PML has a pretty rapid course. It starts affecting the brain before anyone usually notices what's happening. That's why you have to be vigilant to any changes. Confirming it on MRI means the damage has already started.

The doc asks the old man at every visit if I have had any changes in my thinking or odd behaviors and reminds him to watch for them too and not to wait, just call him, and not to argue with me over it......like I wouldn't believe I'm sick or something!

He's said it enough that I listen to my body closely. He also stresses that anything that looks or feels even mildly like a relapse is a reason to call. Those will be the first symptoms.

He's not big on MRIs unless they are necessary, and I've only had two since I started. Those were at yearly intervals to see what's happening in my flip top head. They were excellent.

I agree, RW. I wish they would keep supplying this information to patients. We (the communal "we") fought for this drug, AND the PML monitoring process ... so I think they owe us ongong transparency.

It seems they should have patterns established by July 24th though... since they see that as the reason to no longer supply this PML incident information to patients ... then those who are at more risk can weigh up their decision on that basis.

That appears to be a "study" of some sort, possibly sanctioned by Biogen. I'm quite sure that the majority of EX-US patients have NOT used stem cell treatments, and/or that there are no US patients who've used other strong immunosuppressants at some point before Tysabri.

If immunosuppression is a potential risk factor though, can you link to a definition of how long people are supposed to wait/dependant on what drug, before going on Tysabri, Chris? I haven't (personally) seen that criteria detailed even for US patients yet.

It was just a small study, but it is interesting that the results show that THOSE strong immunosuppressants didn't seem to affect the outcome.

I hope they are undergoing bigger (and longer) studies, that might give them more conclusive evidence that immunsuppression either does or doesn't influence the development of PML. Maybe they are waiting on those results as we speak, and that this may be why they think they are getting closer to answers ...

Cherie

Cherie,

The study was an example of what European Docs are trying relative to Tysabri. I've also seen discussion of German Docs liberally using heavy immunosuppressants as well. I'm personally glad patients with no other alternatives are being given the option (Versus here in the US where Tysabri can't be used off-label.) to take Tysabri. Clearly this can have an effect on the rate of PML seen with Tysabri usage in Europe.

I have seen no formal documents listing wash-out periods for various drugs. My doc made me go through a 6 week wash-out for Rebif. I've heard others with ABCR wash-out periods of 4 weeks. I've seen some other posts about a 6 month wash-out for Novantrone. The trouble with wash-outs for these more powerful drugs is that they sometimes have residual effects for very long periods - example being Novantrone patients developing Leukemia 18 months after the last dose of the drug.

Chris

Chris, your link, which led to the study yesterday, does not seem to have an article associated to it any more. I'm linking to a "no page available" now, are you? If so, do you have another link to that study?

NIAID seems to have a similar stem cell trial going on out of various places in the USA.

The purpose is:

Purpose
The purpose of this study is to determine the effectiveness of a new treatment for multiple sclerosis (MS), a serious disease in which the immune system attacks the brain and spinal cord. MS can be progressive and severe and lead to significant disability. The study treatment involves the use of high-dose chemotherapeutic drugs to suppress the immune system. The participant's own (autologous) blood-forming (hematopoietic, CD34+) stem cells are collected before the chemotherapy is given, and then transplanted back into the body following treatment. Transplantation of autologous hematopoietic stem cells is required to prevent very prolonged periods of low blood cell counts after the high-dose chemotherapy.

And one of the inclusion criterias is:

Criteria
Inclusion Criteria:

•Two or more relapses in 18 months time on interferon (IFN), glatiramer acetate (GA), natalizumab or cytotoxic therapy with EDSS increase of 1.0 or greater for participants with EDSS at screening of 3.0 to 3.5 (0.5 or greater for participants with EDSS at screening of 4.0 to 5.5) sustained at least 4 weeks after at least one of these relapses OR one relapse on IFN, GA, natalizumab or cytotoxic therapy with EDSS increase of 1.5 or greater (1.0 for subjects with EDSS at screening of 5.5) sustained at least 4 weeks, together with MRI changes consistent with poor prognosis. More information on this criterion can be found in the protocol.

http://clinicaltrials.gov/ct2/show/NCT00288626

I don't remember the particulars about the small study you linked, but it seems that there are people willing to try some back-to-back serious heavy-duty drugs everywhere around the world.

Cherie

http://registration.akm.ch/einsicht....NMASKEN_ID=900

Thanks Chris.

Well it looks like they were quite careful in waiting a mean of 18 months before administering Tysabri, whereas the US trial seems to only require 3 months of no prior immunosuppressants (if Tysabri would be even considered an immunosuppressant ...?) before the experimental stem cell treatment.

Anyway, so far, so good ... as far as we know!!

Cherie

I need to correct this statement. PML actually starts out slowly. It is under the radar for a long time if not detected before it reaches the brain. It is when it reaches the brain that it starts to do the rapid damage that gets noticed, leading to MRI and diagnosis.

This is a link to another board where a person with PML has posted:
http://forums.wrongdiagnosis.com/showthread.php?t=49456

This person's experience is VERY compelling and a good warning for all of us on Tysabri AND for people searching for diagnosis because their signs and symptoms don't fit the norm.

If you are on Tysabri, be vigilant. Changes in vision, thinking and behavior are signs that something is wrong. You may be in relapse, but relapse isn't seen very often in people on Tysabri and the protocol is RULE OUT PML first before treating relapses with steroids.

I wonder if perhaps it starts out slowly in some instances ... but can go a lot quicker if "induced" by certain meds ...?

Thanks for the clarification.

Cherie