This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi
http://www.ehealthme.com/ds/tysabri/death
Regards
Rici

I especially liked:

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

How can it be that this is still prescribed???

Ahh, 30000$ per year per patient.....logical

It's more like $15,000 to $20,000 per month!

daily-life-f35/topic21322.html#p201655

I just had a considerable reduction in my lesion load after being on tysabri for four months. I'd consider taking it again even though I've been jc positive the entire time. One suggestion for those considering it is that you do some research about the rebound effect. My neurologist didn't mention it when I started and I'm just glad I don't have to wait a long time to go on the next therapy and I hope in the short meanwhile the lesions or symptoms don't come back w/ a vengeance.

Here's a helpful website I've found that posts studies, although not all articles are accessible to non-professionals but summaries are posted. You can find a wide range of topics.

http://multiple-sclerosis-research.blog ... chive.html

Ultimately it's a personal decision and we should all respect the choices each individual makes.

how come the media never talks about drug deaths but they always report any negative news regarding ccsvi.

ehealthme.com is a very important website.
While the pharma industry is slow to provide information on side effects from drugs once they are marketed, this site monitors FDA information and gets the info out there.

I was shocked when I saw the number of deaths reported to ehealthme with Tysabri use as being many times higher than the number reported to the public by Biogen --at 665 deaths. I was also surprised to see the number of people reporting side effects at over 90,000.
http://www.ehealthme.com/ds/tysabri/death

I first wrote about the ehealthme.com numbers for Tysabri use here:
https://www.facebook.com/notes/ccsvi-in ... 1616067211

Another important thing to understand is that the inventor of Tysabri was very vocal about asking to have the FDA remove Tysabri---and he was asked by Biogen to stop talking about his concerns.

http://news.stanford.edu/news/2005/marc ... 30905.html
http://www.nytimes.com/2005/03/01/busin ... .html?_r=0

He is still making presentations on the problem with Tysabri, albeit no longer to the press. He is concerned that the JCV reactiviation process did not happen in the EAE model of the drug, and they had no idea that it could happen so easily and create PML in humans, and that it would take 2 years of use in humans for this problem to arise--he calls this situation "a massive failure." Here is a recent presentation from Dr. Steinman on Tysabri in 2012:
http://www.iom.edu/~/media/March%2028-2 ... einman.pdf

Yes, we should all respect those who choose to take this medication, they have every right to request it --but because it is now being prescribed as a first line medication to newly diagnosed and those who do not have all the facts, I feel it is imperative to get this info out there. Because if the prescribing neuros don't know it, and the patients don't know it, they are not getting the complete picture before beginning treatment. And that's what Dr. Steinman was warning against.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Joan,
Did you mention in the past that the number of lesions is not indicative of disease progression, disability progression?
Is Tysabri supposed to slow disease progression, lesion formation, or disability progression?

hi dlynn...
there's more and more research looking at MS as a disease of neurodegeneration and atrophy of the gray matter, particularly the thalamus. This research is finding a more direct connection of brain atrophy to progression and disability, as opposed to white matter lesion load or relapses.
general-discussion-f1/topic19418-15.html

That said, Biogen is currently paying for research at BNAC to find out if Tysabri is slowing loss of gray matter or actually slowing disability:

http://www.bnac.net/?page_id=359

Pharma knows, it's not just about white matter lesions and relapses. But they won't discuss that until they have a means to deal with gray matter loss.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thanks cheer, for the links and all your time and dedication, it's greatly appreciated.

Because angioplasty is not an approved treatment for MS. The link between MS and CCSVI is not proven. To my knowledge, so far 7 people died as a consequence of angioplasty, while much fewer people were treated by angioplasty than by Tysabri. So the death rate is even worse for angioplasty than for Tysabri. Also at least, it is proven that Tysabri benefited many MS patients. To my knowledge neurologists have not verified any improvements of angioplasty so far.

Media always do hypes. At first, they declared angioplasty as a cure for MS. Too far from reality.

I hope one day we will get closer to curing MS, until then we have to live with those solutions what we got. It is your choice that you take a drug or not.

The statistics supplied by the ehealthme site are almost useless. They don't go into cause of death, which is the key to the matter. We know that there have been roughly 360 patient deaths attributed to PML in people taking Tysabri. The 665 number includes these, but apparently about 300 more deaths from who knows what reason? No indication of what these "side effects" might be is given whatsoever. Certainly there may be infections, cancers, etc., but it's impossible to know if these "side effects" are actually attributable to Tysabri or to the vicissitudes of human life.

Not sure what the mortality rate would be given a random sample of 90,000 people followed for 5+ years, but I am sure the deaths would number In the dozens, if not hundreds. One must never forget that life is terminal disease.

A little critical thinking goes along way, folks…

I'm no fan of big Pharma, but the fact is that Tysabri has dramatically increased the quality of life for a majority of patients taking it. Not that the drug is without its problems, as the PML threat is quite troubling. But careful patient monitoring for JC virus status seems to be helping the situation, and the most recent studies do seem to indicate that the drug may even limit disease progression.

We definitely need better therapies, but blindly using numbers like the ones provided by ehealthme does a disservice to both sides of the argument. Without specifics, the numbers are meaningless…

Here's a very nice presentation on the PML risk associated with T.
http://www.slideshare.net/gavingiovanno ... -june-2013

_________________
Marc
www.wheelchairkamikaze.com