Tysabri: among them, 665 people have Death.
- 1eye
- Family Elder
- Posts: 3780
- Joined: Wed Mar 17, 2010 3:00 pm
- Location: Kanata, Ontario, Canada
- Contact:
Re: Tysabri: among them, 665 people have Death.
I especially liked:
Severity of Death when taking Tysabri ** :
n/a
How people recovered from Death ** :
n/a
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
Re: Tysabri: among them, 665 people have Death.
How can it be that this is still prescribed???
Ahh, 30000$ per year per patient.....logical
Ahh, 30000$ per year per patient.....logical
Re: Tysabri: among them, 665 people have Death.
It's more like $15,000 to $20,000 per month!Robnl wrote:How can it be that this is still prescribed???
Ahh, 30000$ per year per patient.....logical
http://www.thisisms.com/forum/daily-lif ... ml#p201655
Re: Tysabri: among them, 665 people have Death.
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.
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.
Re: Tysabri: among them, 665 people have Death.
how come the media never talks about drug deaths but they always report any negative news regarding ccsvi.
- cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
Re: Tysabri: among them, 665 people have Death.
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:
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://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
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:
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.htmlDr. 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://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
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Re: Tysabri: among them, 665 people have Death.
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?
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?
- cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
Re: Tysabri: among them, 665 people have Death.
hi dlynn...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?
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.
http://www.thisisms.com/forum/general-d ... 18-15.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=359A 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
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
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Re: Tysabri: among them, 665 people have Death.
Thanks cheer, for the links and all your time and dedication, it's greatly appreciated.
Re: Tysabri: among them, 665 people have Death.
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.erinc14 wrote:how come the media never talks about drug deaths but they always report any negative news regarding ccsvi.
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.
Re: Tysabri: among them, 665 people have Death.
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
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
Re: Tysabri: among them, 665 people have Death.
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 Wed Jul 24, 2013 11:00 pm, edited 1 time in total.
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
-
- Family Elder
- Posts: 504
- Joined: Mon Apr 15, 2013 9:51 am
Re: Tysabri: among them, 665 people have Death.
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.
-
- Similar Topics
- Replies
- Views
- Last post
-
- 0 Replies
- 893 Views
-
Last post by MarkCruise
-
- 1 Replies
- 11785 Views
-
Last post by ElliotB
-
- 0 Replies
- 1257 Views
-
Last post by NHE
-
- 0 Replies
- 1449 Views
-
Last post by NeusFunollet
-
- 0 Replies
- 895 Views
-
Last post by NeusFunollet
-
- 9 Replies
- 14290 Views
-
Last post by ElliotB
-
- 0 Replies
- 2032 Views
-
Last post by NHE
-
- 0 Replies
- 9876 Views
-
Last post by NHE