RW,

Thank you for reminding me of my wife's death at the hands of MS. I guess experiencing her fight with the disease for 35 years as well as watching my uncle fight the disease (and lose) doesn't give me any insight at all with what has gone on in this area in the past 4 decades!

"Spreading the spew from Biogen's Jim Mullen"....now that's an interesting take on his interview. The man who holds all the cards on what and how happens to Tysabri making those comments. You have just made my entire point about Biogen and their "concern" for the welfare of MS patients. Their concern, controlled by Mullen, has little or nothing to do with MS patients but everything to do with making as much money as he can for Biogen and eventually himself. That's EXACTLY why I don't trust what Biogen tells us about Tysabri and why I mentioned there are other issues brewing with this drug. His audience in that interview was the investment world and he told them not to worry about any new PML cases which were expected! And you accuse me of "rumour mongering"?!!!

Yep, they saw what it could do alright...potentially make them $ Billions. BEFORE the drug was even approved the first time, Biogen partially outlined their marketing strategy on the internet, showing how they would quickly overtake the MS medication world market share. They were cautioned many times by the docs who discovered the drug about its potential problems but that didn't stop their very aggressive campaign.

And why would a responsible drug company combine a powerful drug like Tysabri with Avonex without knowing any long term safety data about the use of Tysabri on its own? Again, we see Biogen's concern about the health of MS patients!!

So now we are supposed to believe Biogen's data when it comes to Tysabri??!! During the Tysabri trials in the MS clinic here, my wife's neurologist point blank told me that Biogen's reputation in the MS clinical world was one that was not trusted!!

If you believe that then you are totally out of touch with reality. The vast majority of MS patients use what their docs tell them to use.

This happens to MS patients who have used, Betaseron, Avonex, Rebif, Copaxone, Bee stings, Prokarin, Novantrone,LDN, stem cell transplants, Noni juice, etc etc etc. The results of various MS medications are all over the map just the same as the disease affects its victims. And like you said, "as the word spreads further"....the marketing and sales word of Biogen!!

I'm glad that Tysabri works for you but I have also read comments from users who have had to stop using the drug. They ran into problems that they weren't told about prior to starting the drug. My wife used Prokarin for 7 years and she ended up with many of the same results that you did on Tysabri...and she had SPMS.

Nobody here is trying to "protect" you or anyone here from making a choice on which medication you want to use. But please don't try and attack a viewpoint from another perspective and use personal comments toward me in doing so. Like I have said, everyone is entitled to an opinion.

Well, at least there is one good result!

Harry

Facts, like anything else, are in the eyes of the beholder!

Harry

I'm sorry for your loss I did detect you were viewing things from a different perspective, and knowing that helped me understand more about you. It was not a low blow, but facts about who you are.


A dear friend whom I worked with for years lost his wife just last year to MS. He is currenly an alcoholic and I think he will never get over his loss. I also lost a SIL to MS in the 80s, she was only in her 30s.

I agree that corporate wealth, even shareholder wealth, is at the hands of those who MUST use medications for a disease such as MS. It's a damn shame, but without the money, they won't have the resources to keep finding new and better drugs for those who suffer. Like I said, its a visious circle for all involved.

If Ty is helping people like RW, than it brings hope. It is giving health. I understand you are mourning and I can only offer my condolences to you. Biogen has a drug that may offer life (not just quality of life) to those using it. There's enough fear with MS...you are living proof of the ultimate price. Let those who have a definate dx of MS choose their path without bringing on panic.

Peace and love to you!
Gj

I think this was uncalled for and totally inappropriate.

Harry has been around NeuroTalk for a long time and I have never read anything from him that deserves this kind of response. Harry has suffered with this disease because of his wife just like our own families do.

Cheryl,

Thanks...your comment is appreciated.

While I don't object to these execs trying to make as much money as they can, I have a great deal of difficulty when they do so over the backs of MS or any other patient who is relying on the information they provide the public in doing so. I couldn't believe reading Mullen's comments to the investment world, that a few cases of PML wouldn't give Biogen any problems. Perhaps the comments were taken out of context but Mullen, in his position, should know what can happen in this kind of interview.

I can understand your criticism of unsupported comments but those who know me and have followed my comments on the forums about MS know that when I state something along these lines, I do so using sources that are usually quite reliable.

Of course they are irresponsible and my post was to simply point out that here is the man who controls the company that decides the journey of Tysabri. Are you saying that this article should not be posted? Should we not provide all sides of Biogen, Mullen and Tysabri so the readers on this forum have the opportunity to decide what they want to believe or not in their decision making? I believe that the readers should get different perspectives on all of this. I guess you feel differently and of course that is certainly your perogative.

I also don't think that it is me who has to provide proof about this article. The publisher and reporter are responsible for that and it is eventually Mullen who has to answer the critics. Don't shoot me, the messenger

I think that the vast majority of people on these forums have the ability to decide what information they place more weight on in making their decisions in dealing with their MS. But I also believe that these people should hear more than one point of view. We already know that totally trusting Biogen for all the information isn't a viable answer....just seeing James Mullen in action creates doubt!

Yes, you are totally correct on that statement. Those who have followed my posts over the past few years know that I am not a fan of Biogen and how they have handled the entire introduction of Tysabri. So that certainly dictates my approach to how I post information. I know that many people don't agree with my method and I don't expect them to do so. But one can disagree, like yourself, and still state that without having to resort to some nasty comments. And that gives me respect for you.

Take care.

Harry

GJ,

As you now know by reading some of the subsequent messages, people will take what you said differently. That's one of the problems about internet communications...you never are totally sure the full meaning behind what some else is writing. Although I'm not just sure what purpose there was in mentioning my wife's death and the fact that I don't have MS and have never had to make a decision on what drug to possibly use.

This just proves how much MS can not only affect the patient but also the spouse or any other relative. Just because someone doesn't have the disease doesn't mean they don't understand something about it. I sure hope your friend gest the help he needs...otherwise MS will indirectly end up causing him untold problems

Like it or not, MS drug development is in the hands of big pharma. But that doesn't mean it has to operate like the Biogen's of the world. Read about how BioMS has developed and currently testing their SPMS drug and one can see the difference of what is possible.

I don't dispute that Tysabri is helping several users. That's great. But the drug is powerful and it alters how the way your immune system works within the brain. I don't believe that Biogen took the proper precautions in introducing the drug and thus its history of related problems. And from what I have been told, there may be more problems. I just wish that Biogen would be more above board in their handling of the drug and that hasn't happened.

My intention is not to place fear in the thoughts of a MS patient who is contemplating the use of Tysabri. I just want people to do all the research about this drug and not just believe what Biogen promotes all the time.

Thank you...and the same back to you.


Harry

That is not what I am saying. I think the article should be posted. That is not what I am questioning at all.

My only criticism is unsupported comments that are made on forums that are widely read by MS patients that scare them for no reason.

Hi Harry,
Unfortunately this friend retired and stays home. I do hope he comes out of his depression before he kills himself. DH reports that when he saw him last, it didn't look good. He lived for his wife of some 35-40 years, had no children and its heartbreaking to say the least.

FWIW: I understand where you are coming from. Nice to meet you

Sometimes one isn't able to provide the details of sources for various reasons. I'm not trying to scare anyone. Mullen, on the other hand, certainly has created a hornet's nest with his interview.

Harry

We were married for 32 years and we had no children...a decision made by the both us after discussing the situation with Marg's neurologist prior to getting married.

You are right in that your friend is in real danger because of the depression. Gee I hope he gets the help he needs before it is too late.

Very fortunately I have been able to manage my grieving process fairly well since Marg died. I did a lot of things that kept me from becoming depressed and for that I am thankful.

Harry