PML

[stillstANNding]

As someone mentioned, she knew the risk. She was in a situation where she was having one episode after another. She needed a new drug. This worked for her for most of the 9 years.

I know someone in the You-tube community that only had one dose before she got PML.

I will try very hard to not take one of the PML causing drugs but I am unlikely to be in a situation to need one. You never know, though.

ANN

[SuzE-Q]

I'm very sorry, ANN. I hope she can recover from the damage that PML has done. When something's working, it's easy to get lax about a risk of PML, even if one is JC+, but it's another can of worms when you unfortunately become one of the statistics.

Agate, I've never heard of a mild case of PML, and 25% mortality from a side effect sounds like a lot to me. Never mind the IRIS which is again, scary, to put it mildly. I think these people are brave who risk their life to go on these drugs, and their health to go off of them.

Please let us know how she's doing, ANN. My very best to your friend.

[stillstANNding]

I just got to talk to her on the phone. She is a little confused but mostly OK. She had the plasmapheresis today, 1 of 4 that are planned so far. She said she felt better than she had in a long time while on it but that changed quickly after it was over. She needed to sleep.

She knows she is confused and is amused by it. She expects to get better every day because of the plasmapheresis. I think she has forgotten about IRIS. That's probably a good thing right now.

ANN

[Sunshine]

Yes. Denial can protect her mind from collapsing under the sheer weight of this.

What if drug companies were not allowed to sell drugs with that high of a risk of death or near death? Might they then spend more effort developing a drug with a better side effect profile? We know that pharmas are amoral. They weigh every choice against financial risk. Maybe the green lighting of Tysabri and Techfidera dampens the drive to develop safer drugs.

[stillstANNding]

If you remember, patients clamored to the FDA to be allowed to decide risk for themselves. This was when the FDA was considering whether or not to allow Tysabri to be re-released w black box warning. A member of this forum testified in Washington then.

I am thinking now that no one can actually imagine this happening to them.
ANN

[agate]

SuzE-Q, it's a 23% risk, not 25%--not a huge difference but there it is.

As far as a "mild" case of PML goes, PML was initially found mainly in AIDs patients, and at that time it had a very high fatality rate but for some reason the PML cases in people with MS on Tysabri have had a much lower death rate. I guess that makes them "milder" cases. In a way.

ANN, I do recall that a member of this forum testified in Washington in favor of the re-release of Tysabri.

I just ran across her name in MS Focus magazine. She is an MS Ambassador for the MS Foundation and I believe will be writing a regular column in the magazine.

[Virginia]

I too remember that person who testified in Washington.

Ann, I am very sorry to hear about your friend and I just wish her the best. However, it was my thought that even if you don't die from PML that it so alters your brain to the point that some may feel that they would be better off if they had. There are other things that it does also.

I had a friend some years ago who went on Tysabri and she got a call from her Doctor one morning saying that he needed to see her right away. She went in and found that they said she "might" have it. She had a hard time dealing with it. She was a single mom with then college age children. She even wrote them letters telling them what she wanted for them in the future and things they should do. She did not mail them, but just kept them. When blood work that had to be sent off came back she did not have it. She was JC positive, but the Doctor told her a person can be JC positive sometime and not at others. She remained on Tysabri. She and I kind of lost contact and I wonder about her a lot.

I will pray for your friend to have a complete recovery.

[stillstANNding]

Thank you, Virginia. And thank you for prayers. I am asking anyone who prays or has a prayer group at their church or thinks good thoughts to add her to the list. I can't give you a name because I haven't asked her and because I believe she can not properly give consent at this time. God will know who it is.

She just called me twice in error. She is confused. I am #3 on her speed dial and her husband is #1. She was having trouble jabbing the right number.

ANN

[stillstANNding]

There's a change in plan. There will be 4 plasmapheresis sessions but will be stretched out to every other day. I don't know why.

ANN

[Sunshine]

Maybe insurance related?

[stillstANNding]

But she is in the hospital, BBS, it will take longer.

[Lazarus]

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

Hello Ann,
So sorry about your friend. Watching is so very hard. I am sure you feel helpless at a moment when you would do anything to help. My best thoughts are with you.

[Catdancer]

I'm so sorry to read this. I remember the clamour to release tysabri. Serious risks were known then, but when faced with no good choices, you take chances...

[stillstANNding]

I have been looking for recent treatment protocols for MS patients w PML after Tysabri. I haven't found exactly what I want but I found this:

Only registered and activated users can see links., Click Here To Register...

It used interlukin 2.

ANN

[SuzE-Q]

I have been looking for recent treatment protocols for MS patients w PML after Tysabri. I haven't found exactly what I want but I found this:

Only registered and activated users can see links., Click Here To Register...

It used interlukin 2.

ANN

It appears that copaxone may help minimize IRIS resulting from Tysabri withdrawal, although these were voluntary withdrawals, so further research may update if we know anymore today or in patients who had developed PML:

Only registered and activated users can see links., Click Here To Register...