This Is MS Multiple Sclerosis Community: Knowledge & Support

Biogen Idec Inc. has halted enrollment in a large, long-term clinical trial aimed at testing the earlier use of multiple sclerosis drug Tysabri, citing a slower-than-expected pace of finding participants.

The Surpass study aims to test the effectiveness of Tysabri, sold with Elan Corp, when patients switched from more widely used drugs. Tysabri has proved to be highly effective; however, because of a link to a rare brain infection, the patients taking the drug tend to be those who have stopped responding to other drugs or have aggressive cases of MS.,... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1768

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The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

This is wonderful news, the risks vs benefits of this drug are becoming more well known and people are lining up for CCSVI diagnosis rather than this high risk drug.

Finally big Pharma got the message.

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

I was just asked yesterday (4/8/2011) to join the Surpass study. Biogen would pay for the treatments with Tysabri. I am going through the info on it.

I wonder what extent they halted it? I think that I was asked because of the severity of my current status, chance to heal some of the old damage (not black holes but I got those too), and the consideration of going on Tysabri. I got a blood draw to check for JCV antibodies.

Truth is, I am scared to death about going on Tysabri. It looks to be effective, and hundreds of people are benefiting. It is not a long term strategy, and I was told that no one should go on it for more than a couple of years.

No comment about the CCSVI.

Wonderful news? Tysarbi has been a blessing to many people but yeah there is certainly a small risk of PML that patients should consider before starting it. Of course once it is discovered that problem with veins will cure the common cold and every other disease under the sun there will be no need for any medication whatsoever!

Everyone is free to participate to the trial, scorpion, including you and me. You can't force anybody take the risk, can you?

Whatever the reasons, patients seem to be afraid of this drug. Personally, I find Tysabri yet another immune suppressant, rushed to the market, inadequately tested with unknown long term complications against a disease never proven autoimmune.

I find the comments about CCSVI completely inappropriate and off-topic to be posted here. Again, whoever feels that this trial should be helped is free to participate instead of blaming people for being afraid and looking elsewhere for a solution.

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

Just trying to be objective - couldn't the same comment be made about CCSVI? In other words, less than ideal results for Tysabri is accepted by many but less than ideal results for CCSVI seems a threshold point for rejection by many.

I assume you are talking about MegansMom initial comments about CCSVI?

This stuff is hard.

Small risk of PML? Hmmm....it's jumped by 50% for 2-3 year users using Biogen's own numbers. I think that increase alone has made many potential Tysabri users step back and consider long and hard before starting the drug.

Gee Scorp, you are starting to sound like some of our esteemed MS docs who have made similar kinds of comments about Zamboni and CCSVI.

Harry

You do realize only .002% of people on Tysabri ever develop PML? For the people who do get PML it is a horrible experience however it is a rare occurence. I am not promoting Tysarbi or bashing Tysarbi but I am saying it has worked wonders for SOME people. Everyone please calm down. Just because Tysarbi is effective for some people in no way points to the slow and painful death of CCSVI. Geeesh.

Not sure how you got that percentage but if about 50,000 Tysabri patients (those who used the drug for more than just a few months) and 102 have got PML, that is much higher than .002%....like about .2%. Of course that's a small number but when you see that the risk has gone up significantly from what Biogen has preached to us for a few years, then there has to be some real concern.

I do know that several MS docs are very cautious about putting their patients on Tysabri because of this increased risk. There just isn't enough confidence with the safety of the drug especially when the numbers have increased that much.

It's too bad that Biogen rushed the drug to the market and continually try and minimize the PML risk. But that's the way big pharma operates and it's all about the bottom line and share prices.

Harry

..

I'm trying to figure out what the chances of dying in a car accident have to do with the risk of getting PML while using Tysabri!



This obviously highlights the ongoing difficulty MS patients have in trying to decide what kind of treatment they should choose. While Tysabri has documented benefits, (so do the CRAB drugs and look at their dismal long term results) venoplasty has documented benefits as well albeit small numbers to this point since it is a very new procedure for MS. And although the PML risk rate is low (but growing) that's of little consequence to the patient that ends up getting it.

What gets me about venoplasty is the very unprofessional comments by some MS docs who have ridiculed Zamboni's work and called him a quack without knowing much if anything about what he did or is doing. And that just causes more grief to MS patients everywhere.

Harry

Only 0.002% of patients may be getting PML, but nearly 100% of them lives with the fear of getting it. Let's put aside the cancer risk, the unknown long term complications and the horrific rebound effect.

And why must everything be compared to choosing to live with a normal venous system? This is boring and irrelevant.

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

It doesn't matter who did the math, it's still wrong.

(102/50,000)*100 = 0.2% not 0.002%


NHE