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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)Comment receiving replies
It’s Captainkenny. Have not been active on Mayo Connect for several months now for a couple reasons: GCA (temporal arteritis) sharing morphed into lots of exotic autoimmune diseases beyond my interest, and I was really turned off be several posts from obviously non-medical professionals, offering medical advice, which is irresponsible.
I was fortunate to have been quickly diagnosed and confirmed by biopsy with Temporal Arteritis only two weeks after my symptoms—headaches, tender to the touch forehead and temples, and jaw pain so intense I couldn’t chew my cereal. That was 16 months ago. Started on 40 mg Prednisone and symptoms were gone in 2-3 hours without return, except for two minor headache scares. Now down to 7 mg Prednisone and Methotrexate, see RA every 4 months and blood lab every 3 months. I’m 82 and workout at gym most days and walk an hour every day, so I’m grateful exercise doesn’t cause me problems because it’s been an important part of my lifestyle for many years. Good luck to all you GCA afflicted and stay positive.
Replies to "It’s Captainkenny. Have not been active on Mayo Connect for several months now for a couple..."
Welcome back, @captainkenny. Like @johnbishop said, Connect is a place for patients to connect and share experiences. So states the disclaimer https://connect.mayoclinic.org/page/about-connect/tab/disclaimer/
“All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.”
Having said that Connect clearly demonstrates the value of connecting with other patients to find you’re not alone, help problem-solve, learn new coping strategies, find trusted health resources, recommend care providers and so much more. Glad to have you contribute to the meaningful exchange.
How incredible that prednisone helped alleviate your pain within hours. Is the goal to maintain control of the pain with continued use of prednisone or is the hope to be able to reduce the dosage further and even discontinue using it?
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Hi @captainkenny, I'm glad you you came back and joined the conversation. Like you mentioned, none of us here should be offering medical advice - we are not doctors or medical professionals. All we can do is like you said is share what treatments work for us and learn as much as we can about our own health condition. Thanks for coming back into the discussion.
John