PML cases now reach 82!

[Anonymous]

Keep talking to your imaginary friends and using whatever slams you like.

We know where you're coming from now.

Did someone say something?

 

[Anonymous]

Let's just hope the moderator will pull this inane and stupid thread well before it reaches nearly 800 posts like the previous inane and stupid thread.

 

[Anonymous]

Must give thread a score of "1" -

 

[Anonymous]

It'll die a slow death, with him trying to prod people into responding. Same as with his last PML thread. Thankfully, we at least know what he's about now and can discount whatever he says.

 

[Anonymous]

It'll die a slow death, with him trying to prod people into responding. Same as with his last PML thread. Thankfully, we at least know what he's about now and can discount whatever he says.

This thread wasn't started by me but it certainly has brought out the same moron Sunshine who pretends to be everyone but himself.

And I guess the 82 PML cases (continue to rise every month) is something that I made up and obviously should be discounted.

 

[Anonymous]

That's OK. We understand.

 

[Anonymous]

It seems that NONE of you on this board REALLY understand what the PML number means. It's not the total number of PML patients that matter it's the percentage of patients who get PML that matter. As NEW patients continue to take the medication the total number of patients will continue to rise due to the piece of the pie (patients taking the medication) is getting bigger. As long as the percentage of patients getting PML is in line with the updated PI HCPs know what to expect amd all should be ok (for the most part). When the PERCENTAGE of patients getting PML begin to consistently outpace what is listed in the PI that's when this company is in trouble.

BTW - I dont work for Biogen or any competitior.

 

[Anonymous]

It seems that NONE of you on this board REALLY understand what the PML number means. It's not the total number of PML patients that matter it's the percentage of patients who get PML that matter. As NEW patients continue to take the medication the total number of patients will continue to rise due to the piece of the pie (patients taking the medication) is getting bigger. As long as the percentage of patients getting PML is in line with the updated PI HCPs know what to expect amd all should be ok (for the most part). When the PERCENTAGE of patients getting PML begin to consistently outpace what is listed in the PI that's when this company is in trouble.

BTW - I dont work for Biogen or any competitior.

What you say is true. What IS important is the risk ratio which is expressed in the number of patients per thousand taking Tysabri that end up contracting PML. I guess that's just another way of stating the percentage factor you mentioned.

Initially, Biogen told us the risk ratio was about 1:1000. That's what the label stated. But after two years additional data got collected and the ratio in the 2-3 year usage range is now about 1:500. That is a big concern because expressed in layman's terms, the risk had almost doubled.

There really isn't much data yet beyond the 3 year usage group so we don't know yet what that risk will be.

Biogen has been working feverishly to come up with a JC virus test that will indicate whether a MS patient tests positive or negative for the virus. The thinking is if the patient tests positive, then they will not be advised to use Tysabri. If they test negative, then they should be OK. But one group of researchers has stated that testing negative for the JC virus doesn't guarantee that you won't get it after taking an immune system altering drug like Tysabri. So I'm not really sure where that leaves the testing plan at the moment.

 

[Anonymous]

It seems that NONE of you on this board REALLY understand what the PML number means. It's not the total number of PML patients that matter it's the percentage of patients who get PML that matter. As NEW patients continue to take the medication the total number of patients will continue to rise due to the piece of the pie (patients taking the medication) is getting bigger. As long as the percentage of patients getting PML is in line with the updated PI HCPs know what to expect amd all should be ok (for the most part). When the PERCENTAGE of patients getting PML begin to consistently outpace what is listed in the PI that's when this company is in trouble.

BTW - I dont work for Biogen or any competitior.

Unfortunately, yes they do understand what the PML number means. It is preferred to gloss over it by most. It actually is a little more than 1:500 in the 2-3 year category.

It is going to be difficult to get data beyond the 3 year mark because most patients are afraid and take a break. Then they have to reconstitute their immune system. Not a fun process.

To me it seems a little too much trouble for the possible reward of only 1-2 years of remission. Some patients actually do worse on Tysabri or no better than any other drug.

A testing program for the PML virus will not likely help much because there are no guarantees. Also, there is little information about sustaining an individual with a monoclonal antibody for so many years. If there are a number of brave souls that decide to stay on the drug for an extended period of time, there will likely be fallout from a supressing the immune system for a sustained amount of time.

 

[Anonymous]

describe to me the worst case physical presentation of an ms patient that you have seen. were they smiling on the outside and crying inside? how did their spouse/family look? everybody has a choice to make- but at least an effective choice is at hand. you put a value on the risk/reward. god knows we are only given so much time to live. live it as you would. bless these patients and be thankful for your own health.

 

[Anonymous]

describe to me the worst case physical presentation of an ms patient that you have seen. were they smiling on the outside and crying inside? how did their spouse/family look? everybody has a choice to make- but at least an effective choice is at hand. you put a value on the risk/reward. god knows we are only given so much time to live. live it as you would. bless these patients and be thankful for your own health.

Those who have MS or have a spouse who has the disease, know very well the devastation that it causes. They also know that after decades of research a cause and certainly nothing close to a cure is available. Add this to the situation and it's no wonder the amount of frustration is so high.

While the treatment of symptoms has improved over the years, there has been very little progress made in stopping the progression of the disease. Since pretty much all of the research has been based on the autoimmune theory (which BTW has never been proven), all of the currently approved meds play with with the patient's immune system. The results...some see improvement, some remain the same and others become worse. That's been the situation for these drugs since the interferons became available in the early 90's.

Yes, Tysabri has shown better numbers over placebo and the ABCR drugs, but it also has added a risk factor that didn't exist before. I also feel that this risk has been overly minimized by Biogen but that is an opinion and I'll leave it at that. Making a decision to use any of these medications or taking nothing at all poses quite the task for the patient. That, of course, just adds one more level of stress to an already bad situation.

 

[Anonymous]

Making a decision to use any of these medications or taking nothing at all poses quite the task for the patient. That, of course, just adds one more level of stress to an already bad situation.

That's why no one uses any of these drugs. People shouldn't be allowed to create medications because they just add stress.

 

[Anonymous]

That's why no one uses any of these drugs. People shouldn't be allowed to create medications because they just add stress.

Although I am not a fan of these drugs I am going to strongly disagree with you when you say that "no one uses any of these drugs." Just the opposite is true. I think that I read not too long ago that about 50% of MS patients use some kind of approved medication. I could be wrong on that percentage but I know that a lot of patients do use one of the approved medications.

In most cases, it's the patient's neurologist who recommends one of the drugs. A good neuro will provide as much info as possible to the patient and then it will be up to him/her to decide what action to take.

As for these companies not being allowed to create these medications....well....there's no sense in commenting on that statement. No answer would likely be acceptable to you.

 

[Anonymous]

describe to me the worst case physical presentation of an ms patient that you have seen. were they smiling on the outside and crying inside? how did their spouse/family look? everybody has a choice to make- but at least an effective choice is at hand. you put a value on the risk/reward. god knows we are only given so much time to live. live it as you would. bless these patients and be thankful for your own health.

Worst case physical presentation of an MS patient that I've seen:

Deceased from an untreatable infection because immune system was drastically supressed - the body shut down

 

[Anonymous]

Worst case physical presentation of an MS patient that I've seen:

Deceased from an untreatable infection because immune system was drastically supressed - the body shut down

The momentum sure is waning. It sure must burn you up how your inflammatory posts are generating less and less interest. Love watching them languish there with hardly a response. Keep trying, though. Whatcha gonna do when it takes a week to get even one person to reply to you? At least your fantasy video games will always be there for you.

 

[Anonymous]

The momentum sure is waning. It sure must burn you up how your inflammatory posts are generating less and less interest. Love watching them languish there with hardly a response. Keep trying, though. Whatcha gonna do when it takes a week to get even one person to reply to you? At least your fantasy video games will always be there for you.

Sunshine, you really are an absolute jerk, aren't you? Those posts that you think I am making up are coming from other readers. I know that is far beyond your comprehension to believe that and you insist on continuing to write your typical nasty messages. You can't stand the fact that there is some communication taking place here where opinions differ but readers don't find it necessary to reply like you always do. Do us all a favor and disappear again!

 

[Anonymous]

Sunshine, you really are an absolute jerk, aren't you? Those posts that you think I am making up are coming from other readers. I know that is far beyond your comprehension to believe that and you insist on continuing to write your typical nasty messages. You can't stand the fact that there is some communication taking place here where opinions differ but readers don't find it necessary to reply like you always do. Do us all a favor and disappear again!

I won't stoop to your level by calling you little names. I can use big boy words.

For someone who claims that post isn't about him, you sure jumped quickly to respond to it. If you're responding, you must be the person in question.

Why don't you do us a favor...and disappear for the first time. You can take your imaginary friend Sunshine with you.

Spyglass sure made you disappear nicely, didn't it. Now, you shall spend 5 years taking your anonymous revenge on an internet chat board. Who cares about MS patients, physicians and employees? You get 'em, tiger. You're a winner!

 

[Anonymous]

The momentum sure is waning. It sure must burn you up how your inflammatory posts are generating less and less interest. Love watching them languish there with hardly a response. Keep trying, though. Whatcha gonna do when it takes a week to get even one person to reply to you? At least your fantasy video games will always be there for you.

First, why are you bothering to respond if this is your opinion.

Second, I have no clue who you are referring to.

Third, my post was not inflammatory, it was fact. A question was asked, and I answered.

For you information you heartless moron, I was referring to my brother-in-law that had MS and passed away at the age of 57 due to an infection that he simply could not fight. His immune system was significantly supressed. They tried antibiotic after antibiotic with no success until he passed away.

Perhaps you should think before you make some broad-based idiotic assumption in a post.

 

[Anonymous]

I won't stoop to your level by calling you little names. I can use big boy words.

For someone who claims that post isn't about him, you sure jumped quickly to respond to it. If you're responding, you must be the person in question.

Why don't you do us a favor...and disappear for the first time. You can take your imaginary friend Sunshine with you.

Spyglass sure made you disappear nicely, didn't it. Now, you shall spend 5 years taking your anonymous revenge on an internet chat board. Who cares about MS patients, physicians and employees? You get 'em, tiger. You're a winner!

Before you make another assumption, I am the poster with the 57 year old brother-in-law with MS that passed away.

Perhaps you can use "big boy words" and not resort to name calling, but in the same breath you are quite ignorant and cruel.

And if anyone doesn't care about MS patients, it certainly is you. Grow up and get a life and if you don't want whomever you are addressing to come back - why don't you stop posting. Now there's an idea.

 

[Anonymous]

Before you make another assumption, I am the poster with the 57 year old brother-in-law with MS that passed away.

Perhaps you can use "big boy words" and not resort to name calling, but in the same breath you are quite ignorant and cruel.

And if anyone doesn't care about MS patients, it certainly is you. Grow up and get a life and if you don't want whomever you are addressing to come back - why don't you stop posting. Now there's an idea.

When you play make believe, you need to also write one of your usual nasty replies along with it. Everyone knows you don't go for a day without posting.

It's OK. We know the back story now.