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Cytokine Release Syndrome/Polymyalgia Rheumatica

Autoimmune Diseases | Last Active: 3 days ago | Replies (13)
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@johnbishop

Hello @nuturecures, Welcome to Connect. I'm sorry to hear you haven't been able to find much help with your symptoms. I know it has to be really frustrating when the doctors don't seem to be listening to you. I have had PMR twice and was successfully treated with prednisone but I was not familiar with Cytokine Release Syndrome. @grandpabob, @loribmt and @carterbeauford have mentioned cytokine release syndrome associated with other conditions and may have some suggestions or information to share. While you wait for others to respond, I found some information that includes treatment and management of the condition if you haven't already seen it.

-- Cytokine Release Syndrome (CRS):
https://my.clevelandclinic.org/health/diseases/22700-cytokine-release-syndrome

You mentioned needing some guidance on how to talk to your doctor about your concerns. The Patient Revolution website has some suggestions and tips you might find helpful - https://www.patientrevolution.org/tools.

Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

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Replies to "Hello @nuturecures, Welcome to Connect. I'm sorry to hear you haven't been able to find much..."
nuturecures | @nuturecures | Jun 22 11:15am

Hello & thank you for your response, I currently live in Ontario Canada, If there was a Mayo clinic here I would have been there long ago LOL
I have saved these 2 links you have provided & will sit down later when I have more time & give this resource a good read.
I am in limbo At the moment as I am waiting for test results & further submissions for further investigation as to what's causing these issues & I have to state I never had these issues prior to the pandemic & the one shot of phizer vaccine for which no doctor wants to address, I have had much problem getting any specialist or Doctor to listen to my experiences since then. Even the immunologist was acting odd to me when I explained the issues stems from the vaccine I took. He more or less rushed me out of his office & stated there was nothing he could do for me & its been this way with medical professionals since I had the vaccine, its like no one will talk to me & they have all acted very odd with me when I try to discuss this.
Thanks so much for your response & resources to help me further.

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