This Is MS Multiple Sclerosis Community: Knowledge & Support

For quite some time, it has been known that when a MS patient suffers an exacerbation (depending on severity) there is usually some kind of residual damage done. In most cases some aspect of the damage becomes permanent while other damage is temporary.

Due to the very nature of RRMS, patients in clincial trials are going to suffer relapses and remissions. The big question becomes to what degree the drug being tested influences these relapses and remissions. In the Interferon trials, some patients were given steroids which of course had an effect on the relapse. I don't know yet (at least officially) how many patients during the Tysabri trials ended up getting a course of steroids when they suffered a serious attack.

Again, we have to see the actual studies to determine verification of the data. If Tysabri reduced exacerbations by 66% without the help of steroids and this number holds true throughout the entire Phase III trials, then that would be great....but I guess we'll just have to wait and see.

Harry

This is a little OT but, I just got to wondering, with neuro's setting up infusion suites to deliver this new drug are they also opening up a new profit center for their practice?

I've read of cancer doc's making big $$$$ doing a similar thing. They not only make money on the infusion, but also on the meds, buying wholesale, selling retail.

If our neuro's have a financial interest in a given therapy can we count on impartial advise?

Peter

Peter,

I don't know how the neuros are going to handle Tysabri but you can likely bet that some will want to turn this into a lucrative business. Because it is such a new drug and must be infused, many are probably waiting to see how the situation pans out.

I read over on the Brain Talk MS forum how Biogen plans to market Tysabri. The marketing plan for this is quite elaborate and the note explained how a lot of what they were planning to do.

I do know that the CRAB drug makers influenced neuros. There was a MS clinic in Washington State that was given $ 300.00 for every rx of Betaseron that they wrote. You can imagine the MS drug of choice at that clinic.

Harry

START TYSABRI ON MONDAY, WAS DIAGNOSED WY/ MS ON 11/24/04 THE DAY IT RECEIVED FDA APPROVAL. THE NEURO OFFICE MANAGER STATED THAT IT WILL COST ABOUT $1800.00 AND ANY MARK UP BY THEM. I WILL PAY 20% OF THE COST AND A $20.00 COPAY FOR THE OFFICE VISIT (INFUSION).

Talex,

I know there are several readers that want to know the actual cost to the user for Tysabri. If you could perhaps let us know the total cost of your first infusion as well as how you end up doing in the coming months.

Thanks.

Harry

Hope to be back to work on Tuesday the 7th. Will post all the info possible. Scared, would like to ask for prayers. Thanks.

OddDuck,

I am utterly amazed that someone who has posted over 10% of the content in this public discussion forum could have such thin skin. Moreover, you really should read more carefully.



Again, you miss the point. The actual unkind words came before this sentence when I said, "You do indeed seem to be confused." (And I am not sure this is really that unkind, since you asked us to "call [you] confused.") The sentence you quote actually shows my trying to provide an alternate theory for your seeming to be puzzled by the need for neurologists to evaluate relapses in an MS therapy trial. Also, as some of you may be able to tell, I rate snide writing rather highly.

In any event, I think I do have my answer. You were clearly not trying to achieve any snide (insinuating, slyly disparaging) effect by pretending to be obtuse. Clearly, something else was going on.



I don't think my words overstepped any bounds of civil discourse. You just didn't like what you heard. Anyway, this board is moderated. If my response to your comments was that over the top, then I would like to hear it directly from the moderator. This really is not your job.


You do a lot of critiquing of drug labels on the job? [edited by moderator-- please do not put personal identification information in posts]

I have successfully petitioned a court in the past. But I don't see how your being a paralegal makes you any sort of authority on drug labels, any more than my being a lawyer (or an engineer or the Tooth Fairy) would. I don't think any profession has a monopoly on reason. Based on what I have read, your "interpretations" would not "stand up" in a middle school debate contest. Drafting spurious motions, I suspect, is your forte. You are certainly drowning this forum in paper.


Of course, what was I thinking? I thought this was a discussion forum. They have these things called personal web sites. They are very good for people who like monologues.


Oh yes, I am sure your influence in medical research has been far-reaching. After all, you are a paralegal. Now, is this an inappropriate response to your statement? I just don't know how else to react to such hubris. I mean, are you kidding?



Calling this a personal attack is inaccurate. I have no idea who you are. I attacked the content of your post. If you don't like my tone, feel free to ignore me. (Take your own ill-founded advice.) This should be easy. Most of the time I just lurk.

Having a dialogue should be the essence of the forum. I read your post, and I had something to say. It is called cross-examination in some circles, and it should prompt you to defend what you said or otherwise to clarify your positions. You elected not to do that, but rather to make a big issue of how offended you were.

Now can we get back to the label? Am I reading too much into the antibody statements?

Regards,
Dave

Dave,

Get off it!

And you did hear it from the "moderator" of this Board: I refer you to Arron's previous post to you:



I'd listen if I were you.

You are basically calling me a liar over my confusion of Tysabri's very "unclear" writing on their label. I highly resent that, as anyone would. I have legitimate questions that I have no answers to, nor do I have any conclusions. Snide sees what snide does, apparently.

Now...please move on to someone else who wishes to partake in your particular low "style" of personal debate. It's not me.

EDIT: And for you to post any personal identifying information about me without my permission is totally unacceptable. How dare you assume that right! This time I will not be "respectful" and ask that you remove it, I am demanding that you do so!

Dave

I Find your comments towards a respected member of this community unacceptable. This is a forum for the discussion of multiple sclerosis and its treatments. Not for personal attacks upon members.




Then you are in a small minded minority. I think you'll find that the rest of the members here rate community spirit, logic and reason rather than snide remarks.



Frankly the person who has reduced this to a high school name calling contest is you.

I am sure that Arron will step in here, but for myself, I find Deb's posts informative and insightful. If I disagree with any of her conclusions then I do so with logic and reason. This site is supposed to be a 'broad church' but in my opinion you are one member that it could well do without.

Robin

Dave,

The list of ms symptoms is long but you must be suffering from a new one - nastiness. OddDuck and I have never met but she's provided me with support and hope when I most needed it - she's a friend. If you want to pick a fight take - up boxing.

Bromley

Dave,

Just when we think some order has returned to the discussion, you find it necessary to start taking "shots" at someone again!! Please, do us all a favor and leave the personal angle out of this. Thank you.

Harry

All of my comments specifically address OddDuck's statements. I never called anyone a liar. I am starting to question some of your reading skills, but I am not questioning anyone's honesty. Apparently critical thought is not valued in this forum. If it is not self-congratulatory or fawning, it is "nastiness."

Aaron's statements were general in nature, and were not directed (nor in my view, could they be applied) to my comments. Isn't this forum supposed to be about critically analyzing information about Tysabri? It is not a support group, is it? I want help in making difficult medical decisions. I don't want people to pull punches. Maybe I am alone on this. I will shut up if no one else feels this way, or if the moderator says my input is not welcome.

Clearly, I have gone on too far on this tangent. I will grant OddDuck the last word on this if he or she wants it. I am sure even this will be seen as a "personal attack," but to call the writing on the Tysabri label "unclear" is patently absurd. The label is a litany of facts.

Dear OddDuck,

What "personal identifying information" are you talking about? Everything I know about you came from this forum. Are you asking me not to repeat things that you have said about yourself?

Thanks,
Dave

Ah, order--the hallmark of a one-sided conversation. Sorry to have interrupted the Harry annd Deb Show. We will now return you to your regularly scheduled paranoia. . . .

Dave,

A problem in communication is only a problem if you recognize it....and it appears that you simply don't....so I guess it's a waste of time trying to explain it to you. Sigh!

Harry