CIDP and the Covid Vaccine

Posted by dellinger @dellinger, Mar 18 2:02pm

My husband has the auto immune disease. While he had severe neuropathy problems years ago, his problems are minor now, but this is chronic and can be triggered again. His Doctor really can't say whether the vaccine could trigger his CIDP. Anyone have experience with this situation? Thank you.

@francescazama

There are different forms of neuropathy. One doctor said (after EMG a year ago) that it was probably not neuropathy. My concern is getting the second dose.

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@francescazama I completely understand. Since you haven't been diagnosed with CIPD or neuropathy, I would invite you to consider joining one of these discussions that may allow you to better connect with members whose experiences align with yours.

– To Vaccinate or Not, That is the Question:
https://connect.mayoclinic.org/discussion/to-vaccinate-or-not-to-vaccinate-that-is-the-question/
Since the symptoms you mention are also experienced by members with neuropathy, this may also be worth reading through and joining.

– COVID Vaccines and Neuropathy:
https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

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Amanda!
Thank you So much. I will read the links and I also have another EMG next week which may shed light. So far, no diagnosis and I am just worried about getting the 2nd dose if that would cause things to kick in more.

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I did get the vaccine and was terribly unsure about it because of the CIDP but did it for other reasons. Since I got the vaccine I have been in constant and almost unbearable pain, more in my arms than anywhere as that is where my symptoms are the worst. The pain basically never stops and the symptoms began within 8 hours of getting the vaccine. Talk with your Neuro before doing anything and share the concerns you have. I know a recent exemption came out for those with CIDP but since this can be linked it is worth looking into further prior to getting the vaccine. What does seem to work to assist with pain relief is the "Float" or epsom salt bath at a spa. That seems to be the only thing that I have found that helps. Hope this is helpful to you all. Wishing you luck.

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In August 2019 I had an acute onset of GBS, thought to be related to campylobacter jejuni, and spent two weeks in the hospital and following plasma pheresis left the hospital in a walker. Since I was not getting better consulted another neurologist who thought that my GBS had morphed into CIDP and thankfully started me on IgG which I have responded to very well and now am almost 100% after 2 1/2 years. Fearful that the Covid vaccine may reverse my recovery back to my prior August 2019 physical state I hesitated to get the vaccine but with hardly any reports of acute demyelinating neuropathy adverse events I decided to go ahead since I couldn’t live in constant fear of the non-masking and non-vaxing public. Received the first Pfizer shot in April 2021 and the second shot later and I am happy to report that I had no acute or chronic problems with either injection. Now contemplating whether I should challenge myself again and get the third booster shot.

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I have CIDP and have had all three Pfizer shots snd have had only mild reactions that a couple of Tylenol took care of.

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I got my second Moderna shot on March 11th of this year. My birthday. Happy birthday to me! The following six weeks consisted of a persistent weakening in the legs, such that I was having difficulty getting up the stairs in my condo. In addition, I was also vomiting two to three times a day, and within that six lost approximately 20 pounds. I was teleworking three days a week and expected to show up at the office the other two. Towards the end of the six weeks, I was calling in a lot, asking if I could work remotely, as I could barely walk. My employer's patience was running out. When I did get in to see my PCP, she barely recognized me. She said I looked like an old woman, skinny, hunched over, walking in on a cane, when previously she'd seen me as young and vibrant. She referred me to a neurologist who (if I recall correctly – my brain got really foggy around this time) initially diagnosed me with GBS, but did schedule me for IVIg outpatient treatment. Well, that didn't work out very well. My blood pressure shot up to 220 over another ungodly high number and the outpatient facility was not set up for that type of medical emergency. The IV was removed and I was transported to a local emergency room for admission to the hospital. I spent a week in the hospital, most of which is all a blur in my memory, receiving the first week of IVIg treatment. That was in early June. After discharge, I spent most of the summer off work, on FMLA, and at my mother's home in Florida, where I worked hard on getting "well." I spent my time in the pool, swimming as much as I could, and then sleeping. So passed the summer of 2021. September took me home and back to work again. October and November both saw additional weeks of IVIg treatment, and the start of physical therapy, which brings me to now. I'm really frustrated. I can't button clothes, which means everything I put on is in the frumpy zone. I'm not sure if I'll ever be able to wear heels again. I can walk without the can, again, which I know to be progress, but it's not like I'll be running any marathons soon. My hands and feet are numb and tingle (more like vibrate) all day and all night, such that my entire body is constantly "thrumming." The only time my body does not feel like that is if I am completely still, almost to the point of not breathing. My work feels as though these treatments, my whole time off work really has been a big inconvenience. If I had all this to do over, I would have never gotten those stupid vaccines. And I just found out I have to go take the test for COVID again anyway because the man I love tested positive two days ago. So all of this has been in vain.

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