Need Name of Doctor for PML Management and Treatment ASAP

[NHE]

I have had 26 tysabri infusions and have been in good health up until last week. Am experiencing what I think to be a relapse but unsure. Am JC positive and previously on Avonex for 8yrs.
Has anyone experience of PML and exactly what to look for in early symptoms?

Sonia,
Welcome to ThisIsMS. If you're experiencing worsening symptoms while on Tysabri and suspect either a relapse or PML, then I would contact you neurologist as soon as possible as you may need an MRI as well as other diagnostic tests.

NHE

[MomJ]

It is difficult to differentiate between PML and an MS flare up. You need to be seen by a neurologist who is familiar with PML or at least who will communicate with one who is. You can find names of PML-experienced doctors via the following link to the June 2013 New York Academy of Sciences PML presentation here http://www.nyas.org/Events/Detail.aspx? ... 14f04bf58d
The earlier the treatment of PML, the better are the odds of successful treatment. If you get a spinal tap, make sure the doctor and lab understand that you need a quantatative analysis of the JCVirus in the fluid, not just a test that tell whether you are positive or not. This can only be done only at a few labs in the US. One is focus Labs in California. You don't want to have to do this again to get the viral load, so be sure you don't get a report that is only "detected or not detected" . The quanitative analysis (which is a viral load count) will tell you where you are, as you fight the virus. It only takes 24-48 hours to get a report back
If JCV is present in the CSF, then they will generally start the PLEX. Then the debate is a little bit of IRIS may be desirable. If one has PML, from tysabri then treatment with steroids may lower the immune system and allow the JCVirus to get worse. It is a double edged sword. And for this reason it may not be desirable to treat immediately with steroids,or even soon after until IRIS is actually present. This all has to be determined by a good neurologist who understands what your MRI shows.
The main point here is, if a PML competent neurologist recomends it, to do a spinal tap as soon as possible when there are symptoms and especially more than one symptom such as change in speech, handwriting, gait etc and JCV positive. Also, PML can present itself without enhancement on the MRI. There are a number of doctors around the country who are experts in PML and many who have never treated. What area are you in?

[centenarian100]

Has anyone had current or recent experience with PML?
Whom, in addition to Biogen, should be contacted for consultation for PML management and treatment?
Who are the expert doctors in this field?
My nephew is currently hospitalized and getting his second session of plasma exchange for PML treatment. He was on Tysabri for five years and was just diagnosed with PML.
Thank you.

Wow. I'm so sorry to hear about your nephew. You may want to ask your neurologist for an infectious disease consult and infectious disease specialists, particularly those who treat a high volume of AIDS patients probably have much more experience in treating PML than any neurologist.

For natalizumab associated PML, plasmapheresis is a standard treatment. Mirtazipine (an antidepressant) has been shown to have some in vitro activity against the virus (though not proven to be beneficial in human subjects), so you may want to ask your doctors about initiating this as well.

Here is a report on the idea just as a reference: http://archneur.jamanetwork.com/article ... eid=796502

If your nephew develops significant inflammation around the PML lesion as his immune system enters the central nervous system, some experts advocate the use of steroids if needed, but this is controversial

Best of luck to your nephew. I wish him well.

[centenarian100]

It is difficult to differentiate between PML and an MS flare up. You need to be seen by a neurologist who is familiar with PML or at least who will communicate with one who is. You can find names of PML-experienced doctors via the following link to the June 2013 New York Academy of Sciences PML presentation here http://www.nyas.org/Events/Detail.aspx? ... 14f04bf58d
The earlier the treatment of PML, the better are the odds of successful treatment. If you get a spinal tap, make sure the doctor and lab understand that you need a quantatative analysis of the JCVirus in the fluid, not just a test that tell whether you are positive or not. This can only be done only at a few labs in the US. One is focus Labs in California. You don't want to have to do this again to get the viral load, so be sure you don't get a report that is only "detected or not detected" . The quanitative analysis (which is a viral load count) will tell you where you are, as you fight the virus. It only takes 24-48 hours to get a report back
If JCV is present in the CSF, then they will generally start the PLEX. Then the debate is a little bit of IRIS may be desirable. If one has PML, from tysabri then treatment with steroids may lower the immune system and allow the JCVirus to get worse. It is a double edged sword. And for this reason it may not be desirable to treat immediately with steroids,or even soon after until IRIS is actually present. This all has to be determined by a good neurologist who understands what your MRI shows.
The main point here is, if a PML competent neurologist recomends it, to do a spinal tap as soon as possible when there are symptoms and especially more than one symptom such as change in speech, handwriting, gait etc and JCV positive. Also, PML can present itself without enhancement on the MRI. There are a number of doctors around the country who are experts in PML and many who have never treated. What area are you in?

excellent post. thank you for the information.