New MS website

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

New MS website

Postby better2gether » Mon Feb 06, 2006 3:21 pm

.
Interesting new MS website.

http://mspatientsforchoice.org/index.htm
.
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Re: New MS website

Postby HarryZ » Mon Feb 06, 2006 7:11 pm

Better,

better2gether wrote:.
Interesting new MS website.

http://mspatientsforchoice.org/index.htm
.


Too bad the people on this site didn't make one more request....that of having a responsible, honest pharmaceutical company who would place patient health ahead of quick profits and handle Tysabri properly. That would pretty much eliminate BIIB/Elan from the picture!!

Harry
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Re: New MS website

Postby DenverCO » Wed Feb 08, 2006 3:33 am

HarryZ wrote:Too bad the people on this site didn't make one more request....that of having a responsible, honest pharmaceutical company who would place patient health ahead of quick profits and handle Tysabri properly. That would pretty much eliminate BIIB/Elan from the picture!!

I was impressed by the site. I hope that it is "introduced as evidence" at the upcoming FDA Advisory Committee because it represents the opinion of many other PWMS.

Harry, I suggest that you create your own consumer watchdog website that represents the opinions of the Tysabri opponents who are sceptical of the motives of Biogen. You could be the voice of the minority of the PWMS who oppose the re-introduction of the drug.
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Re: New MS website

Postby HarryZ » Wed Feb 08, 2006 6:37 am

Denver,

I was impressed by the site. I hope that it is "introduced as evidence" at the upcoming FDA Advisory Committee because it represents the opinion of many other PWMS.


I'm sure that the FDA would look at comments from these people as "opinion" as opposed to the scientific evidence that they are seeking regarding Tysabri's safety issues.

Harry, I suggest that you create your own consumer watchdog website that represents the opinions of the Tysabri opponents who are sceptical of the motives of Biogen. You could be the voice of the minority of the PWMS who oppose the re-introduction of the drug.


Trying to keep up with visiting 6 different MS forums takes up enough of my time, thank you :) There are enough medical professionals out there that have voiced their concern about Tysabri...they certainly don't need me!

Biogen's motives aren't a mystery...they are plain and simple....profit...the more and faster, the merrier!

Hey, I'm not opposing the re-introduction of Tysabri. If you have read many of my messages in the past several months on this forum or others, I have openly stated that the FDA "will" re-approve the drug. There is too much money involved here for it not to be. My main beef has always been with Biogen/Elan and how they handled the entire introduction of this drug in the first place!

They went too fast, ignored their own original time-table and ended up with the mess they have today. That didn't have to happen. If they had done things properly, Tysabri would likely be in use today with the docs and patients having the proper information about it's safety. The patients, with the help of their docs would be able to make an "informed decision" as to whether they would want to try it.

My opinion about Tysabri is that it is a risky drug that, if taken by the wrong patients, poses a danger to them. But if any patient wants to use it, that is a decision to be made by the patient. At the same time, the patient has the right to know as much as possible about Tysabri and that info originally wasn't available.

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Postby Chicano » Wed Feb 08, 2006 9:58 am

Friends,

I enjoy this website, it is informative, interesting, and represents a wide variety of opinions. I hate this disease and remain frustrated that there are few treatment options available for us. As patients, we must be informed. That being said, I do not care if Tysabri generates profits for Biogen. If the CEO can buy another private jet, fine with me! Just get the drug back on the market and make it widely available. We need it.

I love this new website, the FDA does make an honest attempt to listen to patients. It's a factor they will consider when making this decision. I sent my letter and I encourage others to do the same.
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Postby bromley » Wed Feb 08, 2006 2:15 pm

Harry Z,

Trying to keep up with visiting 6 different MS forums takes up enough of my time, thank you


I like you a lot but found this to be very sad. I visit MS websites because I have MS and I hope to one day catch the news that there has been a major breakthrough. As someone without MS you could be doing something much more interesting - like fishing or bowls.

We know Biogen might have played their card better, we know they are profit motivated (they are a commercial company after all). But they also have developed a treatment which appears to be vastly better than those currently available. Of course only time will tell. And when I look in my crystal ball there are bound to be a few more PML cases in the next couple of years and posters like you will play the I told you so card. But some experienced good results from this treatment (and no doubt some didn't) and it keeps people going until the next treatment becomes available (which is more than likely a Biogen backed treatment - Dacluzimab or Rutuximab).

I think you need an anti-Biogen / anti-Tysabri break. Wait until it is reapproved, wait until more data is available on a larger number of patients. And then come back and tell us that you told us so.

Enjoy the fishing.


Ian
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Postby HarryZ » Wed Feb 08, 2006 6:23 pm

Ian,

I like you a lot but found this to be very sad. I visit MS websites because I have MS and I hope to one day catch the news that there has been a major breakthrough. As someone without MS you could be doing something much more interesting - like fishing or bowls.


Wait a minute here....I'm not complaining that I spend too much time trying to find as much info about MS as I can. My note was in reference to a suggestion that I start up an anti-Tysabri website and moderate it. That would be the last thing that I would want to do because of the huge amount of extra time that would be required to even attempt something like that. Please Ian, ask for a clarification on something that I have written as opposed to taking the wrong meaning from it. I think you know me well enough to do that...OK.

I think most readers on the MS Forums know that I am not a vindictive person and would not wave the "I told you so card" in someone's face. I know that ANY potent drug such as those used in MS can cause some real problems and having lived with a nurse for over 30 years, have a fairly decent understanding of medicine. There are always two sides to any story and I attempt to give the other side when it comes to Biogen/Elan and Tysabri. I get private e-mails from readers who agree with what I say and urge me to continue giving my point of view. As we both know, I also get a few nasty comments from a few readers who disagree with me quite strongly. I fully expect that kind of response from some people and accept it....as long as it doesn't become personal.

I think you need an anti-Biogen / anti-Tysabri break. Wait until it is reapproved, wait until more data is available on a larger number of patients. And then come back and tell us that you told us so.


I suppose I could turn that comment around and say we need a break from the Biogen/Elan sales/marketing people who have lead MS patients down a garden path without first checking what's on that path! It's too bad that they didn't "wait until more data was available" before going full steam ahead with this drug. They have provided a lot of anguish and anxiety to MS patients that really wasn't necessary.

Take care.

Harry
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Postby bromley » Thu Feb 09, 2006 3:51 am

Harry,

I wasn't suggesting you were complaining. I was just expressing an opinion that there must be better things to do for someone without MS than to go on so many MS websites (or even any MS website).


we need a break from the Biogen/Elan sales/marketing people


But you can take a break Harry, by not going on MS websites or reading the marketing material. This is self-inflicted.

Ian
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Postby HarryZ » Thu Feb 09, 2006 7:22 am

Ian,

I wasn't suggesting you were complaining. I was just expressing an opinion that there must be better things to do for someone without MS than to go on so many MS websites (or even any MS website).


I've been following MS research since I was 14 because I had an uncle who had the disease. I married Marg who had MS at the time and have been in this relationship for 30 years. I have seen, first hand, the kind of suffering this disease can bring to others and that is why I have spent and will continue to spend so much time on various MS websites. I will be the first to agree that my perspective can't be the same as the person who has MS but I have been able to help many people despite this.

But you can take a break Harry, by not going on MS websites or reading the marketing material. This is self-inflicted.


But why would I want to do this? I enjoy visiting these sites because one can learn a lot about the disease as well as the views and opinions of those who suffer from it. I also offer a different point of view in many cases and many people have told me that they appreciate this. Of course, others don't agree with what I have to say at times. But isn't that what these forums are about....to share and exchange points of view?

Take care.

Harry
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Postby bromley » Thu Feb 09, 2006 7:28 am

Harry,

It's a free world so keep visiting.

My enjoyment will come when these sites don't exist because this disease has been ended and the damage done repaired.


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