Cytokine Release Syndrome/Polymyalgia Rheumatica

I too am frustrated with doctors that do not listen to me about my daily pains and not understanding what does not work and willing to work with me to try something new. Since you have rightly lost faith in your doctors have you search for other doctors. I all else fails, I would go to the emergency room, but not tell the ER doctor about the problems you are haveing with your current doctors. Most doctors are reluctant to counter the opinions of other doctors that have treated you. Good luck find solutions.

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?

I did go to the emergency also when I was having sever temple pain & visual issues but the attending physician stated she didn't feel that a temporal Biopsy was required because the blood work didn't show the minimal inflammatory markers to support such a procedure, so I thanked her & left.
Since then I have seen an ophthalmologist who is still investigating the possibility of GCA Presence, I had the blood work & am now waiting for an appointment to have an ultra sound on my eyes & arteries so that's something.
I just left my regular physician who I loved so much because she did what I needed her to do upon request, however she herself has severe health problems that interfered with her duties to a point I & my entire Family wasn't getting referrals fast enough in critical situations.
I really hated to leave her Practice, I even lectured her in from of her staff & in private about her ongoing health issues that posed a dangerous situation for her due to her heart condition & multiple surgeries on her back then return to work the following day as if nothing happened & told her she's no good for her patients if she isn't looking after herself.
NOW after I left her practice, she had a stroke.
This is heartbreaking, I seem to encounter physicians like this often & many are so over worked many are not fulfilling their obligation to the patient because Doctors are in distress themselves & this is a frightening trend to say the least.
I will wait to see the results of the tests my Ophthalmologist has ordered before I do anything else & will advice my doctor to halt any prescription drugs till all investigations have been exhausted & or he prescribes the medications I find would be more appropriate too my intolerance to high dose medications. Thank you for your response & Advice, its much appreciated.

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.

I'm sorry to hear this but you are not alone in not being heard. Our system is cookie cutter and getting very scary. Our good Drs are aging out now. My favorite quote for myself now that my eyes are opened is "too soon old, too late smart" meaning wish I had seen through it all much sooner. None of them will admit those Vax are causing slow deaths. One of my liver enzymes went up after the Vax no one will address it.

I'm wondering if some of the severe headaches you mentioned could be an indication of Giant Cell Arteritis (GCA). When my PMR was active my doctor and rheumatologist were always asking me if I had headaches, tender scalp or any pain in the temples or jaw areas. You might want to read through the following article to see if anything sounds similar.

-- Giant Cell Arteritis: Advances in Understanding Pathogenesis and Implications for Clinical Practice: https://www.mdpi.com/2073-4409/13/3/267

@tsc has some experience with GCA and may also have some thoughts.

I read that it's rare, but some people can have GCA without the usual high inflammatory markers, CRP and ESR tests. Here's an article that discusses it:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8900556/
In my own case, I've always had an elevated CRP and ESR when I've had GCA.
We often have to be our own advocates and just keep pressing our doctors for answers.

I am pursue this at this time just waiting for the MRI to check what's going on. The ophthalmologist doesn't believe its GCA but she does strongly suspect something is wrong cause she stated there is strange activity going on so will wait to see. My Fingers & eyes are crossed LOL
Also thank you for this discussion link.
I will be presenting this to my doctor.

Thanks so much 🙂

That's what I've been trying to get the rheumatologist & my Doctor & now the ophthalmologist to understand & they are sticking to standard protocols, it could be to rule everything else out, I am not sure cause they haven't stated anything to lead me to this conclusion. However, The Ophthalmologist has shown me a different set of thoughts on this even though she doesn't feel its GCA, however she's not entirely ruling out that possibility.
Till the blood work & MRI come back with the results, I cant really say or do much until then except pray & hope they find the causes.

Really interesting video that describes some of the complexities of guidelines used for PMR and GCA.

A bit of both? Hidden complexities in PMR and GCA - Dr Sarah Mackie - PMRGCAuk week 2024:
https://vimeo.com/957012453