Tysabri Stats and Research; The Good, The Bad and The Ugly!

Just read an interesting blog on Tysabri (Natalizumab) and PML.  It had some interesting stats.  Thank you Multiple Sclerosis Research Blog.  This is a great blog and I would suggest you follow it if you have MS.  It presents the research - the good, the bad and the otherwise!


115, 400 patients treated with Tysabri worldwide as of 31st March 2013

372 cases of PML while using Tysabri reported worldwide to 4th June 2013

85 patients who developed PML while on Tysabri have died (23%)

287 patients who developed PML while on Tysabri survived (77%)

Overall incidence of PML 3.13 per 1000 patients using Tysabri

Factors increasing risk of PML: JCV positive, previous immunosuppressant use (IS), Tysabri use > 2 years

Previous IS use approximately 3-4 fold greater risk of PML than patients with no previous IS use

Duration of Tysabri use prior to PML diagnosis 8-94 doses (mean 40 months)

Important to be tested for JCV every 6 months

Tysabri reduces relapse rate by 81%

Tysabri reduces disablity progression by 64%

Greater than 1 in 3 patients have no disease progression while on Tysabri


Here is a PML risk flow chart for your perusal...









So for me, I am Anti-JCV anitbody status negative, I have no complicating factors, therefore my risk of PML is 1 in 10, 000.  However I have a friend whose Anti-JCV Antibody status is positive, she has no prior IS use and has been using Tysabri for 25-48 months, therefore her risk of developing PML is 1 in 189.

Moral of the story.  Research, research research, assess, assess, assess!!  You should be speaking in depth with your neurologist about starting or continuing to use Tysabri.  Make him or her earn their payment; they are working for you and your health.  But don't start from a blank slate, take in some prior knowledge which you have gained from reading and researching.  The decision to commence using Tysabri was one I did not take lightly and I am JCV negative.  The benefits of using Tysabri are huge, but so are the risks.  I don't have any side effects and love Tysabri, but every time I am being infused with it, I am not worrying about my risk of developing PML, because I know where I stand with it.  Good luck MSers - put your glasses on and get researching.

Tysabri, You Little Champ!

Last week I had my six monthly MRI.  No biggie... my time in the machine wasn't long enough.  I had just fallen asleep when all the scanning finished and they pulled me out of the tube.  I've gotten very good at falling asleep in the machine, even with all the loud noise.

Today I had my neurologist appointment to go over what the scan had discovered about my brain. (That it is non-existent!)  Consciously I hadn't given the outcome much thought.  But subconsciously I think my body did.  I started to notice that my right leg felt a bit funny.  I mentioned it to my husband and he said, you said the same thing before your appointment last time!!  Then I pondered whether this meant the Tysabri was no longer doing its job or whether my head was playing tricks on me for a bit of drama and anxiety.  In the end, I told myself that I would know soon enough and it wasn't worth worrying about just yet.

The other thing that I did differently this time, is that I did not pre-empt what the neuro had to say.  I didn't go and pick up my report early.  I was meant to go and pick it up on Friday, but I forgot.  I could have picked it up yesterday (Monday) but I thought since my appointment was 24 hours away I could live without knowing the results.  Therefore I went into my appointment not knowing what the report said.  The down side of doing this was I paid $180 for about 10 minutes with my neuro, not asking about what I had read in my scan report.  FYI I did get $150 back from private health insurance.

So what did the neuro say?  ALL CLEAR.  No lesions, no activity - nothing new to report!!!

This is what the comment section of the report had to say: No significant interval change since 7 December 2012, with no features of PML identified.

PML you ask?  Progressive Multifocal Leukoencephalopathy - Tysabri increases your chance of getting PML, a brain infection that usually causes death or severe disability.  I think I may have written about PML previously.  PML starts out as JC virus (John Cunningham Virus).  I don't have the JC virus, but the JC Virus Test is not 100% accurate.  A "false negative" result occurs when the test indicates that the JC Virus is not present in your body, when it actually is.  This has occurred in a small number of people who have taken the JC Virus Test.  And this is why they look for signs of PML, which has symptomology similar to MS, in an MRI.

What does this mean for me now?  I continue on my once monthly infusion of Tysabri - it's a lovely three hour break anyway.  I don't need another MRI for 12 months, but I do need to see my neuro in six months.  I can live with that.

Woo Hoo!!!