Tysabri risks

[meggs523]

Hello everyone!  My mom has battled MS for over 20 years now and is now wheelchair bound.  She has been on every medication available with little results, and has now been on tysabri for almost two years.  Last week when she went to the doctor, she was informed that patients who has been on the tysabri infustion for over two years have a greater chance of developing the brain infection PML.  I believe she was told the odds went up to 1 in 800.  However, she was also told that if she were to stop tysabri she was pretty much guaranteed to have an attack of the MS.  She has an agressive form of MS and other medications don't seem to work.  We haven't seen much improvement with tysabri, but at least she hasn't had anymore attacks while on it.  Can anyone shed more light on this for me?  I was hoping to gather more information on this if anyone has it. Please let me know!  Thanks!

[Quixotic1]

I have a different take on the risk of Tysabri.  What I see as a big risk is the near certainly that your mother will go downhill - possibly rapidly - if she stops the Tysabri.  Lets call this a 1 in 2 chance or worsening severely.

Then you look at the slightly increased risk of PML after more than two years on Tysabri.  The initial risk was 1 in 1000 and now it has increased to about 1 in 800 according to her neurologist.  That means that out of 800 people who have been on Tysabri for an extended time ONE will develop PML.

Alex is correct that there is no right or wrong.  But, what so many people fail to look at is the chance that they will become much worse with the MS versus the much, much smaller chance of developing a potential fatal infection.  When we talk about severe worsening with the MS we are not just talking about losing the ability to walk, but also maybe of losing the use of hands, of significant trouble breathing and maybe needing a tracheostomy, or of inability to swallow and needing a feeding tube.

Incidentally, 1 in 800 in the chance that any given person in the US might develop MS.  799 will not, 1 will.  Do we say that all Americans have a big risk for developing MS?  Just trying to put the words "big risk" into perspective.  The difference here, I realize, is that the risk of PML is death or more severe brain damage, so those are "big" in their effect.

I'm not pushing Tysabri.  But too often all I hear from people is their risk ON Tysabri and not their risk if they don't take it.  Personally I don't know about the risk of PML as one gets farther and farther into the use of Tysabri.  I'm not sure how many people have been on it three or more years.

I have read quite a bit of research that is tring to get a handle on which people are at greatest risk of PML.  We know that 90% of the population has had the JC virus and it is dormant in their bodies.  We know they can watch as the antibodies appear in the serum, then in the urine and eventually in the CSF.  I am hopeful that they will find some signals that a person's risk of uncontrolled brain infection is rising.  Also, by protocol, they watch a person VERY carefully for any signs and at the slightest indication they will take the drug out of the system via plasmapheresis.  However, we don't have that signal or marker right now.

Anyone?

Quix

[HVAC]

I am a no doctor. I have been to talks by MS Specialist and the thing is Tysabri can be a very affective drug but it does have a big risk. Personally your mother and her doctor have to do a risk analysis and she has to decide what is best for her. There is no right or wrong answer.

Alex