Tysabri

[SarahL2491]

I've been lurking lately, trying to sort out my bumbling summer, the heat, my stitches on my thumb and dealing with Tysabri.

In retrospect, the longer I am on Tysabri, the worse I feel, the more pseudo relapses I have and just darn feel crappy most of the time plus my emotions are now bouncing around on the walls.  In trying to find a way to describe it to neuro in October, all I can come up with is that I feel like I am slowly being poisoned.  That sounds weird, but it really describes how I feel.

I've just finished Tysabri #7 and trying to get up the courage to do 8 and 9 before leaving New England in the fall.  I am not sure I can do it. I used to think the other DMD side effects were monsters and Tysabri was the ultimate answer but I can't take the other DMD's because of insurance clashes, so when I started Tysabri,and my insurance wrapped around it so nicely, it sounded like a dream come true

Anyone else have any weird reactions to Tysabri?

[SarahL2491]

I've almost decided to definitely go off of Tysabri and something nags at me that someone either messaged me or posted that there was possibly a re-adjustment period?  or did I just imagine that?

I just have to find a better answer.  I just had so fewer pseudo flares with my plain ole generic MS and they are bombarding me now with the new enhanced Tysabri MS:)  

So I think I have to have a rest before I am so exhausted I cannot function.  My age does make it harder for me to bounce back as quick as I used to.  Perhaps later I might revisit it but for now I am really thinking I need to back away from it for awhile.

I have been putting off talking to Biogen but will probably do that tomorrow!   Am sure they are going to have some interesting comebacks!

[Lulu54]

it has been quite the adventure this summer for both of us... not quite what we had planned, was it?  I hope you can sort out the Tysabri question and get to feeling better.

[SarahL2491]

Thanks!  I don't feel so in isolation land!  It seems to play with other things in your body too, my nails are now flat if I don't let them grow out, my hair has gone dull, and my legs feel oh so heavy on some days.  Nothing in my routine or diet has changed, so that leaves Ty as far as I can see!

I am JC positive by the way and had not thought past the first year, being assured no one converted to the bad stuff in the first year.

[Guitar_grrrl]

Hi, Sarah,

I'm sorry you're feeling so cruddy.  Tysabri has done well for me in preventing any major relapses, but like you, I'm always having pseudo relapses, and just basically, slowly declining.  I don't know that any DMD has a perfect record for stopping MS disability cold.  The research has come up with figures in the 30-50% range for slowing disability (30% for Copaxone, up to 50% for Tysabri).

Hopefully, as Summer winds down, your pseudo flares will settle down, too.  Hang in there...

Hugs,
Lisa

[debgen]

Hi Sarah,

I am so sorry that you are having such a rough time with  Tysbari. Honestly, it scares the hell out of me. I have a neuro appointment next week to see if I will be starting Tysbari. I have been on Copaxone for 18 months and my condition keeps declining. Prior to the Copaxone I never had any serious relapses and I walked with a limp. In the past 18 months, since being on Copaxone, Ihave had 2 very serious and debilitating relapses. I am now disabled, unable to work or walk without a cane or rollator. Obviously, the Copaxone isn't working for me. My neuro wants to put me on Tysbari, saying it should work much better. Last week I went for an MRI and blood test for the JC virus. I see my neuro Thursday to review these test results and decide on the Tysbari.

I am sorry to be so self centerd and ramble on and on, but after reading your post, I am vert scared to try Tysbari. I am so looking forward to try something new and stop deteriating. Now I don't know what to do.

I would really appreciate hearing from anyone else on Tysbari and hear how it as effected you.

Here's to better times,

Deb