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Polymyalgia Rheumatica and Giant Cell Arteritis - Sue's Story

PMRGCAuk

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Sue experienced aching arms and a tired jaw months before diagnosis until a sudden overnight stiffness in her neck, shoulders, and hips made her GP realise it was PMR. Three years later she was diagnosed with GCA. She tapered her steroids and flared several times. 8 years on from her first diagnosis she is frustrated she can't do everything she likes but refuses to let the conditions rule her life and keeps as active as she can.

PMRGCAuk is a charity raising public awareness of the conditions Polymyalgia Rheumatica and Giant Cell Arteritis. We promote understanding of the illnesses, their diagnosis, treatment and continued care in the medical profession.

We have a nationwide distribution of patient-led groups to support people with PMR and GCA. You can find information about your local group here: https://pmrgca.org.uk/get-support/gro...

Website: www.pmrgca.org.uk
Facebook: facebook.com/pmrgcauk
Twitter/X: @pmrgcauk
Office: 0300 999 5090
Helpline: 0300 111 5090

5 Comments

@JJ-vc6pp 2 months ago

This is an excellent self reported case history by someone with great insight and knowledge of the conditions of PMR and GCA. You provide deeper, more nuanced, integrated and informed overlapping symtom pattern descriptions than many doctors' understand, all of which concurs with, and informs on my own, ongoing, 4 year journey with both conditions. Thanks for sharing and I hope you are in remission and managing well. Regards from Australia.

@janeshipley6993 1 month ago

thank you for this. with extreme shoulder, knee, and hip pain, it took about 7 doctors and 4 np’s or pa’s to finally get my diagnosis of pmr. with jaw pain, inability to open my mouth, vision changes, and hearing loss, i’ve been told finally, after seeing 4 doctors, that yes, i might have gca. i understand doctors’ hesitance to prescribe prednisone, but this has been utterly deflating.

@user-hi8rg7bl2s 1 month ago

Thank you for sharing your experience in detail and your care in sharing with us. It does not sound like what a rheumatologist predicted about 12-18 months is necessarily accurate, at least with arteritis and/or vasculitis. Sigh.
I pray for patience and protection from the negative side effects of treatment for each of us patients.

@Thinkforyourselves64 1 month ago

Dear Sweet Lady, the question is, what is causing the inflammation? Find a good functional medicine expert (not necessarily a physician) and get tests run. It may be as simple as eliminating gluten or dairy or sugar. Blessings to you!😊