Rebound effect

[Ruby]

Hi all, can somebody tell me how you decide if you are having the "rebound effect"? I'm scared that I have it. I had my last dose of Tysabri June 17, 2014.

Thanks, Ruby

[Kimba22]

Hi Ruby,

I'm sorry you think this is happening.

The rebound effect is when there is an increase in disease activity after the discontinuation of Tysabri. which is basically a "relapse," sometimes severe. I believe the drug stays saturated in the blood for 6 weeks. Some neurologists will stretch out the time between infusions 6 - 8 weeks, in order to allow some patients with high risk for developing PML to stay on the drug. And even if you had stayed on Tysabri, there's still that risk for a relapse.

But, you are in the window when this is most likely to occur (3 - 9 months), so my advice to you is call your neurologist. If this is having a significant effect on you and you can't wait until you talk to your neurologist, go to the ER. Chances are they'll do an MRI and start you on IV steroids. http://www.nationalmssociety.org/Tre...aging-Relapses

I couldn't find much information about this, but here's a few links that I found (the last two are older):

http://m.jnnp.bmj.com/content/85/9/1038.abstract
http://www.ncbi.nlm.nih.gov/pubmed/24720783
http://www.ncbi.nlm.nih.gov/pubmed/24728334
http://www.ncbi.nlm.nih.gov/pubmed/20818793
http://www.medpagetoday.com/MeetingCoverage/AAN/19507

I'm not sure if your doctor had a treatment strategy in place once you discontinued therapy with Tysabri, since you didn't mention one. My doctor treats patients with pulse steroids after the drug is discontinued and now leans toward placing them on Gilenya (I believe around 8 weeks) as the next treatment option. Still no guarantees, though.

Best of luck to you and I hope things improve soon. Please keep us updated.

[Myoak]

Hi Ruby,

I would suggest that you see your neuro. If you are having a rebound he/she will have an appropriate plan of action.

There is little value in wondering or waiting. See your neuro to calm your concern or begin treating rebound.

It is perfectly acceptable to be pro-active.

Best to you!

[Ruby]

Thanks for getting back to me, Kimba & Myoak I did have cellulitis on my butt. I had surgery May 14th which left a huge hole on my left buttock. It isn't yet healed--close but still healing. I wonder if my bad walking is because the healing is still going on. I suppose I should just call my neuro.