PML

[stillstANNding]

A friend is in the hospital this morning suspected of PML. She had an MRI yesterday because this was a possibility. She is having a spinal tap now and then will have plasmapheresis. The doctor expects her to go into IRIS.

She is very polite and of good humor. She does understand but is childlike at present.

She has been on Tysabri for 9 years and was JC positive.

I'll let you know as I know,
ANN

[Howie]

Sorry to be so dumb, but I don't know what PML or IRIS or the JC virus is, but I don't really have to. I wish her the best, and that she can catch everything in the early stages.

[Sunshine]

That's just so terrible. I hope they can rescue her

"Progressive multifocal leukoencephalopathy (PML) is a rare (in the general population) but serious demyelinating disease of the brain, often resulting in severe disability or death, caused by lytic infection of oligodendrocytes by the JC polyomavirus (JCV)."

It can be a side effect of Tysabri and can kill you. Is it two other recent MS drugs that also do this?

"Immune reconstitution inflammatory syndrome (IRIS) (also known as immune recovery syndrome)... is a condition seen in some cases of AIDS or immunosuppression, in which the immune system begins to recover, but then responds to a previously acquired opportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse."

[Howie]

Thank you BBS. I've heard of them, but not all affecting one person. I'm glad I've never taken any MS drugs. I'll deal with the hand dealt me, and hope for the best.

[stillstANNding]

Anything that has -mab at the end of it's generic name. Stands for monoclonal antibody.

ANN

[nuthatch]

So sorry to hear this, Ann. Will keep your friend in my thoughts and prayers. Being JC positive and continuing to use Tysabri is a known and very real, serious risk. I'm sure she knew she was taking that gamble.

[agate]

How upsetting and sad! I hope she can recover from the PML/IRIS. People with MS who have Tysabri-related PML don't often die of it, if I remember right.

[Sunshine]

What is the death toll from tysabri? Is it about 500? Can't recall

[Howie]

No not near that many, but I looked at several sites, and none gave an exact number, or even an approximate number.

[agate]

I just updated the Tysabri-related PML thread. As of the end of August of this year, 23% of those on Tysabri who developed PML have died. The total number of PML cases as of 9/7/16 is 685. I believe that would be 157 deaths or thereabouts. A couple of the PML cases have been patients with Crohn's disease.

[stillstANNding]

Friend has lesions "on both her eyes" not typical of MS. Spinal tap was cloudy, indicative of infection. Plasmaparesis started early today.

They are confidant she has PML, unfortunately.

I talked w her several times by phone yesterday (she is unable to read text or use phone sized keyboard). She is very optimistic.

I can't reach her this AM. I am concerned that I may have talked w her for the last time. That if she survives this she will no longer know me.

I pray for and wish her the best.

ANN

[Jeanie Z]

:) I'm praying for your friend. Jeanie :)

[agate]

How sad--I hope your friend will be among the many who've survived PML without bad effects.

[stillstANNding]

They are all affected adversely. They lose parts of themselves.
It is so sad.

ANN

[Sunshine]

This really brings home the personal side of PML. So terrible . What happened to First do no harm?