Hey, Erin. I hope plasma went well and that you are better.

Something about what Deb said in your last post got me to thinking. What if you are having some kind of allergic reaction to IVIG? But you are on Prednisone, which is what is used for moderate to severe allergic reactions, so you don't exhibit the "obvious" signs of an allergic reaction like hives. I think I remember you saying that when you withdraw from Pred, the pain is worse.

What about any inflammatory markers like erythrocyte sedimentation rate or c-reactive protein. Have you been tested for those? What if you have inflammation from an allergic reaction causing pain?

I may be way off base but you have to wonder if there is a connection. Have your doctors ever tested your tryptase levels?

http://www.aruplab.com/guides/ug/tests/0099173.jsp

The pain you're having has got to be from a drug or drug reaction. Please talk to your doctors about this. I don't have any sites to give you - it's just a hunch.

Take care of yourself and post when you feel better. We miss you.

Annie

Annie,

what you say makes perfect sense.

I thought that this was the line of thought of her neurologist and that was why I was impressed by him (and mentioned so in my post).

the inflamatory markers that you mention would probably also be decreased with the pred. so could probably not help much, but a good response to plasmpharesis (in decreasing the pain, not only affecting MG) could serve to support this hypothesis.

sometimes formation of immune complexes can lead to an illness called serum sickness, and their clearance with plasmapharesis may definitely help.

and I do hope that she is indeed doing better.

alice

I have been trying to think of those words all day: serum sickness. Thank you, Alice!!!! Talk about cognitive dysfunction. I was only coming up with host graft disease and stuff like that. Duh.

Funny thing about those inflammatory markers though. When I was on steroids, and got a lovely case of C-Diff, my ESR was 104. Just tells you how bad off I was.

I just hope Erin is doing better.

Annie

Here, Erin.

http://emedicine.medscape.com/article/756444-overview

Erin, How are you? I hope you are okay. It's not like you to be so quiet.

Annie