Harryz
Sorry about the link. I simply reposted that info from the Braintalk forum. I should have checked it.
Perhaps the fact that I am using her as a reference by reading her posts and that she has the same doubts about Tysabari that I and many others have, is reason for Observer to cast doubt on her information.
Cast doubt on her information? Yes, I'm afraid I am but I am NOT doing it because I disagree with her (and your) view about Tysabri. I'm just looking at facts, and in the same Braintalk thread/post you reference she has said at least two factually wrong things. And you want us to believe a rumour she promulgates? You believe it if you wish; I think I'll stick to facts.
First, Clinical1 said tysabri did not affect lesion load. The webcast and drug label clearly said/show Tysabri has a signficant effect on lesions. I have no idea how Clinical1 can make the statement that Tysabri 'does not impact lesion load.' If your neuro inferred the same thing, I think I'd be looking for a new neuro, ask him if he knows anything about Tysabri, or at least get him to clarify his statement. For the avoidance of doubt, I suggest anyone read the webcast transcript or drug label (available at
www.tysabri.com). Here is an excerpt from the webcast
"DR. RICK MUNSCHAUER: I agree with Julie. I think MRI - you can't look at an MRI and know what the patient looks like. But I think all of us who have seen patients over many years accumulate T2 burden of disease, accumulate T1 black holes and have progressive atrophy, know that that patient is headed for trouble.
What I think is the advantage of the MRI data is for the AFFIRM and SENTINEL trials that led to the approval of Tysabri®, is that they offer internal validity that, indeed, the reduction in exacerbation rate is a real phenomenon. In the AFFIRM trial, the placebo group over one year grew about 6.1 new T2 lesions, which I thought was interesting, and that was decreased by some 80%, new or enlarging T2 lesions. In the SENTINEL trial remember, all of those people were on Avonex®. Even the Avonex® plus placebo group grew another two lesions on average - 2.1 lesions on average. And I think that implies that Avonex® had had some effect on that patient in reducing new or enlarging lesions, but the Avonex® plus Tysabri® group, that was reduced down to .5. So I do feel that that makes me the gadolinium T1 data is very similar with an 85 or so percent reduction in gadolinium lesions. And, you know, it makes me believe more that the one-year data on Tysabri® is indeed good, solid, valid outcome data. "
And there are other references in the webcast to the substantial reduction in lesions from the use of Tysabri. How anyone would get from the webcast that Tysabri doesn't affect lesions is beyond my comprehension. Indeed, its unbelievable.
The 2nd point Clinical1 made regards the publicity and hype supposedly put-out by Biogen Idec or Elan. Clinical1 makes that statement several times in the referenced post. Where is any of this publicity? I await any proof, other than the clinical trial results announcement and the data given out about these trials by the Companies.
So, again, I'm sure Clinical1 is very knowledgable and has the best of intentions, but at least two of her statements are wrong. Harryz, you're suggesting we believe the 3rd statement from her ('she's privy to some 2yr data and hence is skeptical') in the same post referenced above because she is 'highly credible'? Good grief.
In your view, perhaps I should have told him that his comments were "dark" and "negative" and that there were many neuros who were very excited about Tysabri. I can certainly tell you that he was one of the docs that wasn't!
As above, I'd suggest you ask him whether he has read the drug label. If he said Tysabri had no effect on lesions, then he either can't read or worse. But perhaps you should have asked for a clarification, because one simply cannot ignore the drug label, can one?
And with regard to the comment
But why do I somehow think that you are treating this like a contest of some sort as opposed to an exchange of information where two people have very different views?
Contest? I really don't know how you reached that conclusion. My simple goal is to ensure ALL the information is available to readers, rather than half of it or, worse yet, rumours. If the information I post is wrong, I'm happy to admit it - like I said, I've made more mistakes than I can remember. I wish others would admit their errors as well, or at least state the assumptions/limitations of comments posted as fact.
Further to that, many people (me included) sometimes ignore evidence contradictory to their beliefs and post their beliefs as fact. Take the lesion load issue above - Tysabri's label, the John Hopkin's webcast, and every other factual source I have seen indicates Tysabri reduces lesion load. Yet Clinical1's post and Harryz's wife's neurologist say it does not reduce lesion load. Do I believe the data that I can review with my own eyes, or someone's interpretation of it? Reminds me of the old question 'Are you going to believe me or your lying eyes?'
Other rumourmongering abounds - some have referred to a 'rebound effect' when the data clearly indicates that it does not exist. Posters suggesting an '18 month efficacy drop' have provided NOT ONE SHRED OF EVIDENCE in support, suggesting instead that the reader 'trust' them because it comes from confidential, reliable sources. Yeah, right.
The exchange of information, Harryz, is what I'm interested in. Not rumours, fearmongering, or contests. I've found that sticking to the facts is usually a pretty good policy. I'll continue to do that. If I see others straying from the facts, I'll throw my 2 cents in. Why? Because I am interested in this forum as a couple of people (one a close relative) I know who are afflicted with MS may be reading it, and I'd like to ensure that they get, as Paul Harvey says 'the rest of the story.' (Full disclosure: I am also an investor in Elan.)
Oh, by the way. I'm a stickler for saying Biogen Idec rather than Biogen due to accountability issues. Biogen does not exist any longer, so people can say anything about it and later correctly claim they were not criticizing Biogen Idec. Subtle but interesting difference. Splitting hairs? Maybe, but I note I first posted a link to the webcast transcript on a YMB which DID work, but you chose to point out (twice) that my 2nd posted link did not work (and you did not bother to correct my link - thanks to Ptwo for the correction).
R u splitting hairs? Dunno. Don't care. I don't think 'hair-splitting' or 'contest' comments have any place on this board - I suggest we stick to Tysabri and the facts. Agreed?
But why do I somehow think that you are treating this like a contest of some sort as opposed to an exchange of information where two people have very different views?