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Hello Karen @karinaph, I would like to welcome you to Mayo Clinic Connect and thank you for the private message. I thought I would answer your private message in this recently created discussion PMR initial diagnosis: Can there be an underlying disease?. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to this discussion where you can meet other members discussing Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA).

You mentioned in your message that you have been diagnosed with PMR and they suspect you have GCT. You are currently on 14 mg of prednisone, tried to taper and symptoms roared back along with GCT. You also mentioned only being able to do Zoom calls with a rheumatologist and have not had any blood tests since Feb. It took me awhile to figure out what you meant by you feel like you are wallowing in the Sargasso Sea 🙂. I didn't know it's the only sea without a land boundary. That's a great way to describe the feeling when PMR or GCA is out of control…ouch!

I think you might find the post I created earlier in this discussion helpful – https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/?pg=1#comment-425216. @sharenb @desertsooner @joybringer1 @phoenix0509 and other members may have some suggestions to share with you also.

You also mentioned you were looking for some help in navigating the discussion board. There is a great Get Started on Connect guide that is available by clicking the link in the left column of the footer section on any Connect page. Here is the direct link to the guide – https://connect.mayoclinic.org/get-started-on-connect/

Karen are you also having pain in the temple area, jaw or scalp? Those are symptoms of GCA.

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Replies to "Hello Karen @karinaph, I would like to welcome you to Mayo Clinic Connect and thank you..."

Thank you John for your kind and thorough reply. Sorry for the biological reference, I studied marine biology and was Intregued that “sea” within an ocean is a little understood place in the Atlantic. As far as my symptoms, I’m keeping a sharp eye on the GCA stuff, as I know this is very serious. I did have jaw stiffness, plain, temple pain, scalp pain and immediately contacted MD and she upped by meds back to the 15. Pain subsided within a few days. The muscle cramping in weird places still plague me, and never know when it will hit. I just wish there were other “treatments” instead of steroids, but I dont’ want methotrexate…. I’ll check out your post and keep up on what others are sharing. I’m feeling like this was triggered by getting the Shingrix vaccine. Btw, I am not an antivax person. Trained in bilology, married to a research scientist, I trust science. But with that said, the symptoms came on quickly after the second vaccine… thanks again John.