← Return to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

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@wncard

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.

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Replies to "Kim, pulse steroids means I take two large doses a week rather than small doses every..."

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.