This Is MS Multiple Sclerosis Community: Knowledge & Support

I agree with this gentleman's assessment. Although it is a tragedy five have died taking Tysarbi it seems the benefits may outweigh the slight risk!!!

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Hi.

This is your old friend, sour!

Just a personal opinion. If I were on Tysabri and got PML I would rather die than survive, because the disability after PML is really HUGE! Of course, this "gentleman" (who does not have MS, by the way) is making a good effort to persuade investors about how well Tysabri can sell. On the other hand, messing with the integrins is not a good thing to do. How about 10 year cancer risk? What is it, exactly?



They pretend to care about their patients, but they only care about their sales and their image. If they did care about their patients they would research more about that rebound effect. I don't mind that they want to make money. We all do. But their caring face to the society makes me want to throw up.

Tysabri is said to be a better drug than the older ones. Maybe, it is. But what is its impact on the overall MS course? It was licensed based on trials on EDSS < 3. It hasn't been trialed on more advanced patients.

The happier, (because if I get PML I won't die but spend the rest of my life as a plant)

sou(r)

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

I don't care if the side effect got "better" or not. I just kept right on progressing while on Tysabri, so to me, it just is not effective even with no side effects.

Having followed how Biogen has handled Tysabri from the beginning, it doesn't surprise me one bit to see a press article like this showing up. And don't think for one minute that Biogen hasn't orchestrated this release.

They have one of the slickest marketing/sales departments in the pharma business. When they see trouble brewing on the horizon, Biogen circles the wagons and protects their interests which of course are solely financial.

Remember that this is the same company that stated Tysabri was safe. Then when PML showed up, it was because of using other immunosuppressive drugs at the same time. Then when monotherapy patients got PML, the incidence was very low. And when the incident rate started to jump, PML was not necessarily deadly but one could recover!! They are likely already discussing their next strategy for the inevitable increase in PML cases.

I also was astounded to read in this article the reporter stating that certain white blood cells cause MS. Oh really??!! I didn't realize that the cause of MS had finally been discovered!

It's this kind of financial article reporting that Biogen uses to try and ease the financial world's fears of investment in their company. Communication to the Tysabri patients isn't a concern and we have seen how they continue to offer less and less information to this group.

I've said it many times before...I simply don't trust Biogen and never have. And when my wife's neurologist (involved in the Tysabri trials) told me that Biogen's data wasn't trusted very much in the MS medical world, you can see why I am so skeptical about this company.

Harry

Pretty interesting, that that the Biogen exec. is quoting figures like "50% of all adults don't have the JC virus" as if its a well know scientific fact. All the data I've seen suggests worldwide infection with JC at somewhere around 90%. It would be nice to see whether his information is anything but a marketing pitch.

Even if they don't have the JC virus, that does not make Tysabri safer. JC is not a threat at all for a normal person.

What other threats come to light when taking Tysabri that otherwise would not? PML is just the first, because it is a virus and it is fast acting due to its biology. How about cancer, which is a relatively "slow" phenomenon, taking many years to emerge?

Yet another happy relieving article by some Luke Timmerman, unknown to his own mother, too.

I don't want to be misunderstood, scorpion. I have no problem with you but the authors of such stupid articles that couldn't stand to public criticism.

sou

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

I had an infusion Monday and the PML is really starting to weigh on me. There are no other options as I have had it with shots. Well, no other drug options. Maybe CCSVI http://www.thisisms.com/forum-40.html will pan out. Harry, you had a chnace to look into CCSVI? I am curious what you think. A test to know if the virus was building might allow us to stop before physical effects were noticed. Damn few options here.....

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Chuck

No, I really haven't spent too much time looking into CCSVI other than reading what has be written on this forum.

The only connection that I found interesting was my wife's use of Prokarin which increased H2 neuro receptors and those can increase blood flow. She beneffited a fair amount with Prokarin and that could explain one reason as to why. While I don't think that CCSVI is the cause of MS, I feel it is a result of the disease and if fixed can offer a lot of relief. For how long is the question.

Harry

I'm not being a salesman here AT ALL. But my recent (last month or so) improvements after the CCSVI surgery are unlike anything, I mean anything, I've had to peel back lack of function and mobility. I'm doing my job as an engineer right now like it should be done, not like my MS is only allowing me to do it. It has been awesome. MY CASE ONLY is the disclaimer here, but I'd do it again right now; drop my stuff and head to the airport. I have been 4 months out now and was waiting, and waiting. Not getting worse which was cool. But I just can't describe how it feels to be an engineer in a factory that really requires a lot of walking, not being able to do it well for years, and then all of a sudden be able to do it. I can hardly contain myself. Take it as one guy's story. I'm even taking on more responsiblitiy again (I was the plant manager before my MS limited me) and it feels just wonderful. I don't even like talking about it too much lest I jinx it. It's become profound enough now, after months of subtle changes, to be ignored.

Like I said, I ain't selling it to anyone, but me personally? In a freakin' hearbeat. And I was on Tysabri getting worse and I'm also secondary progressive. It's totally weird. You chalk up the first couple to "good days" (which really don't happen that often like they did when you are RR), but it's been a good while. It's like I'm on speed with out the shakes. My three least favorite symptoms are bladder, eyesight and dizziness. My bladder remains unchanged. BUT my dizziness (knock on wood) has not shown up, and my eyesight hasn't even been going out when I work out. Now it's not like I'm running again, but it would go out during my first set of bench presses with hardly any weight. I can't chalk it up to 'good days' anymore. I'm feelin' it.

Harry I know you like to learn. There is so much CCSVI stuff on this board now that you probably hardly know which part of the elephant to eat first because it's so big, but I think you will be taken aback at some of the reasoning behind the theory; and it IS still in that category for sure. To quote Cheer, I'm just sayin..

Sorry to reply to myself, but RuSmolikova just posted this on the thread under this one, and it doesn't sound too positive.

http://www.msrc.co.uk/index.cfm?fuseact ... ageid=1905

I had the same thought about Harry and have always respected his opinions. Seemed like a good time to set him up

Harry, I am sure you have nothing better to do. But i'd be curious what you think after reading the studies that are sprinkled throughout . http://www.ms-mri.com/

I am have spent quite a bit of time reading. Started with an open mind but am leaning twords it being significant. And if it gets tysabri off the table, all the better.

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Chuck

Chuck,

I did one better not too long ago when I asked a person who has done a ton of research in MS (not part of big pharma) to give me an opinion about CCSVI.

I was told that the science behind it made sense and that although it was unlikely the cause of MS, having the procedure could very well help MS patients.

It was also pointed out to me that back in the early 50's, Dr. Hinton Jonez (treated thousands of patients with IV histamine) noted that during brain surgery on MS patients, it was noticed that they had a bluish coloring to their brains. But after histamine treatment, their brains were of the normal redish color showing far better circulation. Back then Dr. Jonez thought that MS was a circulation system disease and that is why he used histamine on thousands of patients at his clinic. And about 80% of these patients showed an improvement in their symptoms.

Sadly, he died suddenly and his clinic closed and all his research came to an abrupt halt. Then as now, the so-called MS experts believed MS to be an auto-immune disease and they ridiculed Dr. Jonez"s work.

Perhaps CCSVI may provide relief to many MS patients but this procedure is going against the current world of MS medicine and we all know how difficult that is to change.

Harry

Luckily, nature has not read our books or else there would be no hope.
-- Somebody I can't seem to remember

sou

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

Difficult...but not impossible, my dear Harry. Make sure to watch W5 this Saturday at 7pm EST for the story of love and healing. Dr. Zamboni is the mate of an MS patient...like you and me.
http://www.ctv.ca/w5/

for sour....

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer,

Certainly not impossible but this procedure has to convince the very closed-mined world of MS docs that it works. And we all know the track record of anything that doesn't subscribe to the MS auto-immune theory which of course they haven't been able to prove!

What I have seen happen over the past few decades when something different like this comes along is the "circling of the wagons" mentality by the established MS world of medicine. It seems they go out of their way to discredit something like CCSVI without even understanding what it's all about.

I really hope that this procedure makes some progress in the fight against MS because what we have been given to date hasn't worked.

Harry