Visit to the Rheumatologist

I am glad that you were able to access those comprehensive tests. Did your doctor specify the “something else” ?

My immediate concern would be GCA as yours probably was. Have the doctors discounted that completely?

I would want to know what they were looking for. When my blood pressure was giving consistently different readings in each arm, I was sent for an MRI Scan and I was told that they were looking for Aortic Stenosis, which thankfully they didn’t find. I would ask straight out, what the doctors think your symptoms mean.

When I had intermittent jaw pain a couple of years before my PMR diagnosis, I was sent for various tests on my heart function, including being monitored as I went about my normal life and overnight in hospital. Again nothing. Some things remain a mystery. Good luck!

It could be GCA - but it could also be another form of vasculitis which commonly affects the sinuses and causes chest infections.

I have GCA and jaw pain is a symptom as is sinus problems - if the GCA is in your sub clavian artery it runs up the neck and can cause sinus problems I am told.

Are you taking steroids? If so they usually alleviate symptoms initially.

I was diagnosed using a PET scan but now some people do an ultrasound scan of your temples - and also I had under my arms (armpits) and it was clear from that.

Have you had blood tests? High ESR/CRP can be an indication.

I had similar, though I had never heard until now that sinus can be a symptom of GCA. But it fits. Dec 2016 massive pain in jaw, sinuses. ( Never had sinus in my 62 years). Off to the dentist to check wisdom tooth or possibly root problems, all clear. Off to the dr - antibiotics. All good for a month, then returned worse than before. More antibiotics, no improvement, then BOOM! PAIN!!! Headache I couldn’t jump over, jaw pain, sinus pain, neck pain, ambulance to the ER, cat scan, major sinus infection again, blocked packages, growth in one of them, suspected cancer, steroids prior to surgery to clear infection. Surgery Feb 2016 was miraculous, all fixed, no cancer just nodule. WINNING! But then.....slowly slowly over the next 15 months more aches and pains, weight loss, fevers, more headaches, neck aches, drooping eye, visual disturbances, back issues, jaw pain, tender scalp, hips, legs, arms felt like I’d been used for target practice, frozen shoulders etc...you name it I had it, and it took until June 2017 and immobility for the diagnosis of PMR/GCA. I often wish I had all the symptoms hit me at once instead of one at a time because then perhaps the diagnosis would have been instant, instead of taking 15 months of torture. 50mg pred sorted that out pretty quickly though. Now have successfully tapered down to 8 mg since June 2017 using the DSNS method since reaching 12 mg because at that dosage the body started to complain again. Right now on 8mg I’m starting to have a few symptoms return but it could also be side effects from another new drug I’ve recently started for severe osteoporosis. I increased the pred to 20 mg for 3 days with no improvement so it looks like I’m stuck with these symptoms while I’m on the Prolia. Now I’m back on 8mg pred and will reduce again in a few weeks. It’s a balancing game and not one I want to muck around with, given GCA is so tricky. Good luck, I hope you find your answers sooner than I did.

Thank you for the "heads up". I will keep an eye on things. You are a sticky spot where the your Adrenals are going to have to start working again. Go slow and carefully. Good luck and fingers crossed for us both.