Rebound effect

[sewhappy]

I was at my neuro last wk and started the paperwork to begin Tysabri. I am still waiting to hear about the financial details which could halt everything. I appreciate the info in another recent thread regarding cost.

There is one last nagging question for me about Ty. I have read about the rebound effect. Asked my doc, he didn't seem to know much which kinda surprised me.

There was a recent post here that said up to 60% of folks experience this...wow!

So many people seem to do so well on Ty for several years, but then to go off of it as you will have to at some point, and then get possibly worse seems scary.

Please share your experiences or knowledge you have about this "rebound effect".

Thanks!

[BigA]

I find it hard to believe that your Neurologist has never heard of the Tysabri rebound effect. Maybe you should consider a 2nd opinion just to make sure.

Here's a physicians' website from 2007 advising doctors how to speak with patients about it. I'm sure if you search, you can find even more current info. Again, hard to believe anyone prescribing Tysabri has never heard of it.

http://www.medpagetoday.com/Neurolog...Sclerosis/6674

[sewhappy]

It wasn't that he hadn't heard of this, he was just a bit vague. We had been discussing Ty for several months with no mention of it. He is usually full of facts and figures but when I inquired about this, he just said yes, sometimes you can revert back to baseline.

I was aware of the Dutch study and hoping to find something more recent. I have a call out to my neice who is the pharmicist in the family and a great resource for me.

Just curious also how this issue has played into other peoples decision about whether or not to take Ty.

Thanks again for the reply BigA

[Special Kay]

This was a big concern of mine since I'm considering starting on Tysabri.

My neurologist said that people generally return to their previous level of disease activity within about 4-6 months of stopping Tysabri.

If you had very low/no disease activity before taking Tysabri the chance of having a rebound relapse is very low.

[knuckle]

Happened to me after I stopped after 18 infusions.

I always had this image of Tysabri with these little hooks preventing those rogue T-cells from crossing the blood brain barrier. Once you stop taking Tysabri they just come flooding back again.

However, with BG12, "Fumaric Acid Esters" or "Dimethyl Fumarate", you've got similar efficacy by actually modulating the immune system which should make BG12 a good follow-up therapy to Tysabri if you choose to stop. BG12 actually seems to modify the disease process at it's source, whereas Tysabri is just temporarily protecting you, giving you "shelter" (hence the name "sabri" which means a desert shelter - I think?)

What's also interesting is that BG12 seems to work along the same lines as vitamin D3, Low Dose Naltrexone and Dextromethorphan in that they all modulate T-cell proliferation in the immune system by generating endorphin production. Endorphins are Hormones that serve to regulate immune system function.

[BigA]

This was a big concern of mine since I'm considering starting on Tysabri.

My neurologist said that people generally return to their previous level of disease activity within about 4-6 months of stopping Tysabri.

If you had very low/no disease activity before taking Tysabri the chance of having a rebound relapse is very low.

But then why would you take tysabri? It seems to me that there has to be a compelling reason to take it, given the risk of PML and the risk of rebound. they are risks which have to be measured against benefit. Sometimes it's clear, but if it were me, I would not get on Tysabri if I had low/no disease activity (even considering that it's under the surface, i'd still start with something else). The

[BigA]

It's not about a rebound effect, but there is another excellent thread here. Inside is a link to biogen data which shows relative risks with different risk factors:

http://www.msworld.org/forum/showthread.php?t=122360

[MsKitty]

There is definitely a rebound effect! I took 51 Tysabri infusions, then got the call that I was positive for JC virus, my neuro felt it was in my best interest to stop Tysabri.(Aug 2011)

I trust my neuro, so, I stopped and went on Rebif, I experienced a relapse of optic neuritis and multiple symptoms within two months of stopping. (Nov. 2011) I was put in the hospital, had a catheter port put in me then received plasma pheresis, since I have had issues with steroids (steroids destroyed my ankle bone and I needed a major ankle surgery). I stopped Rebif then started Copaxone, one month later(January 2012) I had ankle reconstruction and leg lengtherning surgery. I continued Copaxone, was down for three months, I then had surgery number two to remove halo fixator and rods.(April 2012)

I then had to undergo 3 1/2 months of physical therapy to regain some mobility. I was doing pretty well, went for my yearly MRI,(July 2012) I went in for my appt. and was told I had some extremely active and angry lesions. Was immediately told to stop Copaxone, it wasn't working.

It was highly recommended I re-start Tysabri, so, I restarted Tysabri,(Aug. 2012) 4 days after 1st infusion, I got dizzy, and started losing my balance. Within hours the room started spinning, and I could not stop throwing up. I was given meds so I wouldn't puke, The Tysaabri started kicking in within a few days (the room stopped spinning). I also had to do a five day course of Solumedrol. (I hate steroids, but, it was the lesser of two evils) I am praying that the Tysabri works as well as it did last time. I know there are risks, but, I have no choice. I just need to time to be kind to me till BG12 gets approval. If I wouldn't have tested positive last July I wouldn't have stopped Tysabri. This last year has been hell! I can't even believe all that I have been through in the last year it is like a fractured faiytale.

I had infusion number two yesterday, I'm trying to remain positive and hopeful. I don't know how much more I can take, any prayers and/or well wishes are greatly appreciated. I really hope no one has to go through all that I did.

Tysabri worked so well for me in the past, I wish they would find a way to get rid if the JC virus.

Lisa






Lisa

[LL60]

Lisa,
I will definitly say prayers for you.
I hope the second go with Tysabri works well for you.

[MsKitty]

Thank you LL, I appreciate it.

Lisa

[sewhappy]

Good visual, Knuckles...I imagine a mother holding back a toddler from climbing up the stairs and when she lets go....

Special K, it is an extremely difficult decision esp w/low disease activity. The past 2 years I have had lots of activity. 2 relapses after a 6 year period of nothing. Felt great, worked out, put it our of my mind and then bam,the MonSter reared its ugly head. 2004 I tried avonex for 1 yr but couldn't handle side effects. Then on no DMD for next 5 yrs until next relapse, rebounded well but the next yr and a relapse that I still have not fully recovered from. This is why i am considering ty now. Best of luck to you w/your decision.

The thing is, so many people seem to feel so great while on the Ty and there is what makes it so alluring. It is all a cost/benefit analysis with possibly high cost but enticing benefits. I know also some of the current thought is to hit it hard from the start BigA. The frustrating thing is w/all the current DMD's is we never really know if they are working.

Lisa, so sorry about your difficult/challenging year. I can tell from your post that you are strong and I admire your courage. Sending good thoughts and healing energy your way.

Thank you all for your replies.

[lindaincolorado]

Prayer sent ...
I am so sorry for all you have gone through
Linda