Comments on: Biogen Shares Drop as Tysabri PML Cases Climb to 23, Europe May Seek Drug ‘Holiday’

By: Maggie

Maggie — Sat, 17 Dec 2011 18:50:28 +0000

Hi, I’m sure the #s have changed over the years…and no it does not mean a person will die…they may not even become severely disabled. When Tysabri first came out a person on it wasn’t tracked as closely as they are now.

If you’re on FB there’s are a couple of groups for ppl on Tysabri, who have PML or know someone who is/has…It’s Tysabri & PML (Progressive Multifocal Leukoencephalopathy) – Deferno Trust & the other group is Tysabri & PML (Progressive Multifocal Leukoencephalopathy). The person who developed the site unfortunately has a wife who is seriously ill due to Tysabri related PML. You can learn a wealth of information from this group…

By: Pat Jones

Pat Jones — Sat, 17 Dec 2011 09:56:19 +0000

I have been taking Tysabri for 57 treatments now and I have no side effects from them. Mr MRI shows no new lesions, they have remained the same since I have been on Tysabri. My blood shows I have the JV VIRUS, but I watch very carefully any new changes. This disease will never beat me I will beat yet.

By: gerri blomquist

gerri blomquist — Sat, 17 Dec 2011 05:42:11 +0000

You are saying that 1 in 1,000 get PML. Does that mean that they die? Does that mean that if they don’t die, are their brains seriously and permanently damaged? By getting the bloodwork done regularly, if I develop the virus, will I have time to stop my treatment before I die? How do we pick up this virus. How do we know if others have it? Do they show symptoms? If I get it , what are my first symptoms and if I show symptoms do I have time to stop the treatments before they harm me???
I am happy to be on the drug, but I am scared. I need more education.

By: Maggie Cosgrove

Maggie Cosgrove — Tue, 12 Apr 2011 22:33:45 +0000

Hi Patricia, Tysabri is a gamble…some will win and some will lose…I’m glad to hear of your success!!! I wish you many, many years of no new lesions! That’s wonderful! At least now they carefully monitor patients on Tysabri, unlike when it was first released. I say all you need to beat MS (or anything) is a great attitude, doctor and support. xxxooo be well!
Maggie

By: Patricia

Patricia — Tue, 12 Apr 2011 20:21:28 +0000

I have been on Tysabri for almost 4 years. I have no side effects from the Tysabri and just tested positive for JV virus. I have had no new lesions. I know all the chances of developing PML, but I feel since I was diagnosed late in life at the age of 61 that taking this chance will give me more life. This disease will not beat me I will beat the disease.

By: Maggie

Maggie — Mon, 04 Apr 2011 12:16:08 +0000

Stephanie, I’m so sorry to hear of your sister. I always knew a person’s chances of developing PML increased with the amount of Tysabri treatments. (And that’s before the “Experts” published that fact!)

(Study) Now they have identified a virus (JC Virus) and if a person has this virus identified in their blood work they have a 1:1000 chance of developing PML, compared to 1:20,000. (Yeah my number may be off a little.) So, I have that virus and will not take a 1:1000 chance.

My thoughts go to you, your sister and family. :(

AND, I still think Biogen cares more about profits. They’re a business! People go into business to earn money.

Maggie

By: stephie

stephie — Thu, 02 Dec 2010 16:48:19 +0000

All I can say to those using Tysabri is if you see even the slightest decline consider stopping the treatments or better yet don’t take more than 12 treatments. My sister is one of the unlucky ones. She had 25 treatments. She is now confined to bed and cannot talk at age 41. She cannot do anything for herself and is not expected to recover. Tysabri seemed to help her at first too.

goodluck

By: Maggie

Maggie — Tue, 11 May 2010 20:08:11 +0000

I also know loved ones who are benefiting from Tysabri… This is a horrible disease.

By: Lori

Lori — Mon, 25 Jan 2010 03:32:07 +0000

Someone I love has PPMS and every MRI before he started Tysabri showed new damage. Now since being on Tysabri MRI’s are showing no new damage. To us the benefits greatly outway the risks. Thats the decision people have to make.

By: Maggie

Maggie — Thu, 19 Nov 2009 01:30:43 +0000

I have MS and could not tolerate other therapies. I was offered Tysabri and declined because I feel PML will continue to increase the longer a person is on it. Shame on Biogen for caring more about their profits than the lives of others.