Saturday, March 15, 2008

Tysabri quitting on me?

I had my Tysabri infusion this month, 2 weeks ago. I didn't get what a usually feel like I get from it. A bit more energy. I've been a bit of a basket case this month. Feeling lots of fatigue, cognitively struggling and having the usual piccadillos from MS. I am processing a lot of things right now - feeling that my career has come to an end for various reasons and that I need to find something else to do for a living, wrestling with my emotions on some issues relating to marriage and sex. It might be the case that I need to take a couple of days off and watch movies non-stop or play music or something.

I'm wondering if anyone else on Tysabri has noticed a decline in the results from the infusion over time.

4 comments:

MSPatti61 said...

I am not sure how many infusions you have had. I just had my 8th on March 6th. Now, I sort of felt the same way you explained on my 7th one. But I realized, I still have to practice smart choices on eating, sleeping and just not to get the overload of the daily life thing. Last week was just unreal. I did a lot of traveling and I was able to do it, but I am sure there will be a price to pay.
I did go to the Tysabri Dr on the 12th and he said not to be alarmed about that. It is sort of the old Two steps forward, one step back. Which on #7 didn't get to go two steps and I started to panic myself. So this is a short week and hopefully next weekend can be a "me" weekend. Just to rest. Resting doesn't mean just laying down in bed all day, but practice what I preach. I am expecting my first grandchild in about.... 35 days, so things are a bit more unroutine. By the way, the time change for me has never, I mean never been good. So, just try to remain calm and do some adjustments and you will be back in no time :) Scary when you think it isn't going to be good any more, for me it was. Please feel free to chat to me any time.
So, treat yourself and try some flip pretzel crackers :)

Anonymous said...

am not sure how many infusions you have had. I just had my 8th on March 6th. Now, I sort of felt the same way you explained on my 7th one. But I realized, I still have to practice smart choices on eating, sleeping and just not to get the overload of the daily life thing. Last week was just unreal. I did a lot of traveling and I was able to do it, but I am sure there will be a price to pay.
I did go to the Tysabri Dr on the 12th and he said not to be alarmed about that. It is sort of the old Two steps forward, one step back. Which on #7 didn't get to go two steps and I started to panic myself. So this is a short week and hopefully next weekend can be a "me" weekend. Just to rest. Resting doesn't mean just laying down in bed all day, but practice what I preach. I am expecting my first grandchild in about.... 35 days, so things are a bit more unroutine. By the way, the time change for me has never, I mean never been good. So, just try to remain calm and do some adjustments and you will be back in no time :) Scary when you think it isn't going to be good any more, for me it was. Please feel free to chat to me any time.
So, treat yourself and try some flip pretzel crackers :)

LISA EMRICH said...

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I am thrilled with the response to the MS Blogger project started at my blog, Brass and Ivory. I appreciate all those who took time to post about it on their blogs. I have discovered even more bloggers who have MS, whether they blog about the MS or not. A new listing is available at MS Blogger Community Project Revised.

Secondly, I'm looking for submissions for next week's Carnival of MS Bloggers. Information can be found at the end of each issue archived at Carnival of MS Bloggers. What I'm looking for this week are posts related to creativity. I discovered so many new bloggers who quilt, or knit, or crochet, or write, or photograph, etc. Basically, what do you do to express yourself?

Thank you so much for participating.

Lisa Emrich

P.S. I also apologize for any increased 'spamming' of blog comments due to my growing linklist of bloggers with MS. For that I am sincerely sorry.

trrish said...

hey mspatti61,

come back and leave me an email addy or something.

I appreciate what you said. You are so right about the time change and the basic self-care stuff. Tysabri can't be a magic bullet.

I'm getting checked for the neutralizing antibodies tomorrow. I hear it takes 3 weeks and it might even be too late anyway, since it has been a month since the last infusion.

Congratulations on your forthcoming grandchild. That will hopefully be fun.