Harry

Then why bother posting anything?

It's unsubstantiated posts like this that get the rumormongers going. If you have something substantial to post then post it...don't post something -- gee I heard...and let it go unsupported. Anyone can do that. I could post that I overheard two neurologists talking about a patient in the doctor's lounge yada yada yada and it would be worthless gossip.

The whole point of the TOUCH program is to track and report PML. If you think for one minute that there has been a case of PML and Tysabri unreported, then I do believe you are WRONG. And that, Harry, is something you can take to the bank and cash. I worked with the FDA and the RiskMAP committee to make sure the tracking procedure works...if you have a problem with the system you should be taking it up with the committee...not making innuendo here.

This post of yours is inflammatory and totally unnecessary, in my opinion. In other words, I disagree with your comments. I can back mine up with names, dates, and reports. Can you? I didn't think so.

Everyone is entitled to their opinion Cheryl.

I can remember when Tysabri was first making the headlines a few years ago and I and a few other people on the net were making similar comments about the drug. I was called some very nasty names for even daring to suggest that there were some possible problems with it. How dare I infer, without documentation, this drug might be dangerous?! Almost daily I was attacked.

So what happens...Tysabri gets pulled from the market because of PML and all the nasty name calling comes to an abrupt halt! And those who had targeted me for months suddenly disappeared from the forums.

Now I know it is hard for Tysabri cheerleaders to hear this kind of concern but do you think that I enjoy stating this kind of information? My concern here is the possibility that many MS patients may end up suffering even more from their disease if what I hear about the drug materializes. Because of my following MS for decades, I have seen far too many people suffer from this disease too often because the drug companies involved with their medications don't tell us the "con" side of them.

In the many years that I have followed MS, I have made a number of contacts in this area and end up getting bits and pieces of information. You say that I am irresponsible for making unproven comments about what I hear but what about the drug companies that simply don't tell us about the very known problems that they keep from the public?

Visit several of the MS websites out there, Cheryl, and you just may read about some of the things that I refer to. You say that my post was inflammatory and unnecessary...don't forget, there are always two sides to every story and I sometimes tell the side that some people don't like to hear.

Harry

For the record:

Harry Z does not have MS

Harry Z was married and his wife had MS. She died. She never took Tysabri.

Harry Z has never had to make a choice as to how he would treat HIS MS.

Harry Z comes in with rumor-mongering, no data, spreading the spew from Biogen's Jim Mullen, someone who has a large stake in seeing Tysabri fail.

Biogen Idec owns AVONEX. Biogen Idec did NOT develop Tysabri.

Elan developed Tysabri. Because they are an Irish drug company, they had to have an American company to partner with during the process of getting Tysabri approved. Biogen jumped at the chance. WHY? Because they saw what it could do. They had something BIG to lose. AVONEX.

Biogen Idec was the company that insisted that a combination trial be run so they could have their pie and eat it too, hence the Tysabri/Avonex debacle.

NO MS PATIENT HAS DIED (IN MORE THAN 20 YEARS IT TOOK TO DEVELOP THIS DRUG) FROM PML.

THERE HAVE BEEN NO CASES OF PML SINCE THE DRUG WAS RETURNED TO MARKET UNDER THE TOUCH PROGRAM.

People with MS will be what drives this drug. No amount of marketing will do it. When someone gets out of their wheelchair and walks for the first time in years, when a mother can run with her children again, when a father gets to walk his daughter down the aisle, when someone can see again, when children no longer have to care for their affected parents, the word spreads further. ++100,000 patients by 2010.

Tysabri works. It may not work for everyone, but it works for me. It works for a lot of other people. After suffering from relapse after relapse, almost quarterly since being diagnosed in 2004, I haven't had a relapse since May 25th, 2007. I have regained my vision, my fatigue has lessened, my spasticity has lessened, I had no new lesions, no enhancing lesions and many of my old lesions were smaller or GONE. I can see a 14 MM LESION shrinking. I had a 12 MM lesion that is gone. My brain looked like a constellation. Now it looks like what you can see in the city, only a few stars in the sky. I fully expect my next MRI will be even better. I have had NO side effects, NO concerns to report and I have NEVER looked back and missed those relapses, that increasing progression that was robbing me of everything I held dear.

No one is forced to take Tysabri. It's a CHOICE. You can inject water if you so choose. Pick your own tool. Don't try to "PROTECT" me from my choice. I'm aware of risk/benefit ratios for each and every choice I make.

I'll take Tysabri, and faithfully send my thank you card every month to Ted Yednock and his team, letting them know that for THIS person with MS, Tysabri works.

I am done with this thread.

RW, I understand your enthusiasm, I really really do, but please do not be too unkind to Harry. I do believe he is just a worry wort and doesn't mean to poo poo your personal medical choice.

Wow, RW! When defensiveness stoops to this level, it is not a pretty sight.

Harry just lost his wife to MS not very long ago, and I think it was totally unnecessary to be insensitive to that in your response. You could make the same point without such low blows, and nothing you said changes the amount of knowledge he has.

Cherie

I didn't see one low blow, only facts.

Harry I appreciate your comment...I honestly do. I understand from where you come.

I have been on the receiving end of those very same comments...the hateful, snide, nasty comments from the those who only wanted the negative put forth about Tysabri. I was challenged with every post I made. Even my motives for testifying were questioned.

I testified at the FDA hearings to bring Tysabri back on the market and then was denied after several appeals by my insurance company b/c I did not meet the criteria under which I helped draft. Pretty ugly. But, bottom line, I still believe in this drug. I sat on the FDA RiskMAP panel last year to review the TOUCH protocol for Tysabri.

Having said all that, I am not a big fan of drug company executives who line their pockets with the profits of patients like us who keep them driving their big cars and live in their big houses.

My only criticism is unsupported comments that are made on forums that are widely read by MS patients that scare them for no reason. As has been said, there are NO documented cases of PML. There are other adverse reactions/events associated with Tysabri that have been reported but to date, NO PML has been associated with any deaths since the re-release of this drug in any MS patient.

Mr. Mullen's comments are irresponsible. Your post only adds flames to the fire. If you have proof to substantiate his article, then by all means, please provide it. Doctors who treat patients on Tysbari are required by law to report these cases. Or even if they suspect a case, there is a plan in place for investigation. That is my point.

I am not on Tysabri. I am not a stockholder in either Biogen or Elan. I have nothing to gain or lose by posting this information. I am an advocate FOR MS Patients and their choice for whatever DMT is best to treat their form of MS.

I am a lab rat for Tovaxin. It's a competitor, hopefully.

I look at the big picture and want more than ever for more treatments and research to be available for all people with MS. But if rumors abound and people are afraid to take medications, what's the point? We might as well just dump them all in an incinerator and have a bonfire....the EPA might have a problem with that, but it would certainly send a clear signal!

I think we are on the same page, Harry...just approaching it differently.

RW has a lot of information about Tysabri that a lot of other people do not have. She made some very good points and clarified some points that some people probably were not aware of.

In my opinion, there were no low blows...just facts.

Tysabri has always been a hot topic no matter what forum it is discussed on...right? Especially between those who do not take it and those who do...that is a given.

This article posted by Mr Mullen is bound to create a whole new can of worms. As I said, I cannot for the life of me understand what would motiviate him to allow that interview...but I think RW made some very good points....

The personal points, especially bringing up the death of Harry's wife (which would obviously be a very sensitive topic to ANYONE who would has just lost a loved one) was absolutely irrelevant and unnecessay. The same points could have been made without these personal digs.

Cherie

this is interesting to me - I know we all have strong opinions about the meds - but it just strikes me as odd that Ty is really so controversial! First off, no one is ever forced onto it. Thus - that being the case -if you have a problem with Ty and this from of tx, well that's all fine and dandy - you don't have to take it. but why the need to poke holes in it or make any comments about it against it - unless it is someone sharing a personal experience with Ty. Now that I'd listen to openly. But at the end of the day, we all need to make our own decisions.

My decision right now is that I hate all of it. My doctor, people at TOUCH, Blue Shield.


~Keri