CIDP and the Covid Vaccine

Thanks Colleen.

My name is Sofia, I have Autoimmune disease Ankylosing Spondylitis. My blood test result for HLA-b27 : Negative.
My Rheumatology give me My fortic 180 mg to take daily only once in a day.
The side effect of My fortic are : my blood pressure unstable, headache, stomach ache n diarrhea.
Since the result was Negative, I did blood test once again for HLA- b27 to make sure about my AS.
Do I have to keep taking My fortic onve in a day since my cervical bone still very painful and stiffness.
Would you mind to help me answering my question Dr Collen Young.

Hi Sofia @sofiaindayani -- I would like to add my welcome to Connect along with @colleenyoung. None of us here on Connect can offer medical advice on whether you should keep taking your medications prescribed by your rheumatologist. You really need to discuss this with your doctor or rheumatologist as Colleen mentioned in her post here: https://connect.mayoclinic.org/comment/626195/

Hi Sofia, I am not a doctor and am not qualified to answer your questions as a health care professional. Should you wish to consult with a Mayo Clinic expert, you can request an appointment here: http://mayocl.in/1mtmR63

If you are already a Mayo Clinic patient, you may wish to post your questions to your team on the patient portal.

See this information from Mayo Clinic, recommending which side effects require medical attention:
- Mycophenolate (Oral Route) side effects https://www.mayoclinic.org/drugs-supplements/mycophenolate-oral-route/side-effects/drg-20073212

At 65, I was diagnosed with CIDP in 2019. I started with neuropathy in my left toe and subsequently - 8 months later - I had a rapid neuropathy advance to my right foot and right shin. I believe this was caused by a series of life stress events that hit me concurrently in a 4 week period. I developed a significant drop foot in my right foot. I had 16 weeks if IVIG treatments and 5 weeks after the last IVIG, I had Exosomes injected into my right leg which caused the drop to go away! Fatigue was an issue with me and I was prescribed Amantadine. Here is the COVID key!! Amantadine is a wonderful drug for COVID symptom relief. Google it! I remain unvaxxed - and confident! Mayo did an exceptional job in providing me with IVIG treatments. Blessedly, my CIDP has not advanced.

I found this thread because my friend was diagnosed with CIPD. He was 65. I don't know if he got his vaccines before or after his diagnosis but he spent 3 weeks in a hospital and was in a coma for at least a few days - maybe a week? Anyway, he just passed away a few days ago..... be careful out there.

Welcome @putridboy, I know how difficult it is to lose a close friend especially in these times. We lost one of our neighbors this past week to COVID. He had a form of leukemia and had underlying heart problems. He also had both COVID vaccines and the booster. Be careful is very good advice, especially when you have autoimmune conditions.

Hello Dillinger,

I have severe neuropathy in my hands and forearms from CIDP. I feel quite lost on the whole experience, so I'm looking for help. You mentioned your husband has only minor issues now. I'd love to hear his story and what he did to recover. Thanks, Fin

Hi Fin @fintown, Welcome to Connect. I'm not sure @dellinger is still following Connect. The member has not posted since starting this discussion. There is another active discussion where members are sharing their stories of CIDP that you might find helpful:

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy): https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

Has your doctor suggested or started you on any treatments?

I'm glad you are doing well! Thank you for sharing the information about amantidine. Was amantidine prescribed because you had Covid? Did your Mayo neurologist prescribe it?