Need Name of Doctor for PML Management and Treatment ASAP

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Need Name of Doctor for PML Management and Treatment ASAP

Postby UncleB » Thu May 09, 2013 6:36 pm

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.
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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby HarryZ » Thu May 09, 2013 7:27 pm

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.


That is very unfortunate about your nephew.

I would think that a good MS Clinic would have the information you are seeking. BTW, was your nephew ever tested for the JC Virus during the 5 years he was on Tysabri?

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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby UncleB » Thu May 09, 2013 8:39 pm

Harry,

Thanks for your input. His neurologist is working with other neurologists in her practice, and she is board certified with decades of experience treating MS patients. So I think we have already contacted "a good MS clinic" as you suggested.

Yes, he tested positive for the JC virus.

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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby NHE » Fri May 10, 2013 2:30 am

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)).


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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby HarryZ » Fri May 10, 2013 7:05 am

Yes, he tested positive for the JC virus.

UncleB


Being positive for the JC Virus unfortunately really increases your chances of coming down with PML...believe the latest figures show a 1:300 risk factor for Tysabri use beyond 2 years.

Curious to know if at any time during your nephew's 5 year use of Tysabri was he advised of the increased risks being JC virus positive? Also, what level of the disease did he have when starting on the drug? Thanks.

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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby UncleB » Sat May 11, 2013 5:39 pm

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

Thanks for your input. I found an upcoming New York Academy of Sciences PML conference on June 19-20 in which PML management is a topic. So that conference should shed light on current PML management. The conference notification lists presenting doctors, who are likely experts in the field.
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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby UncleB » Sat May 11, 2013 5:50 pm

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.

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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby HarryZ » Sun May 12, 2013 5:46 am

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?

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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby NHE » Sun May 12, 2013 3:54 pm

Here's one case report of lethal IRIS following Tysabri withdrawal.
tysabri-antegren-or-natalizumab-f11/topic21087.html#p200117
That's why treating with steroids following plasma exchange is so important.
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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby UncleB » Fri May 17, 2013 10:26 am

NHE

Thanks for the info. As I understand it, he is being treated with steroids due to the IRIS concern.

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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby UncleB » Fri May 17, 2013 10:41 am

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


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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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby HarryZ » Fri May 17, 2013 11:23 am

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.


That's very unfortunate. Sounds like PML caused his sudden decline. Hope he can recover to some extent.

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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby lovemysis » Fri Jun 21, 2013 6:14 pm

Hi!
It may be too late, as I see you posted this a while ago. My sister was just diagnosed with PML and I was wondering how your nephew was doing. I assume he is already undergoing treatment, but I have done a lot of research and am happy to pass along any information if you still needed it. She is starting on a treatment regimen on Monday that has been used with some success in 10 other PML cases. Your nephew is in my thoughts!
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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby Chachi142 » Mon Jul 22, 2013 6:08 pm

Hi Lovemysis,

Our mother was just diagnosed with JC Virus and PML yesterday. She's in a hospital now but we don't think that they're equipped well to treat the condition. We're looking to have her transferred ASAP. Please send any info that you can.

Mom doesn't have MS or any of the other typical conditions that exist with PML patients. Her condition has been a complete mystery until now. They do know that she's severely immune-suppressed, that her JC Virus levels are off the charts, and that a brain biopsy showed a very small amount of demyelination.
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Re: Need Name of Doctor for PML Management and Treatment ASA

Postby SoniaM » Sun Sep 01, 2013 2:47 am

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?
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