CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

@wncard Welcome to Mayo Clinic Connect! What symptoms led you to the doctor for a diagnosis? Gosh, I have lots of questions about your autoimmune disease, but, maybe instead, you could tell us a little about how CIDP affects you. Would you mind?

Thank you for asking. My primary autoimmune disease- CIDP (chronic inflammatory demyelinating polyneuropathy) started during the COVID 19 pandemic as I served in various hospitals as a healthcare chaplain. I was also diagnosed with Idiopathic pulmonary fibrosis and diabetes. Before 2019, I was healthy, working full time in my chosen profession, and living a full life without restriction.

Today, the disease leaves me unable to walk without a cane or walker. I use a wheelchair for distances. I am on sabbatical for now. This illness has affected my life profoundly. Accepting that CIDP is a chronic lifelong illness is overwhelming. The restrictions on mobility affect everything. The disability to engage in the life I once lived affects everything else. I can imagine that people who have an autoimmune disease, and those who care for us, could say this nightmare of a sickness is that bad.

On the other hand, my prognosis looks good. My faith is strong. My resolve is firm. I am responding to a combination of IviG and steroids. Physical therapy is ongoing. I am adapting to a new life with my illnesses. I am getting stronger and looking forward to working again when I am able. My family are my champions and are most supportive.

How has CIDP affected me? In a word, “loss.” I have a newfound empathy and understanding for people who experience loss. I have cared for people who experience material, relational, functional, role, cultural, social, and societal loss from illness and other calamities. I thought I knew, or grasped, loss before my own struggle. Because I cared for people with broken bodies and hearts, I thought I could feel their pain in some way. I really did not grasp the depth of emotion and pain others experience when faced with life changing illnesses like CIDP. Although my heart and head were in tune with my care for others, now I see them, and their struggles, a bit more clearly from experiencing my own losses.

Loss is a great teacher. I am learning that each morning is a gift, each sunset a wonder and every breath a celebration- experiences I took for granted far too long. I am keeping a positive outlook and am thankful for the health I do enjoy.

I have had CIDP since 2009 and it has slowly taken over my left hand side of my body.
It has become very active since I had the 2 x covid injections plus the booster.
Both my legs are very painful.....I have just had 5 days in hospital for intravenous solu medrol....
with no improvement...I am seeing my dr this week who will do a further 5 dys......question......
could this activity have been accelerated by the covid injections??????????
What is pulse steroids?

Kim, pulse steroids means I take two large doses a week rather than small doses every day. We are trying to combine IG infusion with limited steroids to lessen the number of infusions and keep my glucose under control. I've gone from four days of infusion per month to two days! So far so good. The change helped influence my insurance to keep paying for the Immunoglobulin. I don't know if this plan of care is common. If I did not have the diabetes then perhaps I could be treated with more steroids. Does covid or the vaccine cause or exacerbate neurological disease? I don't know. I do know from my own experience that prior to three vaccines, booster and being close and personal with covid patients in my hospitals for over three years my underlying preexisting issues exploded into full blown CIDP, idiopathic pulmonary fibrosis and diabetes. It seems to me that covid and/or the vaccine latched on to the most vulnerable areas in my body and took over. My neurologists have said I likely had asymptomatic covid. I do suffer "long hauler" symptoms now. Both have said they are seeing more and more patients like me- in healthcare who were essential providers, with neuropathies. There is at least one recently published paper that cites a case of covid vaccine caused CIDP. (I'll post a link on another post ) It is well documented that in the 70's the H1N1 flu vaccine caused Guillaume Barre- the non chronic form of CIDP. my last vaccine was a combined flu/covid. However, from my reading and understanding, it seems unlikely that the RNA Covid vaccine or the flu vaccine caused my illnesses. All that said, who knows and does it really matter? There is no recourse for us with anyone regarding the vaccine or Covid as far as I am aware. The powers that be locked that down tight. We are on our own. I don't mean to be negative- just realistic. So, did your preexisting CIDP flare after the vaccine? Mabey. Did you get exposed to the virus? Mabey. My plan of care and resources would not change if it proved to be true for me. I have a colleague who worked with me in the same settings, same job, same time, similar preexisting issues, age, etc. I mean same, same. He has CIDP, liver cerrossis and diabetes. Not a coincidence, I think, and he's dying. Perhaps in the years to come as more cases present and more facts are uncovered we will have an real answer to our questions. In the mean time, know that you are not alone in your struggle and I appreciate you for sharing your story. The opportunity to express my own struggle is welcome and helpful to me. I hope that in some way I can be supportive of others as we live with our illness. I am very interested to know how your CIDP developed since 2009 and about your care. CIDP is such a rare disease. If we who have it can share our experiences perhaps we can make better sense of what has happened in our lives because of it. Please comment or message if you like.

I have been getting IVIG infusions every 2 weeks for the past year. My doctor says the EMGs and other tests show improvement in the nerves. Unfortunately, I continue to feel worse with pain, weakness and fatigue. I am not confident that the diagnosis of CIDP is accurate (although I think my neurologist is very qualified). I asked him about plasmaphersis (plasma exchange) and he did not have good things to say about it - the process takes everything like vitamins and other elements - are stripped out of the blood. I've read that the entire process includes replacement of some things that are necessary in the blood so I don't understand.

Hi there, thanks for your in depth reply....very interesting. I think it started with stress. Initially doctors thought it was carpel tunnel then tennis elbow, then a neurologist put electro pads in the areas and said this is a neurological problem and sent me to the government hospital to see a professor who specializes in CIDP. He confirmed and I then went on a course of cortisone orally....it went into remission and flared up in 2015 and I went on solu medrol for a week. It then was all good till now. In the meantime my left hand side did deteriorate over the years and my muscles lessened in function and today my lhs arm is 100% non functional....now its moved to my legs left dominant right progressing....I now get 5 dys of solu medrol over a cycle and am not in so much pain but still not feeling great....full of meds and feel very tired...next course is on the 26th June....

I'm so sorry about your colleague. I developed sensory and motor polyneuropathy after the Covid vaccines. I have not had Covid. I was initially monitored for progression to CIDP and offered the pulsed prednisone infusions. However, my condition continues to improve. There are thousands of patients who suffered neurological injuries from the Covid vaccines who are members of two Facebook groups, e.g. Neuro V Long-Haulers. The V is an abbreviation for vaccines to avoid the Facebook censors in collusion with the government. The government is currently being sued for silencing the vaccine-injured.

Sadly, the IVIG it hasn't worked for me. This second relapse, the prednisone did not work either and my internist took me out of it, since my blood values were a mess. Now without any other treatment I am getting worse. has anybody tried Plasmapheresis?

Hi, when you say infusions for 5 days, are they done in a Hospital? are they intravenous? 5 days in a row?

I have been asking my Neurogist Dr. for the plasmapheresis, but she doesn't want to prescribe it to me because it implies to be 10 days hospitalized. was that your case? did the plasmapheresis help you?