Jim-LA
Your Replies
-
February 22, 2023 at 3:55 pm
There are plenty of discussions here about ‘live’ vaccines and most can trigger GBS/CIDP. The newer technology mRNA vaccines are considerably less likely to trigger GBS/CIDP. Search by keyword to find the discussions.
A little more about PE – The terms Plasmapheresis, Apheresis, and Plasma Exchange (PE) are often used interchangeably; however, they are not the same. Plasmapheresis removes a smaller amount of plasma, usually less than 15% of the patient’s blood volume and therefore does not require replacement of the removed plasma.
PE is the procedure that is performed most commonly for GBS/CIDP. A large volume of plasma (over 60%) is removed from a patient. The volume removed is such that if it were not replaced, significant hypovolemia resulting in vasomotor collapse would occur. As a result, the removed plasma must be replaced with some form of replacement fluid such as albumin. It takes 3-4 PE’s to get out the majority of the antibodies that are responsible for the GBS/CIDP.
When I first underwent PE, I saw the plasma they had removed (I had to ask to see it as they hide it from you). I was astounded by the size of the plastic bag it was captured in, maybe 3 gallons! It was coarse looking and dark, almost black in color. After a number of treatments, the fluid was yellow and transparent.
It should be noted that PE will cancel out IVIg/SCIg and Rituximab. Ig will cancel the effects of PE and seriously reduce the benefit of Rituxan. So, the order of treatments would be important for the best results.
Some of my first-hand experiences with PE may be of interest to those considering it:
https://forum.gbs-cidp.org/forums/topic/plasma-exchange-times
August 31, 2022 at 3:57 pmAlthough there seems to always be improvements, it varies and residuals can remain for many years. If your dad had the disease for a couple years untreated, there could be more residuals he would have to deal with.
August 29, 2022 at 2:39 pmHere is a link to a good IVIg/SCIg dosage calculator. You can use the results to discuss with your Dads doctors:
August 28, 2022 at 1:23 pmHere are two forum discussion links to some info that may help:
Reaching out for my husband, who has been in the hospital for 5 weeks.
July 30, 2022 at 2:32 pmMore info about MMN can be found here:
July 24, 2022 at 4:41 pmI’m sorry to hear IVIg has stopped working for you. It never worked for me. There are some alternatives to consider and many are suggested in the following thread:
July 24, 2022 at 2:50 pmYou can view your own ‘replies’ or ‘topics’ by clicking on your user’s name, then selecting either “replies created” or “topics started”. Then you can scroll through these and find a post of interest. Clicking on the ellipse-like symbol on bottom right will take you to the thread. You can also do this for any other user name too. There are some slight differences in how this works if you are not signed-in.
Unfortunately, I don’t know a way to search within a user name for posts on specific topics. I often wish we had that capability.
July 23, 2022 at 1:51 pmPammy, the ten-year-old article you cited was from the Arizona Institute of Footcare Physicians. The same organization participated in the clinical trial I cited. I would personally place more importance on a study that included the participation of neurologists knowledgeable in CIDP (or as a minimum, PN).
July 22, 2022 at 8:20 pmHi Pammy, the clinical trial for this possible pain treatment was “terminated”. This would mean it didn’t work as expected for diabetic peripheral neuropathy. You can review the clinical trial here:
https://www.clinicaltrials.gov/ct2/show/NCT04006392
If anyone has experience with this laser technique or something similar, please chime-in.
June 14, 2022 at 1:35 pmYou have a CoE about 40 miles North of you, Johns Hopkins University Medical School here: https://www.gbs-cidp.org/gbs_cfe/johns-hopkins
And the renowned Dr David Cornblath heads the list of specialists there. But I would first explore the possible Lyme connection as Ron suggested (based on his hands-on experience).
June 13, 2022 at 9:56 pmComplicated diagnoses need to be done by a Center of Excellence where CIDP and its variants are well known. What city are you in?
May 28, 2022 at 3:09 pmA little more about PE – The terms Plasmapheresis, Apheresis, and Plasma Exchange (PE) are often used interchangeably; however, they are not the same. Plasmapheresis removes a smaller amount of plasma, usually less than 15% of the patient’s blood volume and therefore does not require replacement of the removed plasma.
PE is the procedure that is performed most commonly for GBS/CIDP. A large volume of plasma (over 60%) is removed from a patient. The volume removed is such that if it were not replaced, significant hypovolemia resulting in vasomotor collapse would occur. As a result, the removed plasma must be replaced with some form of replacement fluid such as albumin. It takes 3-4 PE’s to get out the majority of the antibodies that are responsible for the GBS/CIDP.
When I first underwent PE, I saw the plasma they had removed (I had to ask to see it as they hide it from you). I was astounded by the size of the plastic bag it was captured in, maybe 3 gallons! It was coarse looking and dark, almost black in color. After a number of treatments, the fluid was yellow and transparent.
It should be noted that PE will cancel out IVIg/SCIg and Rituximab. Ig will cancel the effects of PE and seriously reduce the benefit of Rituxan. So, the order of treatments would be important for the best results.
Some of my first-hand experiences with PE may be of interest to those considering it:
https://forum.gbs-cidp.org/forums/topic/plasma-exchange-times
May 28, 2022 at 2:00 pmI’m very sorry to hear about your husband’s condition, this is traumatic for you both.
Kaiser is not known for their expertise with GBS/CIDP or variants. A center of Excellence such as Cedars-Sinai in LA (Richard A. Lewis, MD) would probably not be covered under your insurance plan, but would offer the best diagnosis and treatment for your husband. There is also UCLA and UC Irvine.
Plasmapheresis (which in my opinion does little to treat CIDP) is not the same as Plasma Exchange. Please read about the differences here:
https://forum.gbs-cidp.org/forums/topic/please-educate-me-on-plasmapheresis
Rituximab is the treatment that put my GBS/CIDP/MFS into remission. You can read more about it, and possible sources of anemia, in the following forum thread:
https://forum.gbs-cidp.org/forums/topic/anemia-due-to-cidp
Here is a brochure with more comprehensive explanations of GBS/CIDP diagnosis and treatment options. It also goes into bladder and bowel related disorders:
May 8, 2022 at 3:45 pmStem Cell Therapy (AKA HSCT) is a controversial technique. I have spoken to some who had great results, more with less effective results. Dr Burt’s clinical trial was started in 2005 and appears to be on hold? Dr Georges clinical trial is still underway and has no results posted yet.
Personally, I would want to see a clinical trial on the Panama technique before getting it.
Please read the following forum threads for more details:
https://forum.gbs-cidp.org/forums/topic/sct
https://forum.gbs-cidp.org/forums/topic/cidp-hsct-clinical-trial-dr-burt-chicago
April 11, 2022 at 4:00 pmHere are a couple articles that will help boost your understanding of the disease and some of the treatment options available:
Additionally, you can search these forums using conditions for keyword searches.
