PML and Rituximab - anyone have any info?

[carriej22]

Hi Guys,

When I first received Rituximab I had a concern for PML - information suggests that the prognosis for this is essentially non-existent and poor.

I have informed my Doctor that I am having some neurological issues and waiting to hear back from him. I might not have PML, but I am certainly paranoid/scared about it. Lot's of strange side effects lately, putting things in wrong places (telephone in the fridge), numb limbs, issues with understanding what people are saying. It's like I hear them; but it's like Charlie Brown... WOMP WOMMMppPPPPp Wwwooooooommmmmmppppppp.... You know what I mean! There is "noise" but I have to ask them to repeat themselves and focus really hard on what they're saying.

I'm also having problems reading, I am always like closing my eyes and shaking my head. I generally love to read and write, so these things are concerning. I'm forgetting what I was doing, I'm losing time, etc etc....


Anyone else have any symptoms anything like this? I really, really, REALLY want to point the blame to something like prednisone - but I am down to 2.5mg of it.

I also take:
Imuran - 150mg
Septra - 1 tab
ran(something something) - 1 tab - stomach pill
Vit D, Calcium, folic acid

[pberggren1]

PML is not a worry, trust me.

But your symptoms are real. All can be summed up to pred.

[Alysia]

Dear Carrie,
It is an aweful thought (one for you and one for me)
I don't think these are symptoms of PML. symptoms and PML might be loss of vision, problems with coordination and paresis (problems with voluntary movement).
you can read this article and convince yourself that you don't have it. (or better leave it aside, this issue is anxiety provoking)

Rituximab and Progressive Multifocal Leukoencephalopathy | American College of Rheumatology | ACR

I think you should check your hearing and ears. it sounds like something to do with them.
plus: concentration problems can be the result of a lot of things, one of them might be the anxiety about PML.
please update us what the doc said.

[carriej22]

Well, my doc is concerned enough about the cognitive changes to take action, which in turn scares the crap out of me. He usually dismisses most of my claims like that but not this time. There seems to be a trigger, just have to find out what exactly it is.

Being on all these drugs is scary and to be honest I just want off them all. I got flybites a few weeks ago and they got INFECTED... Severely. Looked like I had some kind of severe skin disorder. They're almost gone now, but if my immune system can't handle that it makes me really concerned if I was to get sick again like last fall.

Are there any other options than imuran that don't lead to this?

[drz]

Well, my doc is concerned enough about the cognitive changes to take action, which in turn scares the crap out of me. He usually dismisses most of my claims like that but not this time. There seems to be a trigger, just have to find out what exactly it is.

Being on all these drugs is scary and to be honest I just want off them all. I got flybites a few weeks ago and they got INFECTED... Severely. Looked like I had some kind of severe skin disorder. They're almost gone now, but if my immune system can't handle that it makes me really concerned if I was to get sick again like last fall.

Are there any other options than imuran that don't lead to this?

Unfortunately a weak immune system is inherent in our treatment until they find a way to correct our broken immune systems. There seems no end to the problems we can get from our treatment but it may help to remember that without our current treatment regimes Wegs had a prognosis of living only a few weeks in almost all cases. Our lives certainly are more demanding than most other people with our myriad of health issues and concerns, but on the bright side we are still on the green side of the grass months and years after our diagnosis and helping support the health care industry.

[carriej22]

I just want to click my ruby slippers and go back to kansas.