Tysabri was not of any benefit to any kind of progressive MS but for mild RRMS.
I have a couple of questions about the Tysabri webcast.. Did someone really say <that Tysabri therapy is not recommended for patients who have failed other therapies UNLESS all other therapies are stopped first!!!!! > I thought Biogen was promoting a combination of drugs as one alternative (from the results of their SENTINEL trial). I hear talk of neurologists adding it to an Interferon in cases where the patient wasn't doing that great on an interferon, as long as there weren't persistent interferon antibodies. Also I recall reading that although 9% of Tysabri patients developed antibodies, only 6 % of participants had persistent antibodies that required them to discontinue the drug.
You say in your remarks that you talked to a MS neuro who said the drug reduced exacerbations and nothing else. From the MRI data, aren't there less enhancing lesions, less T2 lesions and less T1 black holes? I know that doesn't correlate exactly with disability, but all things considered, I would rather have less than more.
And lastly, you say you asked the MS neuro if there were any "positive" changes in the EDSS scores and he said "absolutely none". I am not sure that I would expect "positive" changes--just stability instead of "negative" changes and I will be happy. Did your question include that result?
Anyway thanks much for the info. I saw on another site that a transcript of the webcast will soon be available and that would be great too!
Harry, Harry, Harry... unbelievable statement. You know as well as anyone, because you spend a lot of time reading about MS and treatments, that Tysabri is the far and away best treatment for MS patients at any stage. The drug stops new T cells from getting into CNS where they cause demylination. Come on now Harry.
In the face of overwhelming positive response from neurologists and patients, you continue to rake for something dark. Hopefully the 2 year results and EDSS scores will put these efforts to rest.
Harryz - more hearsay. An 'MS Professional' who is privy to something. That's simply wrong (on the Professional's part) to say things like that and NOT give details. "I've got a secret" How childish of this person on the Braintalk forum, and this person further claims that erroneious information (presumably from Biogen Idec) has falsely raised people's hopes, and then she goes and tries to throw cold water on those hopes WITHOUT PRESENTING ANY FACTS OR DATA. Good grief!
More rumourmongering. Very disappointing indeed. And I might add that on the Braintalk Forum the 'MS Professional' has been criticized and her interpretation of the Webcast has been disputed. I do not intend to get into that, but its important that readers are aware of it - supposedly people 'who know a lot about MS' are making comments that perhaps reflect their personal bias more than the facts. Again, disappointing, but to be honest we ALL have our biases (yours truly included!).
It's not heresay despite how much you want it to be. This person moderates a FAQ section over on Multiple Sclerosis Sucks and gives a lot of sources and factual information on MS and related topics. She is a specialized MS nurse, is a member of the Consortium and "tells it like it is"! Despite how much you trust Biogen and want to believe everything they tell us, I'm afraid it simply isn't' so. And you will discover this in due time.
She has been criticized by readers who simply refuse to believe what she is stating is not in agreement with Biogen's marketing plan. Clinical 1, the poster, has also told the readers that the transcript will be available next week so she isn't attempting to hide anything.
It's also interesting to note that much of what she briefly stated was echoed by my wife's neurologist when I spoke to him on Thursday. And he has been working with this drug for 3 years. While Tysabri will have some benefit to a certain sector of MS patients, he stated it won't be anything close to what Biogen would lead us to believe it will be.
Wonder how Harryz's post at 1226 am on 19 Dec came before my post at 1129 am on 19 Dec 04. Harryz, I guess you're just ahead of me!
I think we're going to have to wait a while longer for more proof in the pudding as folks of all levels of MS are started on it by thier docs. My opinion: The trial was limited in the type of patient treated and short enough that we really don't have good enough data to speculate on future use.
There's also been a great deal of advance "propaganda" (for lack of a better term) by the Biogen crew that has gotten the hopes of many who are probably inappropriate candidates for the med. Not nice. They get lumps of coal in their stockings this year from me at least.
The stated opinion/observation was that those who'd had the disease longer, had a higher EDSS score and were more disabled, did not significantly improve in the trial. Again, this drug does not impact lesion load as the CRABS do but minimizes the frequency of relapse.
Because those of us who've had the disease longer and are more disabled, tend to relapse less often, the testers did not see improvement or significant impact in that group of patients.
Thank you. You are absolutely right and Biogen should have done just that over the past year and not given information that was not approved and gotten hopes up inappropriately.
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