This Is MS Multiple Sclerosis Community: Knowledge & Support

Bebe



This is one of the reasons that reading only what Biogen puts out in their press releases doesn't necessarily give us the entire picture. These releases are very carefully written to maximize the positive aspect of a product....something every pharmaceutical company is good at doing.

That's why it is so important that the peer group of MS docs review the trial data when it comes out. Companies like Seron, Teva and Burlex I'm sure will have some comments to make!

Harry

Note that this is only a small exerpt from the United Press, not a full text inclusive of the study.

not taking up for Biogen, but there had to be a pretty good reason that the FDA sped up its approval of Tysabri. Something really good had to come of it. It is not like it is the ONLY treatment for MS

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Living without pain again

http://www.gosanangelo.com/sast/news_co ... 45,00.html
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Tysabri for RRMS, SPMS, and PRMS !

From the February edition of "MS Connection" a magazine from "National MS Society"

Q : Who should take Natalizumab? (Tysabri)

A : Natalizumab has been approved for persons with relapsing forms of multiple sclerosis. That includes anyone whose MS undergoes waxing and waning of symptoms.
Relapsing forms of MS may include those with relapsing-remitting MS, progressive-relapsing MS, and those with secondary-progressive MS who experience relapses.
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From the largest Dutch newspaper "De Telegraaf" (translation)

BREAKTHROUGH FOR MS PATIENTS

This year there will be a drug - for which remarkable results are expected - on the market for MS. This new drug ensures that patients with this serious disease will not have to end up in a wheel chair anymore. Moreover, deteriorations like difficulties in walking, pain in the hands and fatigue are reduced by a stunning 67%.

Current medication cannot avoid that MS patients end up in a wheel chair. A worldwide test shows now that the new drug Tysabri decreases disability by 42%.

Neurologists treating MS patients are very upbeat about these results. The drug is on the US market since December last year. The drug will be registered in Holland and other European countries by the end of this year."
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Comments from a participant:

MS Tysabri seminar recap


"Seminar was hosted by Biogen/Idec.
70-75 MSers and guests in attendance
Main speaker was a Neurologist also with R/R MS
Guest speaker was a Pediatrician(wife of the Neurologist)
3 Sales Reps and one MSActive source volunteer

Main topic of seminar: Tysabri(natalizumab)

Main speaker is nearing his 3rd Ty infusion like myself. My SPMSer buddy from across town also showed up so there were actually 3 of us at the seminar that are already on the big Ty.

The Doctor himself was an AVONEX SWITCHER! Thats right, he took Avonex for seven years! He's strictly on Tysabri. He made a very profound statement during the lecture. He said going on Tysabri is like getting 2/7ths of his life back. Let me repeat that: He said taking Tysabri is like getting 2/7ths of his life back.

Those who understand the ABCRs like myself and the good doctor understand what I am talking about. He also said around the first few weeks after his infusion it was like a huge cloud lifted from over his head. Wow, the good doctor explained the Tysabri euphoria better than myself(typhoria)! No wonder, he's a neurologist. I will repeat what I have been saying all along that Tysabri will slowly annihilate the rest of the MS ABCR market.

He said he has a neurologist friend who has already infused 100's in his clinic to date. That's right, 100's!!! Out of the 1000 or so patients the other doctor has infused already only ONE patient got a anaphalactoid reaction during the infusion. They just stopped the infusion, gave the patient a steroid, some Benadryl, and observed the patient for a several minutes before continuing on to completion at a slower rate. Awesome.

The doctor covered all the bases in discussing MS and talked about all aspects of Tysabri therapy both the very good and few weak points. The most important statement the doctor made is that most MS specialists will prescribe Tysabri to all R/R MSers, no matter what stage of MS they may be in! Overall it was a great seminar and the MSers in attendance were very excited about this new drug.

At the end of the seminar I showed the doctor why I was getting a "twoforone" out of my Tysabri therapy. He was amazed and asked me if I knew Tysabri would later be approved for RA. I said yeah, thats why I just showed you my scarred and banged up knees!

During a break I had a chance to speak with all three sales reps. They said the biggest problem they face is getting the word out to all the non-medicated MSers and physicians who may live outside of the metropolitan areas of our state.

I later found out that I was one of the first patients in my state to get Tysabri. They knew immediately who I was when I started giving all the details of my Tysabri enrollment last year. These folks were the reps that also worked with my doctor and case manager in getting my first infusion approved and delivered from my specialty pharma. "
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Better,



That is a totally irresponsible statement by the person who wrote the article!! Anyone who knows anything about MS knows that kind of inferred guarantee is ludicrous.

Harry

I agree 100%, Harry. Statements like that do more harm than the misinformed writer could ever imagine.

But just because it was in a newspaper doesn't mean that it was necessarily an article, does it? What I'm implying is that it sounds more like a letter-to-the-editor from some well-meaning but dangerously naive person than anything actually researched by a professional writer.

Flora,



I'm thinking that it was part of a newspaper article simply by the way it was written....like a journalist would do. The quote said it was from a Dutch Newspaper. If it had been a letter to the editor, the writing style would likely have been quite different.

You are so right in how some people may view this....if I use Tysabri I'll never end up in a wheel-chair and my MS will be gone forever!! Sigh!!

Harry

Well, from sitting back and watching now for quite a while (and not commenting much about it, as you all have probably noticed), I see that Biogen's brainwashing marketing techniques appear to be working!

Like Harry says.........*sigh*

Deb

OddDuck,

You haven't used Tysabri, so your potshot at Biogen is just that, a potshot. I hope that anyone viewing this site as part of their "research" into making a decision about thier MS treatment will realize that YOU, just like the rest of us here, are not an MS expert. Many of us have passionate views about treatments, drug companies, etc. but they are based on our own unique experiences. Opinions are like #@&holes, OddDuck. Everybody has one.

Denver,

I'm certainly not going to speak on behalf of OddDuck but I believe her comment about Bigen had to do with their marketing "techniques"and not about anyone's drug research.

It was quite evident in reading that Dutch newspaper report posted by Better that the perspective that some people are getting about Tysabari is that it will certainly stop people with MS from ever having to use a wheel-chair and that the drug is the answer to treating MS.

Like I said, anyone who knows anything about MS knows how absolutely ridiculous that kind of thinking is with this disease. Biogen continues to spread this kind of perspective about Tysabri and has from the beginning even though the two year trial data has not been published.

Let's look at one possible scenario....Tysabri is quite beneficial for some early diagnosed, mild forms of MS. What do we then tell the other MS patients who have a more progressive MS, Tysabri is not effective for them and they end up in a wheel-chair? Talk about spreading a false sense of security!

Harry

DenverCO,

"Potshot".....think again.

And at least I did EXTENSIVE research not only into the integrity of the company itself but into VLA-4 antagonists and integrins, and do not rely solely on press releases and only the viewpoints of Biogen itself. Have you?

I refer you to http://www.thisisms.com/modules.php?nam ... opic&t=560

and

http://www.thisisms.com/modules.php?nam ... opic&t=564

And how do you know that I'm not an MS expert?

But, you know what? You're absolutely correct. Based on the above references I just gave you, I guess I DO just take "potshots" without substantive evidence, and from lack of direct experience from working in the medical and legal industries, huh?

Yep, you're right. Good point, and very impressively said, by the way.

Deb

EDIT: Oh, yeah, and speaking of "potshots", who did you get your training from in that area? You're GOOD at it!

SECOND EDIT: Darn, I keep forgetting! I also communicated these scientific concerns with the FDA, also. Just FYI.

To play devil's advocate, note that the article in question was translated from the original Dutch. There is a distinct possibility something was lost in translation.

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