Tysabri or relapse?

[saucygrl]

Recently I've been having all sorts of muscle cramps in my legs and lots of spasticity in my hips.  I've read that it can be a side effect of Tysabri.  I've been really careful about my diet and supplements to make sure I'm getting the nutrition I need.  I've also been stretching like crazy and sometimes it helps, but sometimes it causes the muscles to cramp immediately.  

I had an MRI a couple of weeks ago and I definitely have 3 new active lesions so I don't know if that could also be causing it.  I've had 4 infusions and don't seem to have any other side effects.  I'm not sure what to do about it.

Thanks for your help!
Chris

[rendean]

I agree that is the MS flaring. I have the same issue with muscle spasms right now because I had to skip a Ty infusion. MY neuro assured me it was the MS trying to flare not the Ty and the yesterday's Ty infusion should help quiet it down.

This is my 15th infusion and this is first time I've had muscle spasms. so, what he said fits the scenario for now.

I hope things improve for you. Hang in there!

Ren

[saucygrl]

Thank you for answering my question!  I was kind of thinking it was just due to the MS and not the Tysabri.  My neuro told me that my MS is being very active right now and Ty is definitely the way to go.  I'm not wanting to give up on it because other symptoms are better.

Thanks again!
Chris

[mayperl]

haha!  oops, this is the MS community forum!  LOL

I answered this Q from my main page Questions to answer.  

Boy, do I feel like a dope.  I thought I recognized this name.

how funny!

[mayperl]

Chris -

I had 14 infusions of Ty and the only side effect I had while on it was mild migraines and other symptoms flaring up about 1 week prior to being due for my next infusion.

I can also say that prior to Ty, I was on another DMD for 1.5yrs that didn't have any positive effects on stopping lesions from being active or growing.

Since being Dx'd, I've had extreme pain in my hips and thighs and sometimes the heels of my feet, but that last one is rare.

While on Ty, ALL my sx's went away.  Every one except migraines. (stabbing eyes, blurred vision, prickley skull, burning legs, numb arms, stabbing in the side of head like an ice pick!)

Ty was a miracle drug -- IS a miracle drug.  Stick with it.  Without it, you would be so much more worse off.

I went off it because I became JCV+ and the rest is a personal decision.

My point, the pain is a MS sx, not a Ty effect.  I was told the deep hip pain is caused by a deep spasm so close to the bone that you cannot see, but it is a spasm.  Forget the technical name.  Metaxalone was prescribed for me and it helps about 80% of the pain.

I hope I answered your question, feel free to ping me if you have any more.  I'm also in the MS community forum, and you can search Tysabri in the search field in that forum.  We've had a ton of discussions on the drug.

:)  Hope you feel better soon!

-Mayperl