Appointment for First Infusion?

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Appointment for First Infusion?

Postby amelia » Tue Jul 11, 2006 2:14 pm

Has anyone set up their appointment for the first Tysabri infusion yet?
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Postby Tiramisu » Tue Jul 11, 2006 8:06 pm

My doctor saw me yesterday and his office has been certified as a center for this therapy. He offered this to me, but I am really afraid. I am also very new to all this, but Im open minded to hear everyones opinion.
Mars
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With all that's been written, there's still too much unknown

Postby ohtopher » Tue Jul 11, 2006 9:51 pm

Before you decide, read these articles at the New England Journal of Medicine (you can get a free subscription online)

1) Toxic Leukoencephalopathy http://content.nejm.org/cgi/content/short/345/6/425

2) Progressive Multifocal Leukoencephalopathy in a Patient Treated with Natalizumab
http://content.nejm.org/cgi/content/short/353/4/375

3) Progressive Multifocal Leukoencephalopathy Complicating Treatment with Natalizumab and Interferon Beta-1a for Multiple Sclerosis
http://content.nejm.org/cgi/content/short/353/4/369

4) Evaluation of Patients Treated with Natalizumab for Progressive Multifocal Leukoencephalopathy
http://content.nejm.org/cgi/content/short/354/9/924

5) Progressive Multifocal Leukoencephalopathy after Natalizumab Therapy for Crohn's Disease
http://content.nejm.org/cgi/content/short/353/4/362

6) Progressive Multifocal Leukoencephalopathy — Progress Made and Lessons Relearned
http://content.nejm.org/cgi/content/short/338/19/1378

7) Progressive Multifocal Leukoencephalopathy and Natalizumab — Unforeseen Consequences
http://content.nejm.org/cgi/content/short/353/4/414
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Postby bromley » Wed Jul 12, 2006 12:31 am

ohtopher,

I assume you work for Teva or Serono.

As a balance you might like to add a photo of Richard Pryor or Jacqueline de Pre.

Ian

PS Best of luck to anyone who gives Tysabri a try. PML is an unquantified risk, but the EDSS quantifies MS risk and 10 is dead. We must all make our decisions on the risk we are prepared to take. There is no right or wrong answer. As with everything connected with MS there is no clear data / answers.
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Postby ohtopher » Wed Jul 12, 2006 6:21 am

Exactly my point...know the risk. Some of the recent news, and its associated hype, has neglected to provide fair balance about risk. My doctor talked to me about antigren when it was in clinical trials, but suggested we wait until we know more about the risks. That's my suggestion to anyone considering it now: wait until we know more...and we probably will in fairly short order.
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Postby bromley » Wed Jul 12, 2006 6:54 am

ohtophter,

But some will have to take the risk for the risk to be quantified. If no-one starts it then the risks will not be known - it's a chicken and egg thing. My hat goes off to those who are taking a chance with risky procedures such as bone marrow transplantation where the risk is death. I hope they get the benefits they are seeking but thank them for their courage as the learning from such an approach may help others. I look like participating in a higher risk trial in the autumn - for myself and my family first, but it may also add to the knowledge base. Rather than discourage people, we should applaud them for participating. I hope Amelia's husband sees some benefit if he participates. All drugs are risky and it is naive to think that a highly defined risk will be available on new drugs until they have been used for some time. But MS does not wait and continues to progress.

Ian
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Postby amelia » Wed Jul 12, 2006 8:20 am

ohtopher
I find that most of the people that are just thinking about Tysabri are not bothered much by the disabilities of MS. I know there are those that are just scared. But the disability is a pretty bad risk as well and no one knows if that is the road MS will take them down. If you are not bad off, I probably would not consider Tysabri. But then again, I probably would not consider any of the CRAB's at that point either. BUT, the ones like my husband that are teetering on severe disability, well Tysabri is worth all the risk. You look at both sides of the issue; definite severe disability or a chance a getting a little better. PML is a minimual risk then. My husband is begging for it now, has been since before its return. I'm sure there are others like him. But do watch where the "bad" articles come from.
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Postby HarryZ » Fri Jul 14, 2006 7:00 am

Amelia,

I find it interesting that MS patients who have a mild course of the disease are the ones that wil likely take a wait and see attitude before trying Tysabri. Yet these are the very patients that were in the trials and whom Biogen/Elan say benefited to a great degree.

Tysabri has not been tested on severely affected patients but like your husband, these are the people who are willing to take the risk and try the drug to prevent further deterioration of their condition.

I get the feeling that once Tysabri becomes available again, the more advanced MS patients are going to be the open label trial users for an unofficial clinical trial.

Just another strange aspect of a very complex and complicated disease.

Harry
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Postby amelia » Fri Jul 14, 2006 7:55 am

Tysabri has not been tested on severely affected patients but like your husband, these are the people who are willing to take the risk and try the drug to prevent further deterioration of their condition.


I disagree. It MAY HAVE SHOULD HAVE BEEN, but we know there was a lot of that going on in the trials. There were NOTED people in MISS that had severe MS and it did improve them. It still is no miracle, but if it does 1 iota of help for Gary, then it is worth every penny we will spend, happily.
There were many notations of improvement of sight, walking, spasticity, etc. I am listening to the people speak and NOT the research alone.
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Postby HarryZ » Fri Jul 14, 2006 10:12 am

Amelia,

I disagree. It MAY HAVE SHOULD HAVE BEEN, but we know there was a lot of that going on in the trials. There were NOTED people in MISS that had severe MS and it did improve them. It still is no miracle, but if it does 1 iota of help for Gary, then it is worth every penny we will spend, happily.
There were many notations of improvement of sight, walking, spasticity, etc. I am listening to the people speak and NOT the research alone.


To my knowledge and what I have read about anything that Biogen has published, all of the patients in the monotherapy trial were mild cases of MS.

The combo trials, which included those on Avonex, had a slightly more advanced level of disease.

I have not read any published information about patients who had a severe case of the disease and were using Tysabri. If this kind of patient was using Tysabri, I haven't seen any reports describing the results. Now this doesn't include those patients who got up to two infusions when the drug was released in January, 2005. While some people did indeed state improvement it would be far too soon after only two infusions to come to any kind of conclusion. Do you know of any sites where information about how these more advanced cases of MS did while using Tysabri?

The only other trial data that I have seen is a study done in Toronto where patients who were experiencing an exacerbation were given Tysabri. It was determined that there was no difference between Tysabri and placebo and the conclusion was that Tysabri had no beneficial effect on MS during an exacerbation.

Harry
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Postby amelia » Fri Jul 14, 2006 10:37 am

I haven't seen any reports describing the results.


Exactly as I stated, I don't listen to JUST research. This was case was not in the trial time and was told by a DR that had nothing to gain one way or the other. I still don't know why you read so much in Tysabri, as your wife if not going to be taking it, as stated by you.
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Postby bromley » Fri Jul 14, 2006 12:53 pm

xxx
Last edited by bromley on Sun Jul 16, 2006 6:28 am, edited 3 times in total.
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Postby amelia » Fri Jul 14, 2006 4:07 pm

Ian,
I really would like to meet you some time. I'm afraid the big ocean keeps us from that though.
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Postby HarryZ » Sat Jul 15, 2006 8:18 am

Amelia,

Exactly as I stated, I don't listen to JUST research. This was case was not in the trial time and was told by a DR that had nothing to gain one way or the other. I still don't know why you read so much in Tysabri, as your wife if not going to be taking it, as stated by you.


OK...I thought that perhaps I had missed some article or press release about Tysabri's results on more severe cases of MS.

As for following Tysabri so much....I have followed this drug at the same level of interest as I have the CRABs over the years. The big difference with Tysabri, however, is the way that Biogen/Elan introduced it into the market and the subsequent problems that resulted.

Harry
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Postby HarryZ » Sat Jul 15, 2006 9:43 am

Ian,

As much as I like you, I am developing a new MS symptom - I'm sick to the stomach of HarryZ constantly posting the same stuff on Tysabri. You must have posted the same anti-Biogen / anti-Tysabri posts a thousand times.


It's unfortunate you feel that way and you are entitled to your opinion. At the same time I continue to get private e-mails from readers who appreciate the fact that I continue give another point of view on Tysabri.

Let the people who have MS talk to their neuro and decide if this drug is for them or not. YOU will never need to go on it. YOU should be enjoying all the things that many with this disease have been robbed of - going for a long walk, a round of golf.


I have NEVER told a MS patient that he/she should not use Tysabri or any other MS approved drug. I have ALWAYS supported the fact that a patient has the right to choose what therapy they feel comfortable with as long as the patient has been properly informed about the medication and discussed the options with their doctor.

My question to Amelia had to do with information about severe MS patients using Tysabri and the results that she had mentioned and where the results originated. We hear all the time about huge recoveries from patients who have tried anti-biotics, Aimspro, LDN, stem-cell transplantation, etc. and I was simply trying to learn where she had heard about this. There wasn't any special agenda involved.

YOU say that you have been interested in MS for 40 years - it's time for a break. Let me pick another disease and you can find another drugs company / drug to focus on. I don't know how much Serono are paying you but it isn't enough. Let Amelia and her husband (and the others on this site) make their own decision in consultation with a medical professional. They don't need you telling them about a rumour you heard while standing at the urinal next to a Chinese sailor.


I think that I have been "more than interested" in MS for over 40 years, Ian! I have seen how many of these therapies evolve, how they have been introduced and how disappointing they have been after being promoted to the hilt to the world of MS medicine. Unfortunately, the only people that have benefited the most have been the bank accounts of the companies that have introduced them!

And I include Serono in this group. BTW, I could make the same comment to you about being tired of hearing your repeated statement that some drug company is paying me!

It's too bad that you also feel that I am trying to dissuade Amelia's husband from trying Tysabri. Nothing could be farther from the truth. If I were her husband I would probably try Tysabri as well because nothing else appears to have helped him at all.

YOU HATE BIOGEN YOU HATE TYSABRI WE KNOW THAT - IT CAN GO AS A STICKY. But I can't stand any more - I'm not a well man.


I believe "hate" is far too strong a word to use here...but after learning about Biogen, how they operate and how they handled Tysabri's introduction, I certainly don't have much, if any, respect for them.

Please I beg you - don't post anymore on Tysabri on this site. I don't use any other sites - so please post on them if you really have to.


I trust then that you are encouraging "selective posting" on this site and anything you don't like to read should not be posted. Like I said earlier in this message, there are others who support what I write and of course others who don't agree with what I may say. You don't have to go back too far on this forum to read about others who have been told to stop writing about a therapy they are using and believe in simply because someone doesn't like what they have to say. I may not agree with what they are saying either but I don't ask them to stop expressing their opinion. So with that in mind, Ian, I am still going to post about Tysabri or any other topic that I wish to and I will continue to do so in a polite manner. If my postings on Tysabri upset you that much then I can only suggest that any time you see my name on an article, please do not read it.

That inferior MS website - BrainTalk - is where you belong. They like you there. I like you but not when you keep banging on about Tysabri.


Gee Ian...if the people on BrainTalk read your comment I'm sure that they would be throwing more than tomatoes at you. :) There are some very knowledgeable people over there and they write some excellent messages. As well, some people there agree with what I say and others disagree a lot....same as on ThisIsMs. But I don't think it's very fair to call that an "inferior site"!!

Take care.

Harry
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