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Hi there. They are doing clinical trials on CDIP at the University of South Floirida. I would suggest you contact the principal investigater, Dr. Vu. He can help you, or help you find someone closer to your home.
USF Dept of Neurology
Tampa, Florida, United States, 33612
University of South Florida
Principal Investigator:Tuan Vu, MD University of South Florida
Hi Kathie. Here is a link to one trial they are doing, in case you are interested:
CDIP is an auto-immune condition and immunoglobulins are often used to suppress the immune system and calm (or cure) symptoms. While typically given by IV, these guys are investigating the use of subcutaneous (under the skin) immunoglobulins. This would be a far more convenient, and probably cheaper, method if effective. :-)
I see. I've never heard of this happening. That must have been frightening. Have you asked his doctors about plasma exchange? It is often used in lieu of IVIG, and has a similar success profile.
Yes, in Plasma exchange they take blood out through the vein, filter out the antibodies, and then return the blood to the body. There is no "pooling" of blood elements from other people as there is in IVIG.
Plasma exchange is a process of replacing the plasma in a person’s blood. Plasma is the liquid part of blood. The solid parts are white and red blood cells. In plasma exchange, blood is drawn from the person. The plasma is separated from the solid parts of the blood. It is then replaced with a protein fluid such as human albumin. Albumin is an important protein in plasma. The replacement fluid is mixed with the solid parts of the blood. A machine pumps this mixture through a tube into the body. Like any medical procedure, plasma exchange poses some risks, but is generally well tolerated.
Risks are few, complications are unusual. The tube used to perform the plasma exchange can sometimes cause infection. This is less likely if the person is in good overall health otherwise. The tube also can cause bleeding or puncture a lung when inserted, but I have never seen this happen. Another risk is a drop in calcium levels in the blood. To prevent low calcium, the person can take a calcium pill or receive a calcium injection. It is probably safer for your husband given what happened with the IVIG.
I would certainly discuss it with his doctors if he is still having symptoms after the IVIG.
Hopefully this trend will continue. :-)
You're welcome. Hope all works out for the best for you and your husband.
If you have any additional questions, let me know and I would be glad to help further. If not, please don't forget to provide a positive rating.
Hi Kathie. How is your husband doing? Were you able to call Dr. Vu's office for more information?
That is a great idea and more information than I was able to obtain on line---I will try and get an appointment with Dr Vu as you suggested-
Thanks for chatting with me--I have some good info from you---have a great day--Bye
Hi Kathie. You indicated I was a big help to you, but you did not provide a positive rating.
It's not too late. :-)