PML cases now reach 82!

[Anonymous]

I don't think you're telling anyone anything that people taking Tysabri don't already know. Take it easy, there. No need to get so upset.

The question here isn't about people taking Tysabri or not. That's a decision each patient along with their doc has to make.

My issue is a couple of people on this board who find it necessary to bad mouth anyone who dares to point out factual information about Tysabri involving the risk. It's these few people who keep on repeating the false info that I'm a bitter, laid off/fired ex Biogen employee who has an axe to grind. And it's these same people who incorrectly think that I'm the same person using different names along with the typical "anonymous" people to post their opinions.

Everyone is entitled to their opinion and if someone doesn't agree with what I say, then fine. It's too bad those few people don't have the ability to accept there are other opinions out there which may not agree with theirs but instead lash out with the verbal tirade.

You think I'm upset? Not a chance. But reading some of the stupidity here does make me wonder at times.

 

[Anonymous]

The question here isn't about people taking Tysabri or not. That's a decision each patient along with their doc has to make.

My issue is a couple of people on this board who find it necessary to bad mouth anyone who dares to point out factual information about Tysabri involving the risk. It's these few people who keep on repeating the false info that I'm a bitter, laid off/fired ex Biogen employee who has an axe to grind. And it's these same people who incorrectly think that I'm the same person using different names along with the typical "anonymous" people to post their opinions.

Everyone is entitled to their opinion and if someone doesn't agree with what I say, then fine. It's too bad those few people don't have the ability to accept there are other opinions out there which may not agree with theirs but instead lash out with the verbal tirade.

You think I'm upset? Not a chance. But reading some of the stupidity here does make me wonder at times.

That sounds nice. Except that you're the one who starts all these negative threads...on the Biogen board no less. 82 cases! It's almost like you're celebrating PML. Of course you are...you sell a competing product.

You start these threads, and all you're doing is bad-mouthing Tysabri and the people who make it. People already know all this information. And yet there are still so many people who want Tysabri.

Go on a Biogen board, bad-mouth Biogen, then complain when people speak out against you? How do you expect people to react? I'm afraid you're asking for it, my friend.

And sorry, I have to agree, you plainly do have a personal issue with the company. You're not just some guy who decided to learn about a drug and spend all his time on cafepharma. Anyone can see that.

 

[Anonymous]

That sounds nice. Except that you're the one who starts all these negative threads...on the Biogen board no less. 82 cases! It's almost like you're celebrating PML. Of course you are...you sell a competing product.

Wait a minute...why do you call posting a factual announcement made by several news agencies with information provided by Biogen as "negative"? There have been other threads started here along those same lines. And because the comment was made that it was going to be easier to sell the orals makes the poster a competitor? That's a lot of assumptions, isn't it? I don't think anyone celebrates PML cases if they've ever seen what it can do to a person!

You start these threads, and all you're doing is bad-mouthing Tysabri and the people who make it. People already know all this information. And yet there are still so many people who want Tysabri.

There you go again, equating a factual article with "bad mouthing". That's the problem with some of the people on this board. The second anyone posts an article indicating the down side of Tysabri, the nasty verbal attacks begin. Most of the updated PML messages show the increase in the number of cases and the continual increased risk. Are you saying that this information should be kept hidden from public? If indeed, the potential Tysabri users know the updated information, why do you feel it is such a threat? You are talking out of both sides of you mouth at the same time with opposite views...you can't have it both ways.

Go on a Biogen board, bad-mouth Biogen, then complain when people speak out against you? How do you expect people to react? I'm afraid you're asking for it, my friend.

If Tysabri is such a great drug and if MS patients know all the pros and cons about it and decide to use it regardless, why do you view updated factual postings as "bad mouthing?" I don't mind one bit if someone doesn't agree with me and points out other information to support their case. It's the personal attacks that are made along with a ton of assumptions, especially when some people think they know who I am and what I did in the past. Those assumptions are totally wrong yet they are repeated time and time again by the same people. A bit tiring, don't you think?

And sorry, I have to agree, you plainly do have a personal issue with the company. You're not just some guy who decided to learn about a drug and spend all his time on cafepharma. Anyone can see that.

My issue with Biogen is how they have handled the entire Tysabri situation....too much, too fast and too little regard for safety. Can you imagine how things may have turned out if the normal two year trials proceeded as normal and those 2 initial PML cases were known BEFORE the early approval was granted?

One more issue you need to be corrected on...the amount of time I spend on this board. A couple of minutes at most. Now look at all the other threads that are ongoing here and tell me that I spend all my time here. Also look at the views total on the PML threads...they outnumber the others by a long shot. So it's obvious a number of other people spend a lot of time following this thread and all the stupid comments that are made.

You have an opinion, I don't agree with it But I don't personally attack you, do I? Too bad a few of the others can't do the same.

 

[Anonymous]

Wait a minute...why do you call posting a factual announcement made by several news agencies with information provided by Biogen as "negative"? There have been other threads started here along those same lines. And because the comment was made that it was going to be easier to sell the orals makes the poster a competitor? That's a lot of assumptions, isn't it? I don't think anyone celebrates PML cases if they've ever seen what it can do to a person!

There you go again, equating a factual article with "bad mouthing". That's the problem with some of the people on this board. The second anyone posts an article indicating the down side of Tysabri, the nasty verbal attacks begin. Most of the updated PML messages show the increase in the number of cases and the continual increased risk. Are you saying that this information should be kept hidden from public? If indeed, the potential Tysabri users know the updated information, why do you feel it is such a threat? You are talking out of both sides of you mouth at the same time with opposite views...you can't have it both ways.

If Tysabri is such a great drug and if MS patients know all the pros and cons about it and decide to use it regardless, why do you view updated factual postings as "bad mouthing?" I don't mind one bit if someone doesn't agree with me and points out other information to support their case. It's the personal attacks that are made along with a ton of assumptions, especially when some people think they know who I am and what I did in the past. Those assumptions are totally wrong yet they are repeated time and time again by the same people. A bit tiring, don't you think?

My issue with Biogen is how they have handled the entire Tysabri situation....too much, too fast and too little regard for safety. Can you imagine how things may have turned out if the normal two year trials proceeded as normal and those 2 initial PML cases were known BEFORE the early approval was granted?

One more issue you need to be corrected on...the amount of time I spend on this board. A couple of minutes at most. Now look at all the other threads that are ongoing here and tell me that I spend all my time here. Also look at the views total on the PML threads...they outnumber the others by a long shot. So it's obvious a number of other people spend a lot of time following this thread and all the stupid comments that are made.

You have an opinion, I don't agree with it But I don't personally attack you, do I? Too bad a few of the others can't do the same.

It's not your "factual" postings people have a problem with. That information is all public, which makes one wonder why you bother with it. What people have a problem with are your caustic comments, which have been going on for years. And it's obvious why you feel that way. There's really no need to pretend.

Knowing the facts, people keep on choosing Tysabri, don't they? What would FDA have done if they'd had the information they have now? Evidently they still would have approved Tysabri, considering they still maintain the benefits outweigh the risks.

That's hard for you to take. Oh well.

 

[Anonymous]

It's not your "factual" postings people have a problem with. That information is all public, which makes one wonder why you bother with it. What people have a problem with are your caustic comments, which have been going on for years. And it's obvious why you feel that way. There's really no need to pretend.

If it's factual, what is your concern that it is posted here? MY caustic comments??!! Go back and read carefully and see who STARTED the nasty comments. I guess some people figure it's OK make such a comment but when someone returns the favor, it's the OTHER person who is at fault! And then there's the issue of some people thinking that I'm posting under different names. Actually it's an obsession to these people. Pretty sad, isn't it?

Knowing the facts, people keep on choosing Tysabri, don't they? What would FDA have done if they'd had the information they have now? Evidently they still would have approved Tysabri, considering they still maintain the benefits outweigh the risks.

The number of patients choosing Tysabri is almost stagnant now and that's because of the increase in PML risk over time. It sits at under 60,000. When the risk has doubled for users over 2 years, that effects people's decisions. The docs read the numbers as well.

We really don't know what the FDA would have done initially. I can guess that Tysabri would not have been approved at that time and they would have demanded more data. How long that would have delayed approval is anyone's guess. But one thing is for sure....the top execs at Biogen would not have made the nice little profit by selling their stock just before the PML info got released. That info sat for about 2 weeks, the execs sold their stock and then the news was made public. How convenient.

That's hard for you to take. Oh well.

Actually, it's not hard for me to take at all. The problem has always been the acceptance by some on this board that there are other opinions about Tysabri, Like I said earlier, I don't care if someone doesn't agree with what I state. It's my opinion. And I'm not the only one here who has given different opinions about Tysabri. Those opinions are "hard to take" by some readers. You only have to go back and read the personal attacks on me and the others who voiced those opinions.

 

[Anonymous]

Nice story. Of course, most executives have pre-set stock sale dates to avoid the very conflicts you describe. Do your homework before you speak out your butt. I think there was one person who did something wrong and got booted from the company.

You have started these threads for years. You. No one else. In doing so, you've cast comments like the ones you just made on plenty of people you don't know anything about.

Yet you expect no one to take exception. You can't take it when people take offense.

You walk into someone's house, spit on the floor and expect everyone to just smile at you. Grow up.

Didn't you eventually land another job? Just move on with your life.

 

[Anonymous]

Nice story. Of course, most executives have pre-set stock sale dates to avoid the very conflicts you describe. Do your homework before you speak out your butt. I think there was one person who did something wrong and got booted from the company.

I guess that's why Biogen's counsel was investigated by the SEC and charged in the incident. He was made the sacrificial lamb. So all these top execs were totally innocent of any wrong doing and their chief lawyer didn't tell them anything of what was going on? Sure, that must have been how it happened!!

You have started these threads for years. You. No one else. In doing so, you've cast comments like the ones you just made on plenty of people you don't know anything about.

Well, I'm sorry to inform you that there have been others who have started these very threads. I have contributed to them but there are some people(like yourself) who incorrectly and continually think that I am the ONLY person behind those posts. If you want to think that way, go ahead. You are only fooling yourself.

Yet you expect no one to take exception. You can't take it when people take offense

Of course I expect people to disagree with my posts, especially on a Biogen board!! Read the other threads on this board and you see how nasty the Biogen employees can be to one another and to their own management. But one can take exception without resorting to the personal and nasty attacks that have been made towards me. That appears acceptable to some but when I reply back in the same manner, all of a sudden I'm the one who has a problem!!

You walk into someone's house, spit on the floor and expect everyone to just smile at you. Grow up.

If you call posting factual information about Tysabri as "spitting" then I guess you have a problem handling other's opinions. So I guess you are saying it's OK for people here to be nasty to me but if I reply likewise, then I'm the one who has a problem? Please!!

Didn't you eventually land another job? Just move on with your life.

Why do you insist in thinking that I ever have worked for Biogen? Or in the pharmaceutical business for that matter? Can't you consider the possibility that the answer to both is "no?"
I don't have a problem with my life at the moment so perhaps it's you that has to move on.

 

[Patient1]

As the person who re-starts these angry rants every time, you're hardly in a position to criticize anyone. You are the one who starts these threads every time and simply can't stop. Everyone else is just responding and calling you out as the resentful guy you are.

As far as Tysabri is conerned, you've been out-voted 56,000 to 1. And yet you continue to whine and resent people doing well. Pretty pathetic.

You are absolutely correct. There are 56,000 patients out there taking Tysabri. There were 1700 new patients beginning to take Tysabri during the 4Q.

It is helping many, but there is a dark side.

How do you think some patients feel that are in the 24 - 36 month time frame? Their risk of PML more than doubled (something that was not readily known when they started taking the drug). How do you think they feel? What are their options?

Stop taking the drug, reconstitute their immune sytem and start another treatment is an option.

Continue taking the drug knowing their risk has more than doubled since they were first put on the medication is another option.

Either option is not particularly great.

The discomfort of reconstituting the immune is frightening.

Continue taking the drug and knowing there is a >1/500 chance of developing PML and if that happens a 4/100 chance of dying.

Go to an MS website and read the concerns. Most know they started taking this drug with the thought that there risk was 1/1000. Most accept that risk. Most accept that their choice to take Tysabri knowing that their risk has doubled. However, even though there is acceptance, they can't help but feel somewhat screwed.

But this is irrelevent to your arguments. You have no desire to understand how patients truly feel. You claim to be helping patients by selling Tysabri, and you certainly are, there is no question. It is just your indifference to the the flip side of your argument that astounds me.

Just because 56000 people are taking the drug, doesn't mean this is the end all and be all of treatment. The 1700 new patients likely signed on because nothing else has worked and they are now somewhat depressed and desperate about their health status.

Yes patients understand the risk all too well.

Many on this site keep saying that this is no place for patients. I beg to differ. Perhaps you should venture to an MS site and see how patients feel. Maybe you may understand that there are always two sides to an argument and you may come to realize there are real people, frightened people, behind these statistics, not just 56000 people taking a drug.

 

[Anonymous]

You are absolutely correct. There are 56,000 patients out there taking Tysabri. There were 1700 new patients beginning to take Tysabri during the 4Q.

It is helping many, but there is a dark side.

How do you think some patients feel that are in the 24 - 36 month time frame? Their risk of PML more than doubled (something that was not readily known when they started taking the drug). How do you think they feel? What are their options?

Stop taking the drug, reconstitute their immune sytem and start another treatment is an option.

Continue taking the drug knowing their risk has more than doubled since they were first put on the medication is another option.

Either option is not particularly great.

The discomfort of reconstituting the immune is frightening.

Continue taking the drug and knowing there is a >1/500 chance of developing PML and if that happens a 4/100 chance of dying.

Go to an MS website and read the concerns. Most know they started taking this drug with the thought that there risk was 1/1000. Most accept that risk. Most accept that their choice to take Tysabri knowing that their risk has doubled. However, even though there is acceptance, they can't help but feel somewhat screwed.

But this is irrelevent to your arguments. You have no desire to understand how patients truly feel. You claim to be helping patients by selling Tysabri, and you certainly are, there is no question. It is just your indifference to the the flip side of your argument that astounds me.

Just because 56000 people are taking the drug, doesn't mean this is the end all and be all of treatment. The 1700 new patients likely signed on because nothing else has worked and they are now somewhat depressed and desperate about their health status.

Yes patients understand the risk all too well.

Many on this site keep saying that this is no place for patients. I beg to differ. Perhaps you should venture to an MS site and see how patients feel. Maybe you may understand that there are always two sides to an argument and you may come to realize there are real people, frightened people, behind these statistics, not just 56000 people taking a drug.

Who ever said Tysabri is the end all and be all?

And what happened to your rant about how these threads are offensive to patients? Don't see you directing that complaint toward the guy who keeps starting them.

Finally, what exactly do you recommend? You don't think people at Biogen would love to solve for PML if they could? You don't think efforts are under way?

If the people trying to treat the disease aren't doing it right, instead of judging and criticizing from the sidelines, why don't you come show how it's done? Why don't you provide the solution to PML or a better treatment?

Oh, that's right. You can't. So, why don't you cut some slack to the people trying to do so? Better yet, show a little appreciation.

 

[Anonymous]

Finally, what exactly do you recommend? You don't think people at Biogen would love to solve for PML if they could? You don't think efforts are under way?

You think that Biogen would spend one penny on solving the PML problem if it wasn't related to Tysabri and how to increase its revenue? It's all about the money.

If the people trying to treat the disease aren't doing it right, instead of judging and criticizing from the sidelines, why don't you come show how it's done? Why don't you provide the solution to PML or a better treatment?

Are you serious with that kind of statement to Patient 1? I don't want to speak for him but I think you've missed his entire point.

Oh, that's right. You can't. So, why don't you cut some slack to the people trying to do so? Better yet, show a little appreciation.

Oh, PLEASE!!!!

 

[Anonymous]

You think that Biogen would spend one penny on solving the PML problem if it wasn't related to Tysabri and how to increase its revenue? It's all about the money.

Are you serious with that kind of statement to Patient 1? I don't want to speak for him but I think you've missed his entire point.

Oh, PLEASE!!!!

Money or not, the bottom line is that the result should help people.

What are you doing to help people? Bitching.

Am I serious about that statement? No. It's an irrationale statement in response to irrationale criticism.

 

[Anonymous]

Money or not, the bottom line is that the result should help people.

So I take it that Biogen's interest in helping people who get PML from using Tysabri has little to do with compassion but only in protecting their revenue source.

What are you doing to help people? Bitching.

Guess you haven't read any of the other threads on this board when it comes to several Biogen employees' mode of communication!!

Am I serious about that statement? No. It's an irrationale statement in response to irrationale criticism.

Fits right in with most posts on this thread, doesn't it.

 

[Patient1]

Who ever said Tysabri is the end all and be all?

And what happened to your rant about how these threads are offensive to patients? Don't see you directing that complaint toward the guy who keeps starting them.

Finally, what exactly do you recommend? You don't think people at Biogen would love to solve for PML if they could? You don't think efforts are under way?

If the people trying to treat the disease aren't doing it right, instead of judging and criticizing from the sidelines, why don't you come show how it's done? Why don't you provide the solution to PML or a better treatment?

Oh, that's right. You can't. So, why don't you cut some slack to the people trying to do so? Better yet, show a little appreciation.

You write as if Tysabri is the end all and be all - merely an observation. Since you take so many liberties interpreting (incorrectly I may add) what people write, I thought I'd return the favor.

I am providing patients' perspective. The fact that you either dismiss it or ignore it so easily speaks volumes. It may not be disrespect, but it certainly is both disregard and offensive.

If you did read my "rants" (which by-the-way or no where as lengthy and pointed as yours) you would read that I criticize both of you. But it seems it is all about you and what you interpret. You call me irrational in another post, well I call you Mr. Borderline Personality Disorder. Believe it or not, it isn't all about you.

Since I can read, I am aware that Biogen is trying to identify and streamline the odds for a patient to develop PML. It is of course directed towards increased revenue rather than towards humanity, but hey, I appreciate that since I am a major investor in many different biotechs and pharma's. I am a true believer in capitalism.

I cannot find one statement that I made that judges and criticizes anyone working on the advancement for treatment and possibly cure for MS or any other disease that matters. There are many brilliant minds out there and I respect them for their efforts.

Where the notion comes that I don't appreciate is another statement that amazes me. I do not perhaps appreciate you because you make such horrific broad-based and inaccurate assumptions that borderline on paranoia. It is a little frightening actually. Tell me do you have trouble in relationships?

I also have no intention of cutting you some slack because your attitude as conveyed through your words indicate you cut yourself enough slack all ready.

 

[Anonymous]

You write as if Tysabri is the end all and be all - merely an observation. Since you take so many liberties interpreting (incorrectly I may add) what people write, I thought I'd return the favor.

I am providing patients' perspective. The fact that you either dismiss it or ignore it so easily speaks volumes. It may not be disrespect, but it certainly is both disregard and offensive.

If you did read my "rants" (which by-the-way or no where as lengthy and pointed as yours) you would read that I criticize both of you. But it seems it is all about you and what you interpret. You call me irrational in another post, well I call you Mr. Borderline Personality Disorder. Believe it or not, it isn't all about you.

Since I can read, I am aware that Biogen is trying to identify and streamline the odds for a patient to develop PML. It is of course directed towards increased revenue rather than towards humanity, but hey, I appreciate that since I am a major investor in many different biotechs and pharma's. I am a true believer in capitalism.

I cannot find one statement that I made that judges and criticizes anyone working on the advancement for treatment and possibly cure for MS or any other disease that matters. There are many brilliant minds out there and I respect them for their efforts.

Where the notion comes that I don't appreciate is another statement that amazes me. I do not perhaps appreciate you because you make such horrific broad-based and inaccurate assumptions that borderline on paranoia. It is a little frightening actually. Tell me do you have trouble in relationships?

I also have no intention of cutting you some slack because your attitude as conveyed through your words indicate you cut yourself enough slack all ready.

Wow. You really are insane.

 

[Patient1]

Wow. You really are insane.

Wow. I may be insane, but you are both Borderline Personality and Paranoid Delusional.

Oops! That means you are also insane. Why don't we just call it even and move on.

 

[Anonymous]

Wow. I may be insane, but you are both Borderline Personality and Paranoid Delusional.

Oops! That means you are also insane. Why don't we just call it even and move on.

The last time "Patient1" talked about moving on, she claimed she had "better things to do" and was departing.

...That was about a week before she returned to post some additional paranoia.

Has anyone figured out exactly what her problem is?

 

[Anonymous]

The last time "Patient1" talked about moving on, she claimed she had "better things to do" and was departing.

...That was about a week before she returned to post some additional paranoia.

Has anyone figured out exactly what her problem is?

There's this old saying about glass houses and stones....

Perhaps you should think about that

 

[Anonymous]

The last time "Patient1" talked about moving on, she claimed she had "better things to do" and was departing.

...That was about a week before she returned to post some additional paranoia.

Has anyone figured out exactly what her problem is?

I have to say it is nice once in a while to sit back and watch others debate their positions.

Like I have said before, you equate people who express a different opinion as "paranoia", "ranting" etc. Although I don't agree with everything that Patient 1 writes, at least I don't resort to the kind of name calling that you do. You have done the same with me. You just don't get it, do you? There are other opinions out there as there will always be but you find it necessary to trash anyone who disagress with you. You are indeed, a sick person...get some help.

 

[Anonymous]

I have to say it is nice once in a while to sit back and watch others debate their positions.

Like I have said before, you equate people who express a different opinion as "paranoia", "ranting" etc. Although I don't agree with everything that Patient 1 writes, at least I don't resort to the kind of name calling that you do. You have done the same with me. You just don't get it, do you? There are other opinions out there as there will always be but you find it necessary to trash anyone who disagress with you. You are indeed, a sick person...get some help.

Sick person? Seems like that cliche about stones and glass houses would apply right there.

All is see is personal grudges, sour grapes and complaining on a Biogen thread from people who aren't at Biogen. I'd say it's clear who has the problem.

 

[Anonymous]

Sick person? Seems like that cliche about stones and glass houses would apply right there.

All is see is personal grudges, sour grapes and complaining on a Biogen thread from people who aren't at Biogen. I'd say it's clear who has the problem.

You have that opinion because you have kept your head in the sand for a very long time. You simply can't stand people who don't agree with you and that is quite evident. Patient1 is quite correct when he mentions you need help. Get some quickly, you really need it.