Tysabri "rebound"

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Tysabri "rebound"

Postby Loobie » Wed Sep 09, 2009 6:02 am

Thanks to my brains (Marie Rhodes :lol: ), I have been looking into a rebound effect that is reported in Tysabri. I plan to bring this up to Dr. Dake and right now this is the donkey I'm pinning my non improving tail on. It makes sense and there is a bunch of informatin out there regarding this. This is a quickie article to explain it, but it sounds plausible and I'm going with it for now since I need something to keep my chin up! Here it is:

A Tysabri “rebound”
After last night’s HealthTalk program, “Overhaul your Treatment Plan,” I went to watch my Mariners use the long-ball to win their 85th game of the season. I love baseball and just about everything about the game. But last night I was distracted from something that had been briefly mentioned on the HT program. Or as they say in the South, “There was a raspberry seed in my wisdom tooth and I just couldn’t get it out.”

One of the doctors on last night’s program mentioned a new study about Tysabri that prompted me to do a little more research.

In my everyday world I talk with people living with multiple sclerosis on a regular basis. I hear of people’s success and of their challenges. I’ve also heard a lot from people who were on Tysabri during its original trials and/or right after it was approved. Many of these same people had to stop taking Tysabri when it was taken off the market. Since that time many of those same people have told me that there was a downward slide in their condition when the drug was stopped.

I’m a firm believer in the power of anecdotal evidence. If it seems like a number of us with MS are experiencing something, I think it’s worthy of further study. However, I also understand that until that study is performed it may just be some people talking.

Well, now that further study is trickling in there does indeed seem to be a problem.

In a small study based upon this anecdotal evidence, researchers have noted what they have deemed a “rebound.” In this case a “rebound” is an increase in brain lesions.

According to the study, 21 subjects had MRI scans of their brains before taking Tysabri and another MRI performed within a 15 month interval after they stopped the drug. The study was divided into two groups: one group took the drug for an average of three years, and the other group took the drug for an average of two months.

In that 15 month period, these 21 people had an average of 3x the number of brain lesions after stopping Tysabri than they developed in the same period before taking Tysabri. The summary I read was not clear if that was 3x the number of brain lesions as the developed lesions in a 15 month period prior to Tysabri or 3x as many brain lesions as they had before Tysabri.

Key to this study was how long a person took Tysabri and when they stopped. For the group of subjects who took the drug for only a couple of months, the “rebound” was a whopping 5x previous lesion load!

Further study is obviously required.

I think that this is yet another reason we all must consider our drug choices carefully. The MS drugs are not something we should expect to work overnight; they are long term treatments.

As I hear and read more about this topic, I’ll share. I hope you will too. In fact, I hope you’ll share your experiences if you have stopped Tysabri treatment. I hope you’ll share your thoughts on staying on any drug therapy. I hope you’ll let us know what this makes you think.

Wishing you and your family the best of health.

Cheers,
Trevis


Sounds and 'feels' familiar.........
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Postby mrhodes40 » Wed Sep 09, 2009 6:47 am

GOOD LORD!! 8O 8O Mention "I think I remember reading of a rebound with tysabri but I don't know anything about that, could you be having something like that?" and THAT is what you found out??
8O 8O 8O
I'm hoping that you can get some support from the neuro if that is the case with you! Steroids or something.... he didn't talk to you about a rebound at all, I guess, when you did not come for your next infusion ?

It makes you wonder if these drug companies just figure you take it once they get you for life. Did you find anything in the literature about this rebound?

I wonder if any of the other MS drugs have any kind of rebound ...........

Lew I am sorry :cry: i hope it resolves well with support
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby catfreak » Wed Sep 09, 2009 7:40 am

Hey Lew,

Man I wish things were better for you. I wonder about the Ty myself. I go back Monday for #7 and then on #8 see my Neuro. I am very conflicted about stopping they Ty. I feel like I need to see what happens with the stents before I stop. I will go back to see Dr D in November and will know more then about the stents.

You know it scares me to think if I stop Ty my lesions could multiply by 5X or am I reading this wrong. Crapola!! 8O 8O

Cat
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Wed Sep 09, 2009 7:49 am

Thanks Marie,

Just google "rebound effect from Tysabri" and you get a bunch of hits. No, my neuro. never mentioned it to me, but he isn't a fan of the drug. As a matter of fact, he isn't a fan of any of the drugs and prescribes them only after really talking to you about it. This guy is new to me and I like him, but he's very hands off, which I like. What I mean by that is he is very receptive to what YOU want to do with your disease management. As with all things MS, I have educated myself as much as I can to make sure that I know what to expect. There's nothing worse, for me anyway, to have no idea what's going on, when it will end, yada, yada. So as I find more out, my mind gets more at ease as I know this is a plausible explanation of what's going on with me; maybe it is and maybe it isn't, but it's at least plausible. I think you're right though, that Biogen has no impetus to publish that information since they want you on it for life!
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Postby MaggieMae » Wed Sep 09, 2009 8:02 am

On our last visit for my husband's Tysabri infusion, the nurse was telling us that they are (in a trial at the Center where he gets infusion) having good success with the pill, FTY720. Working as well or better than Tysabri. I'm sure my husband will switch to the pill when it becomes available.

Lew, Maybe having the vein issues that Dr. Dake did not fix in combination with going off the Tysabri is causing you not to feel as well as you should. Wait until you meet with him on your upcoming appointment.
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Postby LR1234 » Wed Sep 09, 2009 8:24 am

What would be interesting to see Lew (well not interesting you know what I mean) is to see if your lesions have multiplied.
This will tell us for sure whether the stents are providing any form of protection against the MS. I know you feel the same as you did before the procedure but that could be some sort of withdrawal effect or rebound effect from the Ty like you mentioned. If no more lesions appear on your brain maybe once this period has passed over you will start to heal.
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Postby dignan » Wed Sep 09, 2009 8:47 am

Loobie, here is an abstract of a study that was done last year on the rebound effect: http://www.neurology.org/cgi/content/abstract/72/5/396

The conclusion is:
We did not observe a clinical, radiographic, or immunologic rebound phenomenon after discontinuation of natalizumab therapy.
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Postby chrishasms » Wed Sep 09, 2009 9:08 am

123
Last edited by chrishasms on Sat Dec 05, 2009 6:22 pm, edited 2 times in total.
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Postby chrishasms » Wed Sep 09, 2009 9:10 am

I am willing to bet he doesn't have any more lesions. I am just betting his body is just run down from the drugs.

I have no lesions and my legs sure are tired again lol.
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Postby Loobie » Wed Sep 09, 2009 9:29 am

They'd never see a radiographic rebound phenomenon on me. I don't seem to have new lesions, despite progression. Does that make me SP? My neuro. thinks so, but like the article I pasted stated, alot of this is anecdotal. However, there were a few I perused this morning that spoke to an almost doubling of the lesion load, so like all these things, there're probably as many stats supporting or not supporting this as Carter's has liver pills.

So Leanne I don't think I'm going to show any more lesions since mine are so hard to find anyway and my neuro. and Dr. Dake had the same comment that my lesions looked like "splashes of color", whatever the hell that means. I progressed on that shit and there's no way I'm going back on it. I'm trying LDN about 3 weeks post surgery this time. I suppose I'd consider Copaxone if I started up fast again as it's the only "formula" I haven't tried, but I'm going sans meds right now. Like I said a few months ago. I'm 'guinea pigging' this procedure full tilt. If I was still on Tysabri, how would I know if it was really the surgery? Having too many things in play can muddle results. That may be foolhardy, but that stuff wasn't doing anything but costing me a fortune in my opinion. I have contradicted myself by saying I'm going sans meds and then talking about LDN, but I'm just talking about the pricey, immunomodulating drugs. LDN appears to be pretty benign, so we'll see what we see, so Maggie I'm definitely taking the wait until I get to Cali. attitude.
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Postby Rokkit » Wed Sep 09, 2009 10:02 am

Lew, it's getting hard to remember the details of everyone that's been treated, so I might be wrong about this, but I'm pretty sure almost everyone is RR. There are only a very few progressives so far, so isn't it a little unfair to your psyche to compare your progress so far to all the RRs? A dr. at the symposium said he has evidence of remyelination and he exclaimed "No one is lost!" We know for sure you are "someone" so at least according to this guy you are not lost, now that you've been treated.

I know the Italian guy (GiCi I think?) said he was progressive, but he's just one guy who had a great result early on which may be why he was excited enough to come on and post.

Hopefully when Cheer gets back we'll get some good info about progressive MS because so far the silence has been deafening. I know one of her goals was to find out all she could about it though, so soon we'll know what she knows.

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Postby Loobie » Wed Sep 09, 2009 10:40 am

Rokkit you're right. I don't know if I can add to that! Thank you.
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Postby sou » Wed Sep 09, 2009 12:20 pm

Hi.

IIRC, when Biogen representatives were asked about the rebound evidence at a conference, they said that they were not interested in researching that. This is somewhere in this forum...

sou
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Postby Loobie » Wed Sep 09, 2009 12:49 pm

sou wrote:Hi.

IIRC, when Biogen representatives were asked about the rebound evidence at a conference, they said that they were not interested in researching that. This is somewhere in this forum...

sou


Doesn't surprise me. They are no longer reporting Ty deaths anymore either.
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Postby mrhodes40 » Wed Sep 09, 2009 3:16 pm

I progressed on that shit and there's no way I'm going back on it.


This is the real bottom line. If it was not working anyway why risk all the issues and absorb the costs of such a drug? The risks from it are significant enough that it darned well better provide some protection from a relapse, if it can't even do that then what is the point.... Dignan offered something that concluded there was no rebound, but there seems to be a lot of posting regarding material suggesting there is one... :?

Here is a synopsis/expert comment of a study showing no rebound

http://www.springerlink.com/content/m19j033631h44833/

use the large view on your text and squint at it with your glasses. Two things jump out at me, first the number of patients evaluated is tiny, 23.
(ahem--and how many has Zamboni seen?)

second there is a comment on it that may explain why this study was different from two earlier ones that did show a rebound....I will type a quote from the paper --typos will be mine no copy/paste on that


The authors for this study concluded there was no evidence for a rebound 14 months after the discontinuation of natalazumab. The difference to the other 2 studies published on this may be explained by the short term treatment in these studies. In the editorial comment by Scheiss and Calbresi, the limitations of the study were pointed out 1. only 21 patients (total number 23--mr) had relapse rates evaluated only 12 had EDSS scores, only 16 had MRI's, and a smaller subset had immunologic measurements. Reading through the article it is remarkable to note that only 4 of the 23 patients were not receiving medication after cessation of natalazumab, most of them were taking interferon. This might have prevented a relapse.... one of the 4 not taking any medication had 2 relapses. All in all this is a first step towards getting more data on natal. and further long term studies will be needed...this means that Natal will continue to keep the MS community in a constant state of flux as pointed out in the editorial.


The study they were evaluating was obviously very limited in terms of its significance. I could not find readable copies of studies that showed a rebound, but I found this comment on the 14 month study to be a good analysis of why it is of limited authority considering its limitations of size and data.

It is a little hard to say there is no rebound when you were giving medicine to stop a rebound in most patients and one of the 4 who did not get a drug had 2 relapses...........

If it were me I think I would talk to my doctor about this issue and maybe ask for something to alleviate the inflammation and potential lesion expansion.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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