PML Cases Now Reach 486

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

PML Cases Now Reach 486

Postby HarryZ » Sat Aug 23, 2014 4:50 am

A rather large jump this past month in Tysabri related PML cases...up 11 to a new total of 486. Not known if any additional deaths were involved. Despite all the JCV screening tests, there doesn't appear to be any let up in the number of MS patients getting PML from Tysabri use.

http://chefarztfrau.de/?page_id=716
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Re: PML Cases Now Reach 486

Postby mccpm » Thu Sep 25, 2014 5:11 pm

Hi Harry. I saw your website with the PML numbers for Tysabri patients. Thanks for putting that together. Do you have numbers on JC Virus tested negative patients who got PML? I was told me there were 2 cases in its history but those eventually turned out to be actual positive JCV people in the end. Those seem like pretty good odds but just curious to hear your findings. Overall my question is: Do you know if there has ever been a case of someone getting PML while on the drug who was JCV negative?

I read in the materials that the JCV test is not 100% accurate (3% margin of error). I am JCV negative according to the first test and I am scheduled to start infusions next week. I requested a JCV test every 3 months which my neuro is willing to do.

If anyone else out there reads this I'm curious to hear your opinions on Tysabri for JCV negative people.

Thanks!

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Re: PML Cases Now Reach 486

Postby cheerleader » Tue Mar 31, 2015 12:05 pm

Harry hasn't updated recently--thought it might be a good idea.
The cases of PML continue to grow--- Biogen reports 541
http://chefarztfrau.de/?page_id=716

and ehealthme.com, an independent site is reporting 2,943 people with PML
http://www.ehealthme.com/ds/tysabri/pml

dear mccpm---
you can change from being JC- to JC+.
There have been many more documented cases of people who initially were JC-, then changed to positive before developing PML. That's why it's essential to keep testing.

A longitudinal serological follow-up from the combined AFFIRM and STRATIFY-1 studies showed, however, that only 87% of patients who were anti-JCV antibody negative at baseline remained consistently negative every 6 months over a period of 18 months (53) meaning that nearly 13% could become positive during follow-up.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4283628/

Here's some research I put together for my husband, when his neuro was pushing Tysabri. He brought it to his neuro, and she stopped mentioning Tysabri to him.
https://www.facebook.com/notes/ccsvi-in ... 1616067211

best of luck!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: PML Cases Now Reach 486

Postby centenarian100 » Wed May 18, 2016 11:01 am

cheerleader wrote:Harry hasn't updated recently--thought it might be a good idea.
The cases of PML continue to grow--- Biogen reports 541
http://chefarztfrau.de/?page_id=716

and ehealthme.com, an independent site is reporting 2,943 people with PML
http://www.ehealthme.com/ds/tysabri/pml


I wonder which one is more accurate. Is biogen intentionally suppressing numbers, or does ehealthme.com simply take every report as golden without any kind of verification?

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Re: PML Cases Now Reach 486

Postby HarryZ » Thu May 19, 2016 4:54 pm

I wonder which one is more accurate. Is biogen intentionally suppressing numbers, or does ehealthme.com simply take every report as golden without any kind of verification?

-cent


I am back after a VERY long absence and not by my choice. It is a long story of which I won't bore you with but I am ready to contribute again.

Those who have known me for years know that I am not a fan of Biogen. The numbers that they have supplied us regarding Tysabri, in my opinion, are far from accurate. Any additional case of PML means one thing for them....less sales for an extremely profitable drug so you know that they keep a tight lid on anything negative about them.

I would go with Cheer's links with the numbers of PML cases which are just but one negative aspect of this nasty drug.
Last edited by HarryZ on Sun May 22, 2016 4:51 am, edited 1 time in total.
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Re: PML Cases Now Reach 486

Postby cheerleader » Sat May 21, 2016 5:46 pm

:YMPARTY: HARRY!
I just popped in after months away to see your name! WHOO HOO! Hope you're doing well. You must be a fossil by now, because I'm a geriatric :) Although Jeff is still (thankfully) running me around...now nine years past his MS diagnosis, he makes me mountain bike, hike, work out and travel. No MS progression.

Not to bring the party down--but yes, you're right, the numbers for PML are much higher than Biogen is required to report. And more concerning is the fact that the risk of going from JCV negative to positive was severely underestimated.

The JC virus is very common in the general population, infecting almost 90% of us in childhood. It stays under control and latent because our immune system keeps it in check. This means we have a JC negative status. The virus is able to cross the blood brain barrier where it attacks myelin and destroys brain tissue.

New research shows that the risk of JCV reactivation due to Tysabri use is ten times higher than previously estimated. That not 1%, but 10% of all patients on Tysabri were seen to go from JCV negative status to JCV positive status while taking Tysabri. The drug is apparently what turns people from JC virus negative to positive. This makes sense, if you understand that what Tysabri is doing is holding back immune cells, and rendering them unable to stop a virus from reactivating.
http://nn.neurology.org/content/3/1/e195.full

I write about Tysabri and other MS research on my blog-- because the 20 billion a year MS drug industry pisses me off.
http://ccsviinms.blogspot.com/2016/02/t ... cells.html

take care, and post often,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: PML Cases Now Reach 486

Postby HarryZ » Sun May 22, 2016 4:55 am

Hey Cheer,

Yep, pretty close to fossil status these days :-)

What is also alarming when it comes to PML is that these drug companies continue to pump out new monoclonal antibody MS medications...and we all know what they will do to the immune system!
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