! I am #30 Thursday! Hard to believe we are that far along, huh? :hug: Yay for coming home and having a normal day!:D


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