This Is MS Multiple Sclerosis Community: Knowledge & Support

I Googled it, and yup it did come up with a lot of links. But all of them referred to one Dutch study of 28 people. One study. Another study showed there is no "rebound effect" that is statistically provable.

So which to believe? I know my neuro believes there is a rebound effect, and you HAVE to go on another therapy as soon as you come off Tysabri. But is that based on a 28 person study from 2007?

this is all just my thoughts here but:

i think that there is no such thing called "rebound effect" with tysabri.
i believe that if you stop tysabri for some time and take no other drugs and you get worsening on your ms its just "natural", not rebound.
because when i had no drugs what so ever my ms went worse about once every month, now taking tysabri and nothing has happened anymore, at least i dont seem to be worse, dunno whats up in my brains though.

if id stop tysabri i wouldnt be surprised if my ms comes and gets worse again, but still i just dont believe its a rebound effect there.

Tough question.

Tysabri will leave you with increased interferon-gamma and TNF-A levels, which are known to be potent pro-inflammatory agents. In addition, Tysabri's inventor had seen this happen in early phase B trials, back in the 90s. I can't find the time to look for it right now, but you may search both in this forum and pubmed.

What pisses me off, however, is the declaration of Biogen and Elan that they are not interested in investigating the matter.

I can only wish there is no rebound effect.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

What I remember of the study - it was posted on ThisIsMs about 3 years ago - was that it was done on patients who had come off Tysabri after the recall. The majority of the study group had only been on the drug for less than a year and the most striking stat. was that the longer that you'd been on the drug, the less of a rebound effect there was. I, of course, was freaked out by the study as it came out 4 months after I started the drug! My neuro says that the study was small, and never duplicated. She has had 3 people come off Tysabri for periods of 6 months to a year, with no rebound effect. I've been off Tysabri now for 4 months - no issues yet.

I've been searching and searching to find any real data and all I can find referenced is that Dutch study, which doesn't really count as a scientific study to me. My neuro's PA said that she's seeing another person who came off of it after 1 year, as is their protocol, and went on Copaxone and is dealing with IRIS or immune reconstitution inflammatory syndrome. I searched for that and found it tied to HIV, and hardly any information on it when I searched with Tysabri.

This is infuriating! If there is such a thing, why is there no information on it??? I think I agree with dino84.

What just pisses me off is that I wasn't told about any of these "problems" with coming off of it when I started it. Now I'm having issues and sure enough there's a "reason" why I can't come off of it and take my chances with the disease until something better comes around the bend.

IRIS?!

That sounds like a red herring to me - IRIS is caused by plasmapheresis, which is used to get Tysabri out of your system as quickly as possible if you have PML. Either your neuro's PA doesn't have a clue, or your neuro has a patient who developed PML...

Just in case this shows up in other people's searches for Rebound Effect +Tysabri (I know it did for me!) here's what has happened to me since my last infusion on 01/06/10

Went through the same roller coaster as usual for the first month, as expected. Had to reschedule 1st February infusion appt. Suddenly felt almost 100% better after missing it for 1.5 weeks! Cancelled February infusion since I had an appt. with neuro the following week. She saw my improvement and agreed that the issues I was having were Tysabri based and we agreed to discontinue Tysabri. Because I have had severe reactions or side effects to Rebif and Copaxone I am completely off treatment.

Note: The reaction I had is rare, I'm sure. So rare they don't even tell you it is a possibility. Issues included all-over body pain so bad that I could barely walk (mobility was/is fine before/after Tysabri), fatigue so severe that my life consisted of work and sleep and occassionally sleep at work (!!), and cognitive issues. With these issues I was quite sure that I would be unable to continue working within 6 months to 1 year on the outside.

I felt amazing for ~1 month + 2 - 3 weeks following the last infusion. Only my real MS symptoms were showing, which thankfully for me are fairly mild - spasticity, fatigue, some generalized and nerve pain. Following 2 weeks I had issues again - generalized and nerve pain were again pretty bad, however still nothing compared to what it was when I was on treatment. I'm thinking that this is because my body is either getting rid of the Tysabri or going through "withdrawals". They don't tell you about this part either. Getting better daily; cognitive, fatigue and mobility issues still most improved

I've been off Tysabri for 5 months or so and no rebound so far.

I'm sure there are some people with this issue, but it sounds much like a Biogen scare tactic...."If you go off Tysabri you'll be in BIG trouble".

I agree, I think it was a red herring. They can't just flat out say "You can't stop this drug" but they will tell you as many horror stories about stopping as they can.

The FDA Medwatch Safety Alerts from last month, 02/05/2010, include this bit that will by included in the Tysabri drug label and the Patient Medication Guide:


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Glad to hear that you haven't had any problems! I definitely agree that it's a scare tactic propogated by Biogen through the TOUCH program.

When Biogen called me to see if there was a reason that I had missed my February infusion, she didn't say boo to me about anything. Just asked if there was a reason or if there had been a change in treatment plans, I said yes I'm not taking Tysabri any more. She asked if this decision was made with my doctor, I said yes, she said they would follow up with my doctor and did I have any questions. That was it. Didn't ask me why, to get my side and my doctor's understanding of it, or anything. Pretty telling to me how much Biogen cares about patient impressions of their drug.

I'm 2 full months from my last infusion and feel OK. Honestly I do think that the Tysabri was doing what it was supposed to do with the MS, but I could not take the side effects of the drug. Again, I do know that I am likely a rare case with those side effects, but I am sure glad I'm off treatment right now!

I can't say anything about the science of the rebound effect. I can only relate to you my single experience.

I was on Tysabri for 12 months, went on "drug holiday" at neuro's insistence, felt great for 3 months, had an exacerbation in 4th month (not too bad), went back on after 6 months. I have now been on Tysabri for a total of 24 months (2x12). I went off in January 2010 for another "drug holiday"and in February I had the worse exacerbation I have ever had.

I believe in the rebound effect. Two drug holidays, two exacerbations, the second one sooner and more severe than the first. So it may not be true for everyone but it is true for some of us. It's not just a scare tactic by Biogen.

I'm seriously wrestling with going back on (for the rest of my life) or not risking PML & going back to Copaxone or another drug. After reading these threads, and experiencing my body's reaction to rebounds, I'm thinking of taking my lumps and staying off.

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Kat

I should add that when I went off Tysabri the first time, there was no rebound effect on MRI, only in my disability. I haven't had an MRI yet for this "holiday".

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Kat

I was on Gilenya for a year and one half. I stopped it and 4 months later I am having a very bad flare. I believe in the rebound effect for G. It is not proven to happen in G. But I have been told it can happen for all the drugs that "tank" the immune system. If I had known this I would not have ever started this drug.
I felt bad from the 3 month I started it, one side effect after another. So I finally had to stop it. Now this, no dr warned me. Hence I don't think I can stand another PUKE, CHOKE AND GAGE.
I was feeling pretty good when I started G. It was that almighty goal for more and taking the best new oral.
I did what the good dr said. Now I would love to sue.
I was thinking about going on TY. I don't think I ever will. I have become more knowlegable of this rebound effect.
If your one that doesn't get it great! But if you get it your totally screwed. It happens in about 40% of cases. Those odds sucks.. We havent come too far in the way of ms meds if you ask me.
Biogen is the one who told me about it.