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 :scared::scared: (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 (http://www.rheumatology.org/publications/hotline/0107leuko.asp)

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.

[Dirty Don]

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

Really Dorothy? They have tornados there you know...sighs...

[carriej22]

Don, with all the weight I've put on I'm not sure tornados are really much of an issue.. LOL... However I have lost about 30lbs, yay me!

OK, so yesterday I seen my specialist. I did not mention the PML word, it was sort of like an elephant in the room. My doctor didn't mention the word either (maybe it's one of those words like beetlejuice that you're not supposed to say? I have no idea). Anyway, he sort of wants to watch it. He said that if my limbs/body starts tingling or I'm having issues seeing or something to call him and he will have me in to see a neuro-dude and all this other stuff I didn't know what it meant. Sounded complicated and confusing so I just agreed. I am also now put up to 200mg of Imuran. This is 100mg more than where I started and 50mg more than I was on. I guess my CRP is climbing high (60ish) and he wants it lowered. Obviously this makes me sad... I don't feel sick though - what could be the cause of this CRP? Is wegeners eating my brain?

I seem to just be in a bit of a fog - sometimes I trip too. Weird stuff like that. It amuses my husband (especially when I trip) but not me. Sometimes I have a problem saying exactly what I'm thinking and it comes out kind of confusing - but my doctor said a lot of people do that. The issue is, I never really did. I find myself not making as much sense as I used to. I also sometimes get the feeling that I'm "dreaming" like this isn't real life... LOL...

I have applied for another job, ontop of all the regular crap I do (freelance graphic design, salon, running a house, volunteering for a greyhound rescue and all the other stuff I forget) I am worried about my body. However, government refuses to give me money and we can't live on the streets. I also refuse to give up things that we enjoy, so work more it is.

I am a bit concerned because it seems like I get the shakes when I get tired. I have them right now... And I really didn't do anything today :(... I got up, ate breakfast, laid on the couch, went downstairs and watched the fish, just chopped up some veggies for supper and put them on to cook and now I've got the shakes... What causes these shakes? People are quick to point to pred, but I havent been on high pred since the winter -and even then it was only like 20. I'm only on like 2.5mg now, and have been for months and months.

[Debbie C]

Hey Carrie, boy you are going thru some stuff huh?? How long ago did you get your RTX infusion. I know when I read about PML before my infusion I freaked. I started feeling some of those systoms when I was first diagnosed and on high doses of Ctx and pred.It took me alot just to concentrate on something. Maybe it's a side effect of the Imuran or a mixture of something. Why don't you go get an mri of your brain done,that would rule out some things. I never knew that I had had a stroke or 5 TIA's before my mri.Maybe you had a minor stroke or something. Hope you get the answers and feel better soon:confused:

[Debbie C]

Also do you think it might have been caused by the bites you had gotten. Like west nile virus with moquitos ????

[carriej22]

Holy CRAP! West Nile! Debra you're trying to kill me lol

It was way before the fly bites for sure, but those were some nasty bites anyhow.

[Debbie C]

:lol: Sorry Carrie !!!I didn't mean you had West Nile just that maybe the infection from the fly bites made you goofy ! Did you ever watch the movie The Fly where the man turns into one....maybe THAT'S whats happening !!!!!Ask your hubby if you start buzzing in your sleep !

[carriej22]

Hahahaha OMG!

Not sleeping tonight! Thanks Debra! LOL.. Just kidding!

Fly bites are all healed up and I'm still goofy.



I'll just be over here in the corner... You know... Drinking bleach and what-not.