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The "human interest" side of this whole Tysabri thing is fascinating (and somewhat troubling).

Tysabri was approved for mild or RRMS, not any type of progressive MS (which progressive types don't usually involve inflammation anyway). We have now gotten "indication", not proof yet, but definite "indication" that Tysabri may be a little risky.

Ok, people with mild or RRMS are showing themselves (at least to me) to be extremely more "desperate" than is rational given the type of MS they have. It's like someone screaming to be given chemotherapy for a headache.

This dichotomy is troubling to me, because it indicates that in the future, others may indeed be able to influence people with this disease to succumb to desperation, thereby assuring a profitable financial return (when perhaps their goal isn't really to help people with MS at all. And perhaps hurting more people than they help.)

Although Tysabri was "marketed" with a lot of hype, and in my opinion much more hype than was logical given how much was still unknown, it was never claimed to be a "cure". So why all the desperation on behalf of so many patients? MS does not result in death. It's so rare as to not be worth mentioning. But some of the drugs that people want to literally run to get (even after such a circumstance as this Tysabri thing proved to be) may certainly be a much worse risk than just treating the symptoms of MS and living your life! Amazing! New treatments are coming out all the time. We DO have time on our side.

It almost appears to be some type of "mass hysteria". And it is somewhat concerning to me, as people may be able to be taken advantage of under these conditions.

In my opinion, everyone should remember that there are other options for treatment for MS available. And many options for relief from symptoms.

And I say this, not because I have no idea what MS is like. Everyone knows I certainly do. And I have for over 45 years.

All the best,

Deb

Sorry Deb but I can't agree with you.

RRMS very often converts to SPMS after time. At that point there are no treatments available that will modify the course of the disease. MS is not a headache, it results in permanent disability.

I have RRMS (although not in my opinion mild) and I am shortly to undergo chemotherapy to attempt to halt its progress. I do not consider myself hysterical. I am justifiably very frightened of the consequences of this disease.

I think your post belittles the very real concerns that people have, whatever pattern of the disease they are diagnosed with.

Robin

Hi, Robin!

Well, my apologies if that was how it was taken, as that was not my intent.

My intent was only to attempt to reassure people that "all is not lost".

Deb

EDIT: Plus, maybe I should explain my thoughts a little more clearly. I feel much better about someone taking chemotherapy for MS, than something like Tysabri for MS. That may be why my post could be misunderstood.

In any event, my sole goal was simply to attempt to reassure.

I have to say, Sharon just now said it best in the other thread. (Sharon, my I quote you here?)

I am sixty-one years of age, was dxd with MS in 2003, but I have had symptoms for thirty years. According to the neuro, my MS is mild. I will continue to live my life as I did prior to my diagnosis - enjoying the moment and not living the future. Maybe I would have a different outlook if I had experienced a major exacerbation - but, I'm not going to spend precious time thinking about "what if's".

Enjoy where you are for today - tomorrow you will have new things to work on whether you have MS or not. I agree with a previous post - go to the beach, enjoy a sunset with your wife (or a sunrise ); be thankful for what you can accomplish.

Robin said:

I am justifiably very frightened of the consequences of this disease.

and

RRMS very often converts to SPMS after time.

And Robin, as you can see from two of us right here, it just as often does NOT convert to SPMS after time.

Hang in there!

Deb

Hi Deb

I understand where you are coming from. I just think that it's a great pity that the first new treatment for MS in 8 years has fallen flat on its face. Many people had great hopes for the drug (patients rather than investors!). It's a very sad thing that those hopes have been crushed.

Whilst I personally was hesitant about it because of the way it was rushed through, I have great sympathy for those whose hopes were raised by it.

Yes, there is time, MS burns slowly, but it also tends to strike in what are supposed to be the most productive years of our lives. Whilst a cure may be found in the future it may well come too late for many who have had their careers and personal lives wrecked by MS.

Unfortunately the damage caused is not restricted to physical disability.

Robin

EDIT: Grrrr dontcha just hate it when someone gets a post in whilst you are still typing yours

Maybe I would have a different outlook if I had experienced a major exacerbation

I have had two in the last 5 months.....

Robin,

I agree.

Deb

Deb,

When you advise people with MS to "treat the symptoms and just live your life", I am reminded that each of our experiences with MS is indeed as individual as a fingerprint. One person with RRMS may have years of exacerbations with only mildly dibilitating lasting damage. Another person's RRMS may bring on an attack that leaves a permanent disablity which leads to unemployment, bankruptcy, loss of a relationship, or some other life altering hardship. RRMS and permanent disability are not mutually exclusive.

The NMSS is committed to spreading the message that "MS is the leading cause of disability (leading to the inability to care for their children, make a living, etc.) in young adults". When I read comments like yours I wonder if perhaps the general public is more receptive to that message than some actual MS sufferers who have lost sight of the big picture because the reality of their own situation has been less than hysteria provoking.

Deb, your view on this is very similar to the "Oh, but you look so good" comment that infuriates so many MSers.

It is very clear that we disagree on Tysabri, but I would like to ask you this. If you set aside your opinions about Biogen's corporate greed, lack of ethics, etc. and just assume that they have a drug that can prevent disability in the majority of MS sufferers, but that the treatment carries with it a 10% risk of death (I am completely making up numbers, of course), what is wrong with warning consumers of the risk and letting them make their own decision?

Hi, Denver,

what is wrong with warning consumers of the risk and letting them make their own decision?

Again, I agree with you, also. As you will note in many of my prior posts, that is EXACTLY what I have been advocating and speaking the loudest about.

That the people be "fully informed" of the risks before going ahead. That applies to any situation. Being FULLY informed.

Deb

EDIT: Oh, and Denver? I couldn't have said what you just did in your post any better had I written it myself. Kudos!! (Sincerely.)

OddDuck wrote:Ok, people with mild or RRMS are showing themselves (at least to me) to be extremely more "desperate" than is rational given the type of MS they have. It's like someone screaming to be given chemotherapy for a headache.

I have found observing my response and others to the Tysabri tadoo really quite interesting too. And despite not being anywhere near a whiff of a T infusion (was never due in EU till '07) I still feel let down - more even than on Saturday when Spurs lost 1-0! And angry - I'm quite sure research into MS therapy in general will have been put back by BioGen's seeming rush to market with T - already seen one class action posted that will put some red flags up for the pharma co's. I guess my reaction has been irrational!

I'm told I have RR. My QoL is not significantly hampered by it - as long as I can take regular rest breaks, there's a loo nearby and I can get some PDE5 inhibitors . So why should I want any (more) meds? First my neuro recommends them and suggests that if any benefit is to be had then early adoption is more beneficial - whatever I think of him I should respect that he has some knowledge. And secondly, I just dont know how it will go with me. I met a woman collecting outside the supermarket for the UK MSS she has had RR MS for 38 years, took no CRAB and is still active. Well if I knew that would be the course of things for me too then maybe I wouldnt want anything either! If I last that long I'll be 88 in 2043! Isnt this uncertainty the real bugger of MS!! And so I will reach for almost any tried and tested hope to, at best, now prolong the status quo. And I suspect many others - irrationally or hysterically maybe but explainably - are doing so too.

We could go round the "false hope" debate again, by the way, but Wesley might get cross so we'll let that lie

Good luck with the Campath, Robin. Maybe watch out for the combination therapies though given the T experience.

You know, something suddenly occurred to me.

I have a best friend who from time to time will actually say to me, especially in circumstances similar to this (i.e. she'll start lecturing me or giving me her opinions), she'll suddenly stop and say:

"Oh my GOD! I sound like YOU!!!" And I'm never quite sure if that's a compliment or an insult. Either way, I DIE laughing! (Because what she is saying really, is that we were on the same page after all.)

(I just thought everybody might get a kick out of that.)

All the best,

Deb

Hi, John!!!

Isnt this uncertainty the real bugger of MS!!

Absolutely!

As the Rev always says:

Be well!

Deb

DenverCO wrote:If you set aside your opinions about Biogen's corporate greed, lack of ethics, etc. and just assume that they have a drug that can prevent disability in the majority of MS sufferers, but that the treatment carries with it a 10% risk of death (I am completely making up numbers, of course), what is wrong with warning consumers of the risk and letting them make their own decision?

I agree with this, completely. And the rate is going to be much lower than 10%. The rate of PML was about .004% or so.

Sorry, time to leave the board.

-finn

Daunted wrote:

DenverCO wrote:If you set aside your opinions about Biogen's corporate greed, lack of ethics, etc. and just assume that they have a drug that can prevent disability in the majority of MS sufferers, but that the treatment carries with it a 10% risk of death (I am completely making up numbers, of course), what is wrong with warning consumers of the risk and letting them make their own decision?

I agree with this, completely. And the rate is going to be much lower than 10%. The rate of PML was about .004% or so.

OK, I really gotta ask....How on Earth do you know? How does anybody really know what the rate of PML would have been if patients had been allowed to keep taking it indefinitely?

It takes time to develop PML.

How do you know the rate of serious, even deadly complications from opportunistic infections such as PML wouldn't have eventually topped the 50% or even 90% mark, after another year or so of Tysabri infusions?

Like I said, you can't tell at Intermission how many characters will still be standing by the end of the last act...unless of course you've seen the play before. And in this case, nobody has.

In my opinion, the "hysteria" is justified because anyone diagnosed with MS--regardless of what course the disease may take for them--will have only one opportunity to agressively treat the disease early in its course. In many ways, time is as much of the enemy as the disease when it comes to MS, and it's difficult to get over the feeling that one needs to do something now, before the disease progresses and disability accumulates.

I also believe that the "hysteria" is driven, in part, by descriptions of disease progression, and data presented in connection therewith, formulated before there was a generation of MS paritents treated with CRABS. For as much as we like to crtiticize them, the CRABS do effect the progression of MS, and I think that the statistical description, as well as the popular understanding, of MS does not fully reflect the CRABS effect.

That being said, each individual diagnosed with MS would be remiss not to consider the possibly devistating course of the disease (even the emotional impact of such consideration can be both devistating and life changing), and it is precisely this uncertainty that justifies the "hysteria" with which we respond to the Tysabri debacle.