Tysabri: among them, 665 people have Death.

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Tysabri: among them, 665 people have Death.

Postby Rici » Thu May 30, 2013 10:08 am

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Re: Tysabri: among them, 665 people have Death.

Postby 1eye » Fri May 31, 2013 12:20 pm

I especially liked:
Severity of Death when taking Tysabri ** :
n/a
How people recovered from Death ** :
n/a
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Re: Tysabri: among them, 665 people have Death.

Postby Robnl » Sat Jun 01, 2013 6:38 am

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

Ahh, 30000$ per year per patient.....logical :twisted:
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Re: Tysabri: among them, 665 people have Death.

Postby NHE » Sat Jun 01, 2013 12:30 pm

Robnl wrote:How can it be that this is still prescribed???

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


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

daily-life-f35/topic21322.html#p201655
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Re: Tysabri: among them, 665 people have Death.

Postby sardi » Sun Jun 02, 2013 6:45 am

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.
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Re: Tysabri: among them, 665 people have Death.

Postby erinc14 » Sun Jun 02, 2013 7:44 am

how come the media never talks about drug deaths but they always report any negative news regarding ccsvi.
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Re: Tysabri: among them, 665 people have Death.

Postby cheerleader » Sun Jun 02, 2013 4:53 pm

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.
Dr. Steinman said he had expressed his apprehensions about the drug in speeches and in an article in the journal Science in July and had been asked by Biogen executives to tone down criticism of the drug.

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.
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Re: Tysabri: among them, 665 people have Death.

Postby dlynn » Mon Jun 03, 2013 3:43 pm

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?
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Re: Tysabri: among them, 665 people have Death.

Postby cheerleader » Mon Jun 03, 2013 6:11 pm

dlynn wrote: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:
A prospective, observational, single-blinded, longitudinal study of natalizumab effect on brain atrophy and disability in multiple sclerosis patients over 5 years.
Role: R. Zivadinov, PI
Agency: Biogen Idec, Inc.
Aim: To define the effect of the number of natalizumab cycles on development of brain atrophy and progression of disability in originally treated patients with natalizumab in relapsing multiple sclerosis.
Period: May 2012 –December 2013

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.
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Re: Tysabri: among them, 665 people have Death.

Postby dlynn » Tue Jun 04, 2013 5:11 am

Thanks cheer, for the links and all your time and dedication, it's greatly appreciated.
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Re: Tysabri: among them, 665 people have Death.

Postby Gogo » Tue Jun 04, 2013 8:21 am

erinc14 wrote:how come the media never talks about drug deaths but they always report any negative news regarding ccsvi.


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.
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Re: Tysabri: among them, 665 people have Death.

Postby marcstck » Sun Jun 16, 2013 4:34 pm

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
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Re: Tysabri: among them, 665 people have Death.

Postby Dovechick » Sat Jul 20, 2013 6:35 am

Marc, thank you for the note of caution about these figures, the ehealthme site does not quote it's sources and trying to follow links to other pages, leads nowhere. I am more enclined to feel confident about the figures available here: http://chefarztfrau.de/?page_id=716 . They are bad enough...
Last edited by Dovechick on Thu Jul 25, 2013 12:00 am, edited 1 time in total.
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Re: Tysabri: among them, 665 people have Death.

Postby centenarian100 » Wed Jul 24, 2013 11:08 am

marcstck wrote: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.



You make a good point, but I think that the trend will be to avoid using tysabri in JCV+ patients, especially were more and more high-efficacy disease modifying therapies being available.
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