Beth-answered you in the cidp forum. Emma

Beth,

Will say a prayer for you and will be thinking of you. Good luck with everything and keep us posted.

Jerimy

Hi Beth
I will add you to my prayers that all goes well.
Not sure what iv your doc will use, but I had a subclavian port in that had 3 access-a nice thing about that is that you can receive any needed fluids and medicines extra all at the same time. So, if there is a problem, everything is already in place for you and no additional iv sticks.
Regarding the shakes-Prednisone used to give me the shakes so bad all over, my gp gave me xanax, and that helped. Just a suggestion what worked for me. Those shakes are mean suckers!!
Good luck Beth and please stay in touch. Feel free to PM me any time. I am on here every day and will do whatever I can to help.:)

Emma

I’ll keep you in my prayers! Hopefully everything will go smoothly with the insertion of the cath and the plasmapheresis this time around.

I am so sorry you have been not feeling well. My husband has had the tremors with cidp also. We do not know for sure what it is from. Someone said from low blood pressure . His is low so I told them at the hospital before he got his plasma phersis he has low pressure I think from a pill to slow his heart down since he has a stint however it works as a blood pressure pill which we did not know. So they took it away from him for now as the pp also brings it down.Are you on any blood pressure pills that would do that

Do not know why you had reactions from pp last time but maybe this info will help you. He has been off of prednisone for a while also so it was not from that. Did you get an infection before?
He just had his first of pp and is not shaking so far. He would always fall when his legs had tremors.

I do not know how many types of things they use for pp. He had something that looked like a straw and it was about 7 inches long. Hope you do ok this time. I am sure they know why you got sick the last time. Ask them and maybe that will releve your mind.
Will be thinking of you
Joanf

Hi Beth,
I Hope everything goes well for you! I’ll be sending positive thoughts across the ocean!
Beth, you mentioned whole body tremors – as if you are shivering from the cold. I have that too – and afterwards when the shivering has settled down, I ache all over. I try not to get a chill if it’s cold as that can start the shivering and it takes about half an hour or so to settle – I’ve had these since coming down with CIDP and in my case I can’t blame medication for them.
All the best,
Kazza

Ditto what Kazza said – even the hair on my head gets the shivers and it’s not medication for me either, this usually happens when the IVIg is wearing off.

[FONT=”Comic Sans MS”][SIZE=”3″]Beth,
Wishing you the best with your treatments.
For me Plasmapheresis was a miracle, living with a double lumen catheter for 6 months well worth the minor inconvenience of having to wash my hair in the sink:o
Don’t think of it as permanent, though. Mine is out and there’s just the smallest depression in the skin to mark it’s place.
Used to joke with the nurses in the dialysis unit that i’d make earrings of it when it came out, and i’d have the latest fashion accessory!
Take heart and keep the faith
V[/SIZE][/FONT]

I would get body tremors with the plasmaphoresis but it was from being cold. The albumin they put back in was room temp and that would cause my body temp to lower. They also get concerned about the calcium levels and it being from that. Good luck with the catheter. They sure save a lot of poking and prodding!

[FONT=”Comic Sans MS”][SIZE=”3″]Beth,
Just wondering how it went?
Hope all is well.
V[/SIZE][/FONT]

good luck with your treatments. stay hydrated. when I have my pp I make sure I drink plenty of gatoraid or something on that order. I also make sure I have some peppermints with me. This might sound weird but when they flush my catherder I can taste thee meds.
mj