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CIDP and concerns about treatment risk factors

Posted by casey1329 @casey1329, Jul 25, 2022

I'm very concerned because my 71 yr. old husband is to be treated for "Chronic Inflammatory Demyelinating Polyneuropathy" by Gamunex-C ( immune globulin) infusion therapy. Concern stems from the fact that my husband is older ( a risk factor mentioned by Gemunex), has high platelets 434 and Gemunex increases platelet levels. Lastly, my husband tends to get leg blood clots and Gemunex increases the risk for clots. Has anyone had experience with this type of therapy and what do you think about my concerns ? Thank you

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jamiemccorkle | @jamiemccorkle | Aug 21, 2022
In reply to @johnbishop "Hello @jamiemccorkle, Welcome to Connect. Thank you for being an advocate for your dad. I'm sorry..." + (show)
@johnbishop

Hello @jamiemccorkle, Welcome to Connect. Thank you for being an advocate for your dad. I'm sorry to hear his IVIG treatments have stopped working for him. We merged your post into another discussion on the same topic here - CIDP and concerns about treatment risk factors: https://connect.mayoclinic.org/discussion/cidp/ so that you can connect with other patients like @kimegraves @casey1329.

While we wait for other members who have been treated for CIDP at Mayo Clinic to share their experience, I thought I would share the following video with you.

" Jun 1, 2018 Dr. P. James Dyck and Dr. Peter J. Dyck, Neurologists from Mayo Clinic in Rochester, MN, dialogue about an article appearing in the June 2018 issue of Mayo Clinic Proceedings, which examines the “discovery” of Chronic inflammatory demyelinating polyradiculoneuropathy from its roots. The article provides and update on the current and best treatment options. " --- Chronic Inflammatory Demyelinating Polyradiculoneuropathy: https://youtu.be/eZL2wx4xQ08

Are you looking to get an appointment at Mayo Clinic for your father?

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Thank you for your response! We have a phone consult scheduled for tomorrow, so crossing our fingers for good news! His neurologist is leaving the state soon and has been negligent in answering our questions, unfortunately!

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elowe | @elowe | 4 days ago

I am new to the group. I am 68 and was diagnosed with CIDP on March 26, 2025 and will be starting IVIG in about 2 weeks. I have been very nervous about this due to reading about the possible side effects of this procedure. Has anyone had the Gamunex-C infusions and can you share your side effects if any. My CIDP came on suddenly in February of this year and I am currently using a walker to ensure that I can stay vertical. I am grateful to this support group for the information and encouragement that I have gotten from reading your posts as it has prompted questions that I need to ask when I go in for my treatment, but would not have thought to prior to reading this. Any comments or advice is welcome.

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2 replies
crnelson | @crnelson | 3 days ago
In reply to @elowe "I am new to the group. I am 68 and was diagnosed with CIDP on March..." + (show)
@elowe

I am new to the group. I am 68 and was diagnosed with CIDP on March 26, 2025 and will be starting IVIG in about 2 weeks. I have been very nervous about this due to reading about the possible side effects of this procedure. Has anyone had the Gamunex-C infusions and can you share your side effects if any. My CIDP came on suddenly in February of this year and I am currently using a walker to ensure that I can stay vertical. I am grateful to this support group for the information and encouragement that I have gotten from reading your posts as it has prompted questions that I need to ask when I go in for my treatment, but would not have thought to prior to reading this. Any comments or advice is welcome.

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I was on IgIv for approximately 2 years. The only thing I noticed that it helped was with the electrical shock feelings of pain. For that I am grateful. I then went on Corticosteroid for 12 weeks. I didn't see any improvement. Then I had two rounds of Rituximab chemo. I go back to my team of doctors at the Mayo Clinic the end of May. Hoping that they will advise me as to what I can do next.

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1 reply
elowe | @elowe | 1 day ago
In reply to @crnelson "I was on IgIv for approximately 2 years. The only thing I noticed that it helped..." + (show)
@crnelson

I was on IgIv for approximately 2 years. The only thing I noticed that it helped was with the electrical shock feelings of pain. For that I am grateful. I then went on Corticosteroid for 12 weeks. I didn't see any improvement. Then I had two rounds of Rituximab chemo. I go back to my team of doctors at the Mayo Clinic the end of May. Hoping that they will advise me as to what I can do next.

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Thank you for sharing your journey; I hope they find a solution for you when you go back. With my symptons I am experiencing weakness in legs, core & arms. I have numb sensation in my right outer leg and also have foot drop, so that poses additional risk of falling. I start the IgIv within the next two weeks and am praying to get some relief and strength back. Best of luck in May and I'll check in on you to see how it went.

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1 reply
crnelson | @crnelson | 1 day ago
In reply to @elowe "Thank you for sharing your journey; I hope they find a solution for you when you..." + (show)
@elowe

Thank you for sharing your journey; I hope they find a solution for you when you go back. With my symptons I am experiencing weakness in legs, core & arms. I have numb sensation in my right outer leg and also have foot drop, so that poses additional risk of falling. I start the IgIv within the next two weeks and am praying to get some relief and strength back. Best of luck in May and I'll check in on you to see how it went.

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I have foot drop too. I have fallen several times. Broke my nose, my back, shattered the joints in both big toes and the big one was broken femur just after a knee replacement. Had to go in for a knee replacement revision. It is not fun. Good luck to you!!!

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Mafalda | @mafalda | 14 hours ago
In reply to @elowe "I am new to the group. I am 68 and was diagnosed with CIDP on March..." + (show)
@elowe

I am new to the group. I am 68 and was diagnosed with CIDP on March 26, 2025 and will be starting IVIG in about 2 weeks. I have been very nervous about this due to reading about the possible side effects of this procedure. Has anyone had the Gamunex-C infusions and can you share your side effects if any. My CIDP came on suddenly in February of this year and I am currently using a walker to ensure that I can stay vertical. I am grateful to this support group for the information and encouragement that I have gotten from reading your posts as it has prompted questions that I need to ask when I go in for my treatment, but would not have thought to prior to reading this. Any comments or advice is welcome.

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Hi, I have been dealing with CIDP for about 5 years now. I have been in Prednison, Ivig transfusions, etc. The treatment that worked the best was physiotherapy. I cant emphasize enough how exercising the legs and arms made them strong and resistant to weakness. I was also lucky finding a physiotherapist that would strong massage the legs prior to exercise. That was a recipe for success.
But, I'm talking of serios exercising. I did it for a couple of hours DAILY! 24/7 for over a year, then I had 1 day off then 2 days off. keeping it at a five days a week exercising, weights, bands, etc. I got completely out of pain, imbalance, etc. Wish I know about this before!

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