PML Cases now reach 298

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

PML Cases now reach 298

Postby HarryZ » Fri Sep 21, 2012 5:20 am

Sadly, the number of PML cases has jumped to 298 an increase of 14 over the previous month. The total number of deaths associated with this are 63.

http://chefarztfrau.de/?page_id=716
Last edited by HarryZ on Sat Oct 20, 2012 5:15 pm, edited 1 time in total.
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Re: PML Cases now reach 285

Postby cheerleader » Sat Oct 20, 2012 3:49 pm

Harry---you might want to update your header with October 298 PML cases, 63 deaths


As requested, please find attached the October 2012 Tysabri PML update that we made available to physicians:
As of October 3, 2012, there have been 298 PML cases, of which 176 have been in the European Economic Area (EEA), 105 in the US and 17 in rest of world (ROW).
As of October 3, 2012, 63 of the 298 patients with PML have died.
As of October 3, 2012, in 98 natalizumab-treated MS patients who developed PML and for whom serum samples were available 6-187 months prior to the onset of PML. Of these 98 patients:
96 (98%) tested anti-JCV antibody positive at all time points where samples were available for testing;
1 patient (1%) tested anti-JCV antibody negative 9 months prior to PML diagnosis and anti-JCV antibody positive 6.5 months prior to PML diagnosis;
1 patient (1%) tested anti-JCV antibody negative 9 months prior to PML diagnosis; no additional samples were available.

http://www.investorvillage.com/smbd.asp ... d=12213882
Last edited by cheerleader on Sun Oct 21, 2012 6:29 pm, edited 1 time in total.
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Re: PML Cases now reach 285

Postby HarryZ » Sat Oct 20, 2012 5:25 pm

cheerleader wrote:Harry---you might want to update your header with October 298 PML cases, 63 deaths


Hi Cheer,

I acutally started a new thread with the most recent numbers but for some reason ended up posting it in the General Discussion thread. Don't know why because the previous updates were always posted in the Tysabri forum!


It's not going away, and the numbers are not improving due to testing for JC virus. 98% of these patients tested negative for JCV antibody....yet still developed PML.


And it won't go away! This drug is very powerful and dangerous to the immune system and the numbers are going to continue on this trend. Biogen thought by testing for the JC virus and showing negative results, they would entice more docs to put their patients on the drug. I can remember reading a doc saying that this did not guarantee anything when it came to this virus and PML.

I wonder what the risk is now? It had gone up to about 1:500 between 2 and 3 year use but I haven't seen any updated figures as yet.

Harry
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Re: PML Cases now reach 298

Postby stillfighting » Sat Oct 20, 2012 7:12 pm

So tell me why do people say the odd are so slim? like 1 in 1000? Are those good odds to any of you?
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Re: PML Cases now reach 298

Postby HarryZ » Sat Oct 20, 2012 7:43 pm

stillfighting wrote:So tell me why do people say the odd are so slim? like 1 in 1000? Are those good odds to any of you?


The 1:1000 number was one that Biogen gave us when Tysabri started being used after its re-approval. Then, as the patients started reaching post 2 year use, the cases of PML started to climb significantly. The last number I saw was a 1:500 risk under certain conditions and it may be even higher now.

Remember Biogen's public statements: first, Tysabri was a very safe drug...then when PML showed up, it only happened when taken with another DMD..... then if you had taken other immunosuppressive drugs earlier....then if you were positive for the JC virus and were OK if your test was negative...and now we know differently.

You have to remember that Biogen is in business to sell drugs and make the largest profit possible. Those who think that their interest is in the health of MS patients are sadly mistaking. They have one of the best marketing/sales departments going and they ensure that Tysabri and other drugs that they sell bring in as much revenue as they can. If that means twisting the facts a bit, so be it. No conspiracy, no agenda....just hard core business practices.

So are those odds slim? I guess it depends on each person's situation. Some say they will take the chance regardless while others won't touch Tysabri with a 10 foot pole.

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Re: PML Cases now reach 285

Postby NHE » Sat Oct 20, 2012 8:48 pm

cheerleader wrote:It's not going away, and the numbers are not improving due to testing for JC virus. 98% of these patients tested negative for JCV antibody....yet still developed PML.


Doesn't the text you quoted state that 98% were positive?
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Re: PML Cases now reach 285

Postby cheerleader » Sun Oct 21, 2012 6:28 pm

NHE wrote:
cheerleader wrote:It's not going away, and the numbers are not improving due to testing for JC virus. 98% of these patients tested negative for JCV antibody....yet still developed PML.


Doesn't the text you quoted state that 98% were positive?


doh. Confused by double negatives ....will fill, thanks NHE.
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Re: PML Cases now reach 298

Postby stillfighting » Mon Oct 22, 2012 5:05 pm

What may I ask just is the TOUCH program? I have done everything I can do my neuro has all but fired me.
He insist I mean insist I take this drug. He won't allow me to have any conversation about this drug. I ask questions. He said " all drugs have side effects" He said I don't need the anti body test make up my mind. He brought copies of my MRI's into our office visit together and handed them to me. I told him I was no longer comfortable starting this drug under him now!!!!!!!!!!!! I was suppose to start Ty in a week! What program have I been through that is a safeguard?
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Re: PML Cases now reach 298

Postby HarryZ » Mon Oct 22, 2012 6:57 pm

stillfighting wrote:What may I ask just is the TOUCH program? I have done everything I can do my neuro has all but fired me.
He insist I mean insist I take this drug. He won't allow me to have any conversation about this drug. I ask questions. He said " all drugs have side effects" He said I don't need the anti body test make up my mind. He brought copies of my MRI's into our office visit together and handed them to me. I told him I was no longer comfortable starting this drug under him now!!!!!!!!!!!! I was suppose to start Ty in a week! What program have I been through that is a safeguard?


The Touch program is a monitoring program for Tysabri patients to ensure they are followed very closely due to the problems associated with this drug. Here is a link you can read:

http://www.tysabri.com/safety-with-tysabri.xml

Your neuro almost sounds like a "bully"!! I can't believe he says you don't need the JC Virus test. Almost sounds like he gets some kind of monetary compensation for prescribing Tysabri to his patients. You really should consider getting another neuro.

Harry
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Re: PML Cases now reach 298

Postby stillfighting » Mon Oct 22, 2012 7:12 pm

I am trying I he won't be an option much longer any way. He has made it clear he will not script any meds other than Tysabri. Can you believe that! Can YOU really. I can't I really can't, I did not have any one with me to prove what he said. He has 3 other neuro's in the same practice ( they have a policy of not transerring a patient to another neuro)
The other neuros are in the other clinic I changed from. I don't really have any one to change to. I have put in a couple of calls. My next option is about 200 miles away. NOT good, he knows this. I wonder if there is anyway to find out if he gets money from Biogen. I know that Clinic HE IS IN ... has an infusion center. It is not where I was going to get my infusions though. ( my insurance did not pay well on Tysabri) Biogen had to assist on it. He was not set to make anything on ME, that I know of. I do not think at all. I have only seen him once in his office. I have not been able to see where it was even filed.
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Re: PML Cases now reach 298

Postby cheerleader » Mon Oct 22, 2012 7:48 pm

Stillfighting--If you're in the US, you can search this site to see if your doctor is listed as receiving industry money---
http://www.propublica.org/series/dollars-for-docs

Another way to learn about pharma payments is to search your doctor's name + disclosures on google. Or search the name + biogen. Also try the name of the clinic in this search, or the names of the other physicians in the practice.

No one can make you take any medication. This is an essay written by a doctor who has MS, and she said NO to her MS specialist regarding drugs. I suggest you bring this in to your neuro. This kind of pressure is not ethical, and it is certainly not legal
http://commonhealth.wbur.org/2012/08/pa ... the-doctor

hang in there. Take care of yourself. Let us know how you're doing.
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Re: PML Cases now reach 298

Postby stillfighting » Mon Oct 22, 2012 7:56 pm

Thanks I will check it out. All I really wanted to discuss was if he thought it was rational to wait and maybe do a once i .v of solu medrol.
Or if he had any plan of how to come off of Tysabri .. if I could not take it or if/when I wanted to come off of it.
NOT he is not having any conversation. JUST do it.. do it now.. don't ask questions. DO not waste his time. I do believe his failure to prescribe symptom medication is to put pressure on. OH and I figure I can't count on him to presribe BG-12?? I am under the gun to find a dr.
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Re: PML Cases now reach 298

Postby stillfighting » Mon Oct 22, 2012 8:39 pm

I did mean that sarcastic about the Touch program. I have had nothing done but to tell me to show up for the infusion, NOW. I have heard stories about Dr's being pushy like this. I am just now living it. It is a really bad experience. I can't believe it's because he feels he has my best interest at heart. Even if I really should be on a ms medicine or not. That was not the way to get it done. He could have talked me into very easily with a few kind words and some facts.
Actually no one from the infusion center has even called me since Biogen sent them the paper work 3 weeks ago.
The whole team seems lazy and slow. This may be a good thing. I pray for a remisson, but fear one will not be forthcoming.
This has been an exhausting day I have do have a call into one dr! I could not find anything on that site or google.
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Re: PML Cases now reach 298

Postby HarryZ » Tue Oct 23, 2012 5:33 am

He was not set to make anything on ME, that I know of. I do not think at all. I have only seen him once in his office. I have not been able to see where it was even filed.


Biogen is known to give docs honorariums for their support in prescribing certain drugs. Gets around the technicalities!

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Re: PML Cases now reach 298

Postby stillfighting » Thu Oct 25, 2012 2:58 pm

I have scheduled my tysabri infusion, I do not have another neurologist to go to. My neuro has refused any medications for pain.

My family knows I post my story here, I have let them know my user name in case something happens to me. There is more to my pain than I have posted and some more to my neuro than I have posted. He is beyond abusive.

Why he is doing this is a horror story. I have to get relief is there is anyway to have any life left. If Tysabri will do it then so be it.
My only alternative would be solu medrol he has refused .. . I have gone down hill so fast. He refuses to try it . I have told my family
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