Tysabri Update from ER

[SarahL2491]

Most know my unhappy experiences with Tysabri recently but DH drug me home from the ER early this morning.  Had been nauseous and upchucking since Monday after my August Ty infusion 10 days ago.  Nice doc, ran tons of labs (only WBC was elevated) and x-rays and wonderful meds and hydration fluids.  He and I both feel was Tysabri side effect.........now the interesting part is that I seriously burned my esophagus and now have days of liquids and meds while it heals.  So anyone on Ty, please read those side effects and take them seriously, they can get you into trouble before you know it.

Not sure what am going to use for DMD now, thinking of a nice rest period of NOTHING.  I've been off my regular MS meds since Monday, so may not restart those til tummy is back to par.  

Just thought you guys might find it interesting.  It's the worst side effect I've had yet.  Those of you on chemo have my extreme sympathy and compassion.  I don't know how you do it!

[mayperl]

Hi Sarah -

Thanks for sharing, and sorry to hear about your experience at the same time.  I'm recently off Ty, myself.  On my 12th infusion (afterwards) they told me I was JCV positive.  I decided to continue infusions while I thought about what I wanted to do.  I received 2 more.  My 14th was my last one, 7/3/12.

Since then, I've had a very mild case of migraines and burning leg for about a week, but other than that - what I have noticed is fluctuating emotions.

Good thing is that I notice it!  Bad thing is that they happen at inopportune times like, while driving, at work, or irrational conversations with DH.

lol

I can laugh about it because they fluctuate.  I'm not dumpy and gloomy, but when I spoke to my specialist about it yesterday he said that was a common symptom of coming off of Ty.  I did notice that it made me feel so good while on it.  Like, life was perfect and I was normal, with normal people problems... I didn't have relapses.  I didn't notice my MS.

Being off Ty is like going off an anti-depressant.  It's weird.

I bring all this up bc Lulu mentioned relapse rate of going off Ty.

My specialist said that I am still in the "window" for a relapse even though I haven't officially had one yet.

Let's cross our fingers that doesn't happen.

I hope you feel better soon and heal quickly!

[SarahL2491]

No, I didn't but after last night, don't feel I have a choice.  My body does not like Tysabri.  

[Lulu54]

Gosh, Sarah, this sure wasn't expected.  I am so glad he drug you to the ER.  Did you see the study about relapse rate coming off of tysabri? I know me talked about it here.  Be sur to find it to read.  Feel better, L