This Is MS Multiple Sclerosis Knowledge & Support Community

I find it amusing that you try to play word games with my posts Harry, because you're just not very good at it.

Dr. Lawrence Steinman, one of the inventors of Tysabri, has said on more than one occasion that this drug was going to cause problems such as PML... Other researchers also stated the drug was marketed too quickly before any kind of long term safety data was completed. Would you call their comments "defaming" as well?

You try to shift the spotlight off the quote I made reference to by throwing in someone else's statement....however, I was not referring to anyone else's remarks other than the person who made this crappy inuendo:

I find it interesting that Biogen has teamed up with a pharma company to look for a treatment for PML. Wondering if they expect a number of cases to show up in MS patients who use Tysabri.

[emphasis added in bold].

If you can't see the crappy innuendo implied by this poster, who shall remain nameless so as not to embarass him further, then you are more over the edge than I originally suspected.

Biogen made a total mess of introducing the drug for MS patients and that is the main reason that you are finding it an absolute mess in trying to get approved to use it.

I am no great fan of Biogen, but I am of Tysabri, and I am sick of the lies, mis-statements, false innuendos, and mis-truths thrown around to satisfy some perveted revenge upon a drug that offers hope to so many suffering MS patients.

The docs and clinics that will eventually use it have to cover every possible angle to prevent any possible legal action against them

Further, if you knew anything about the TOUCH program enrollment forms (which you obviously don't), you wouldn't make such an absolutely ludicrous statement.

At the same time they are going after a PML solution

Geeeeeee, ya think it could be to protect their own drug Rituxan? Duuh.

It may be better to concentrate your energy on getting approved for Tysabri as opposed to worrying what I say about Biogen.

I couldn't care less what you say about Biogen, and what I do with my energy is my business, and certainly none of yours.

In fact, take your own advice and concentrate on helping your wife who has MS as opposed to spreading FUD about Tysabri and/or telling me what I should/should not be doing.

Good evening to you.

msladyinca wrote:I find it amusing that you try to play word games with my posts Harry, because you're just not very good at it.

Well Lauren, I believe it was you who started the word games with your comments about my opinion.

You try to shift the spotlight off the quote I made reference to by throwing in someone else's statement....however, I was not referring to anyone else's remarks other than the person who made this crappy inuendo:

Like I said, don't expect to make that kind of comment without a reply from me!

If you can't see the crappy innuendo implied by this poster, who shall remain nameless so as not to embarass him further, then you are more over the edge than I originally suspected.

Perhaps if you spent more time reading about what many have said about Biogen over the past two years, you would understand their method of operation much better....and it isn't in the interests of MS patients.

I am no great fan of Biogen, but I am of Tysabri, and I am sick of the lies, mis-statements, false innuendos, and mis-truths thrown around to satisfy some perveted revenge upon a drug that offers hope to so many suffering MS patients.

I think you are beyond frustration at trying to get approval to use the drug and it shows in your comments. I too would be frustrated at what you are having to go through as you run into wall after wall of political garbage when it comes to Tysabri.

Further, if you knew anything about the TOUCH program enrollment forms (which you obviously don't), you wouldn't make such an absolutely ludicrous statement.

Look at the other incidents of PML showing up in the use of other drugs which you yourself have pointed out. Do you honestly think that the Touch program would be necessary for Tysabri use if Biogen had done things right in the first place? The FDA has mandated this because of the mess that Biogen created and we are already seeing the hesitancy and difficulties the medical community is creating because of the unknowns with Tysabri.

Geeeeeee, ya think it could be to protect their own drug Rituxan? Duuh.

So why was this done after Tysabri's problems and not earlier for Rituxan?

I couldn't care less what you say about Biogen, and what I do with my energy is my business, and certainly none of yours.

You could have fooled me with all the comments you make about my opinions!!

In fact, take your own advice and concentrate on helping your wife who has MS as opposed to spreading FUD about Tysabri and/or telling me what I should/should not be doing.

Perhaps you should be following your own advice here. I don't need to spread anything about Biogen and Tysabri....the information that I post comes from others out there that are doing that already.

Let's spare the readers here from another Harry/Lauren heavy-weight fight. You have your views...I have mine. They aren't going to change and I somehow doubt the participants on ThisIsMs want to read more of our bantering.

Harry

Well Harry, you missed the point of my posts completely, and your replies to same were off mark as well.

I don't plan on responding to your ridiculous posts any further, with this exception:

I don't need to spread anything about Biogen and Tysabri....the information that I post comes from others out there that are doing that already.

By you repeating falsehoods and mis-statements, including negative innuendos related to Tysabri, I will challenge you with facts, not ludicrous opinions.

Let's spare the readers here from another Harry/Lauren heavy-weight fight. You have your views...I have mine. They aren't going to change and I somehow doubt the participants on ThisIsMs want to read more of our bantering

The choice is yours, Harry..not mine. If you will stop posting false and misleading information and/or negative innuendos re: Tysabri, I'll have no reason to respond to your posts. However, as I indicated above, if you don't, I will challenge you...., and further, I am 99.9% sure the participants and viewers of ThisIsMS would like to know the truth about Tysabri, and not the FUD being spread by your "opinions", or the "opinions" of others you decide to post that suit your purpose, which will lead the participants and viewers of this fantastic forum to the logical conclusion that you have an ulterior motive other than providing support to people suffering with MS.

Good day to you Harry.

Lauren,
You are so awesome. I have stopped reading Harry Z's posts a long time ago. At times he has some interesting points but most of the time what he says makes me want to run out there and jump off a bridge. In his eyes we should all just lie down and die because nothing we have right now is good enough and we will never have anything worth Harry's time. He just does not understand what MS is even though he has been around someone with MS and has been posting on this site for years. I like to see ppl talking about both sides of the story but crushing our hope every chance he gets is ridiculous. Others have asked him not to post here but he does anyway because obviously ppl's feelings don't concern Harry. I just ignore him and don't read his posts. I mean, he just repeats himslef anyway. Trust me you will be lot happier if you don't read them. I am.
NN

Hi Arron, I noticed your post re: PML.

PML has a definitively known cause, and thus potentially obvious routes to explore in treating it. It seems to me that detecting it is the more difficult challenge and would always be an issue

Perhaps I can shed some light on your post (although you do seem well-versed in Tysabri, and the PML issues . The JC Virus, which when active in a person, leads to Progressive Multifocal Leukoencephalophy (PML). It has 2 specific attributes:

1) 70% of the general population (MS or not) have the JC Virus, which remains "dormant" in the kidneys, and is harmless. It only becomes "activated" and is able to leave the kidneys, whereby it enters the bloodstream, and can be then detected through plasma screening/blood test. This is when it leads to PML.

2) PML is most common in highly immune compromised patients as their immune system is not able to fight off the activated JC Virus, leading to PML.

If you think about it, PML will rarely (if ever) appear in a MS patient that is/was on an immunomodulating/immunosuppressant medication, such as one of the ABCR's, IV Solumedrol, oral prednisone, etc., alone...Why you might ask? Because we (MS'ers) already have a highly active immune system to begin with! All those cascading damaging T-cells just multiplying and entering the brain and CNS, having a happy little time destroying our myelin, causing axonal damage/MS symptoms.

Researchers that studied the data on the 3 PML cases that arose in the Tysabri trials found...all 3 patients had compromised immune systems; 2 "MS" patients were given Tysabri in combination with Avonex-an immunomodulator, and 1 was a severely immune compromised Crohn's patient that had been on Azathiorpine (a very strong immunosuppressant that has lasting effects long after discontinued use) for 6 years and also had several brain tumors. Of the 2 combo patients-1 has a confirmed dx of MS, he survived, but also his medical record showed HHV6, a reputed marker for HIV - in which 5% of patients contract PML; the other combo patient, upon autopsy, confirmed she did not have MS.

"(PML), a rare but deadly viral infection of the central nervous system (CNS) associated with immunosuppression. Owing to the effect of natalizumab on central nervous system leukocyte recruitment, the emergence of PML has been attributed to diminished immunosurveillance. The lack of additional opportunistic or CNS infections among natalizumab-treated patients, however, suggests that alternate mechanisms may contribute to the infectious risk.

<shortened url>

A lot to digest on a Sunday, eh? Here is a really cool link for a short video (3 mins I think) that explains how Tysabri works: http://www.mspatientsforchoice.org/videocenter.htm and then click "How Tysabri Works"

Take care now.

You are so awesome

....ha ha ha ha , nah...lol. I'm just armed with the facts, and I will NEVER back down from lies and mis-truths being spread about my drug of choice. I have taken on the pres and CEO of the NMSS just before the FDA AC hearings in March 06 (which I testified before via videotape)...think Mr. so and so is a challenge for me? Ummmmmmmm, nope! ;)

Oh, FYI, NN? I will continue to read his posts...just to check them for accuracy and truth, or for more FUD, lies and mis-statements...If filled with the latter, I think I'll just forward same to my friends at Elan (the ones who discovered Tysabri-formerly known as Antegren) and let them peruse same for "Product Libel".

Have a good one dear.

msladyinca wrote:Well Harry, you missed the point of my posts completely, and your replies to same were off mark as well.

I don't plan on responding to your ridiculous posts any further, with this exception:

Probably a good idea...like I said, I doubt the readers want to read anything more between us.

You have your points of view and I have mine. You think I'm wrong and I think that you are wrong. I got the same comments thrown at me for months before they pulled Tysabri in Feb 2005. All of a sudden those who personally attacked my comments and concerns about Biogen and Tysabri (as well as others who shared my views) back then became silent

Enjoy the rest of your evening.

Harry

sh8un wrote:Lauren,
You are so awesome. I have stopped reading Harry Z's posts a long time ago. At times he has some interesting points

Well, at least you think I have a few interesting points

most of the time what he says makes me want to run out there and jump off a bridge. In his eyes we should all just lie down and die because nothing we have right now is good enough and we will never have anything worth Harry's time. He just does not understand what MS is even though he has been around someone with MS

Geez, if my comments want to make you do that most of the time, what happens when you read some of the other comments by many others on this forum who share some of my views?

You think I don't understand MS.....hmmm.....probably a lot more than you think I do.

I like to see ppl talking about both sides of the story but crushing our hope every chance he gets is ridiculous.

You accuse me of crushing MS patients' hopes!!....I stopped counting the number of times the world of MS medicine has falsely given hope to these same patients over the past 4 decades.

Others have asked him not to post here but he does anyway because obviously ppl's feelings don't concern Harry. I just ignore him and don't read his posts. I mean, he just repeats himslef anyway. Trust me you will be lot happier if you don't read them. I am.
NN

It may just surprise you that I get private messages from some readers here supporting what I say. They do not want to go public with this support because of some of the nasty messages that will get thrown at them by some participants. Pretty sad when you can't post messages because some will personally attack the readers and not just their opinions. Then again, this isn't surprising in an open forum.

Harry

msladyinca wrote:

You are so awesome

....ha ha ha ha , nah...lol. I'm just armed with the facts, and I will NEVER back down from lies and mis-truths being spread about my drug of choice. I have taken on the pres and CEO of the NMSS just before the FDA AC hearings in March 06 (which I testified before via videotape)...think Mr. so and so is a challenge for me? Ummmmmmmm, nope! ;)

Oh great....now we have a crusader who likes conflict!!

I think I'll just forward same to my friends at Elan (the ones who discovered Tysabri-formerly known as Antegren) and let them peruse same for "Product Libel".

Now this is starting to make sense as why you react the way you do...friends at Elan....I should have guessed. And Product Libel??!! Oh, give me a break!

Harry

this thread is no longer a useful discussion and I am locking it.

Also please tone it down and keep it civil... this is a 'family' and though we may disagree from time to time, there is no room for assailing other member's characters no matter how frustrated you may be with each other.

Everyone here wants to see better options for MS therapies, and everyone here wants to see MS become history.