Quote:
Originally Posted by sheena
When I last saw my neuro he gave me 6 choices of meds. I stated I wanted the best and most aggressive drug. Tysabri was his choice by far and I did the paperwork... I was told there had been 2 deaths, but one was a person with HIV and the other herpes. I'm fine there. However after research, it seems there have been atleast 6 or 7 die, and many others with severe problems after. Is this really true - I read it here and it seems to be backed up. I know all had a suppressed immune system, but mine is not the greatest. I'm COPD which he said was fine, sick a lot, need to go back for more tests on my B12 as it was off. I want the best, but I don't want to end up a veg. I feel like I can take a risk on death but not on getting worse or getting something else. Thanks so much ~Sheena~  |
Tysabri was removed from the market after three people developed Progressive Multifocal Leucoencephalopathy or PML. PML is caused by the JC virus, something 80% of the population carries in their system.
Out of those three people, two died.
One was a Crohn's patient who was on a combination of immune suppressing drugs for YEARS before Tysabri. Some of the drugs included Remicade, azathioprine and steroids. After digging the poor soul up, ( death was two years before Tysabri was withdrawn) and a lot of investigation, the FDA Adverse Events Register reports that the cause of death is suspected to be from PML due to Remicade.
The second patient was a woman who may not have had MS at all. There is some question as to whether she had PML evident already. She was also on a combination of Avonex and Tysabri. Even the experts cannot agree as to whether she had MS. Regardless of what she had, she died after being treated with a combination of drugs.
The third patient is still alive, although severely disabled from PML.
To date there are over 24,000 patients on Tysabri with NO further signs of PML. Many are reaching the 18 month mark of treatment.
I am not sure where HERE you read that 6-7 more people died from it. I'd like to read that post.
72% of people taking Tysabri had no flareups at the end of a two year study.
83% of people taking Tysabri had no disease progression at the end of a two year study.
Tysabri reduced EDSS progression by 67% in a two year study.
Tysabri reduced the number of lesions by 92% in a two year study.
As with every other drug on the market today, not everyone can take Tysabri, and it may not work the same for everyone. It is designed to REDUCE RELAPSES and SLOW PROGRESSION OF ALL FORMS OF RELAPSING MS.
If you need more information, please PM me and I will supply a box full of studies and more people you can speak with, along with Tysabri blogs and You Tube videos that you can watch from other patients who are on Tysabri.
As with all treatment, it is YOUR choice how YOU treat YOUR MS.
There is also a "sticky" at the top of the forum for people who are on Tysabri. You might read there for more personal observations.
Time is brain.