UncleB wrote: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.
UncleB wrote: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.
If PML is determined, treatment is plasma exchange 5x over a 10 day period. Steroids are given 10 days after plasma exchange in order to prevent massive brain inflammation from the immune system’s attack on the PML virus (immune system rebound inflammation aka Immune Reconstitution Inflammatory Syndrome (IRIS)).
Yes, he tested positive for the JC virus.
UncleB
NHE wrote:UncleB wrote: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.
Several years ago I went to a Biogen sponsored talk where the doctor, who was also an MS patient, was promoting Tysabri. This is what he had to say about treating PML...If PML is determined, treatment is plasma exchange 5x over a 10 day period. Steroids are given 10 days after plasma exchange in order to prevent massive brain inflammation from the immune system’s attack on the PML virus (immune system rebound inflammation aka Immune Reconstitution Inflammatory Syndrome (IRIS)).
NHE
UncleB wrote:Harry,
To answer your questions: yes he was advised of increased risk from being diagnosed as JC virus positive. I think he was about a 3-3.5 on the EDSS scale when he began Tysabri.
Also, see my above reply to NHE where there is a reference to an upcoming PML conference in New York which should provide some information on these issues.
UncleB
HarryZ wrote:UncleB wrote:Harry,
To answer your questions: yes he was advised of increased risk from being diagnosed as JC virus positive. I think he was about a 3-3.5 on the EDSS scale when he began Tysabri.
Also, see my above reply to NHE where there is a reference to an upcoming PML conference in New York which should provide some information on these issues.
UncleB
UncleB,
While on Tysabri for 5 years, was there any change on his EDSS scale?
Harry
I don't know the details. He went from walking unassisted to suddenly needing a walker or wheelchair. This decline was recent, maybe within the last month. That's when Tysabri was stopped and he was diagnosed with PML.
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