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Dr. Bob
Dr. Bob, Neurologist (MD)
Category: Neurology
Satisfied Customers: 5431
Experience:  Neurology & Int Medicine (US Trained): 20 yrs experience
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Are there any neurologists in FL who specialize in CIDP

Customer Question

Are there any neurologists in FL who specialize in CIDP
Submitted: 1 year ago.
Category: Neurology
Expert:  Dr. Bob replied 1 year ago.

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

http://health.usf.edu/medicine/neurology/profiles/2838116/Tuan-Vu.aspx

Expert:  Dr. Bob replied 1 year ago.

Hi Kathie. Here is a link to one trial they are doing, in case you are interested:

https://clinicaltrials.gov/ct2/show/NCT02465359?term=cidp&rank=6

Customer: replied 1 year ago.
This is a big help. Do you know what they are doing? Or what treatments they are trying?
Expert:  Dr. Bob replied 1 year ago.

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. :-)

Customer: replied 1 year ago.
He might have had a severe drug allergy--we are not positive if it was to the IVIG so my husband is reluctant to try it again
Customer: replied 1 year ago.
He is just weaning off the heavy prednisone treatment for the allergic rash. Which was very close to being hospitalized.
Expert:  Dr. Bob replied 1 year ago.

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.

Customer: replied 1 year ago.
I have a phone made call to her nurse ( easier to reach ) about this possibility. She has not called back yet--I saw it on line but the new neurologist didn't mention this option last week. She said she could just try another brand---my husband doesn't want to do that. He has had more than a month of oral pred, plus two injections and pred cream twice a day so he is VERY reluctant to try that. Is the plasma exchange effective and possibly different so he might n or have that reaction ?
Expert:  Dr. Bob replied 1 year ago.

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.

Customer: replied 1 year ago.
How fast is is returned? Right during this visit?is there something else that is added to either treatment? Is it straight plasma?
This neurologist has another patient recently with a reaction and the dermatologist said it was suspicious that he had two patients recently with the same issue
Expert:  Dr. Bob replied 1 year ago.

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.

Customer: replied 1 year ago.
What risks ? Is it as safe as IVIG?
Expert:  Dr. Bob replied 1 year ago.

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.

Expert:  Dr. Bob replied 1 year ago.

I would certainly discuss it with his doctors if he is still having symptoms after the IVIG.

Customer: replied 1 year ago.
That is a great idea and more informaioni than I was able to obtain on line---I will try and get an appointment with Dr Vu as you suggested-
Customer: replied 1 year ago.
His symptoms are much improved with the pred treatments from his dermatologist. We were going in twice a week or so, to make sure there was improvement
Expert:  Dr. Bob replied 1 year ago.

Hopefully this trend will continue. :-)

Customer: replied 1 year ago.
Thanks for chatting with me--I have some good info from you---have a great day--
Bye
Expert:  Dr. Bob replied 1 year ago.

You're welcome. Hope all works out for the best for you and your husband.

Expert:  Dr. Bob replied 1 year ago.

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.

Best wishes,

Doctor-Bob

Expert:  Dr. Bob replied 1 year ago.

Hi Kathie. How is your husband doing? Were you able to call Dr. Vu's office for more information?

Expert:  Dr. Bob replied 1 year ago.

Customer

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-

Customer

Thanks for chatting with me--I have some good info from you---have a great day--
Bye

Expert:  Dr. Bob replied 1 year ago.

Hi Kathie. You indicated I was a big help to you, but you did not provide a positive rating.

It's not too late. :-)