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Ongoing jaw pain in established GCA/PMR patient
Hello everyone. I was diagnosed with GCA and PMR in September 2025 at age 70. My presenting symptoms were mild, right side jaw pain when chewing and (worsening) body aches from shoulders to knees.
My primary care provider put me immediately on 60 mg of prednisone, inflammatory markers were very high, and temporal biopsy confirmed GCA. Two weeks later, I had blurry vision also on the right side, so was admitted to the hospital and received three 1000 mg infusions of prednisone. Monthly Actemra infusions began in November. I already had osteopenia and had taken fosamax for 4 years from 2016 to 2020. I went back on fosamax, made significant changes to my diet, and increased weight bearing and strength training exercises. Tapering prednisone has been going well (I've been feeling good, and my inflammatory markers have stayed in the normal range).
I have one persistent symptom, and that is significant jaw pain ... still only on the right side and more painful than the original pain. My rheumatologist told me to consult with my dentist and primary care doctor who agreed it is likely a TMJ-related disorder. They gave me exercises, which I have been doing, along with self-massage and Tylenol ... all to no avail. I saw my rheumatologist again this week, and he looked at my temple and didn't see any swelling. He encouraged me to see someone for massage and PT. I saw a massage therapist who specializes in TMJ disorders yesterday and committed to 3 more weeks of massages, and I have a PT appointment schedule for later this month.
So, I am "all in" for getting help in treating my TMJ pain ... but I have this niggling concern about its connection to GCA.
-Could ongoing jaw pain be activated by the jaw claudication at the onset of GCA, but now be an "unrelated" symptom of a mechanical problem?
- Could ongoing jaw pain be a symptom of active GCA, suggesting a need to go back to a higher dose of prednisone?
- Is there any way to diagnose what the problem is so I'm not throwing whatever comes to mind at it to see if it works to alleviate if not "cure" this pain?
I have great respect for the wisdom -- informed by personal trials, hard won experience, and research -- of this community. I will be so grateful for your guidance.
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@jeff97 Thanks very much for your response. Am going to contact Rheum to see about dosage adjustment. Appreciate all your input & help!! Many thanks!
@jeff97
Many thanks for your help. Will contact Rheum for possible dosage adjustment. Many thanks for your response.
I’m 73 diagnosed with GCA. On prednisone and Actrema infusions. I had jaw pain prior to being diagnosed and was told TMJ. Went thru PT , dry needling etc which temporarily eased pain. Once on prednisone pain went away. As my prednisone dose has been lowered the pain has returned including temporal areas. Was down to 10 mg, then up to 15 and now 20, but my next infusion is tomorrow. Hoping that will allow me to lower again. Trying to find dosage to control pain. Good luck. 🍀
@nogiant54
Rheum PA added predisone dose of 10mg at 5:30 pm- total is 70 mg per day (3 - 20 MG in morning) . Night dose has definitely controlled jaw pain thankfully and feeling better! Still only getting 3 or 4 hours sleep probably due to predisone. Not sure when starting Actemra infusions.
(1) Any side effects from Actemra? Read they give you Zyrtex before starting Actemra - heard rash common side effect from Actemra.
(2) How long before taking Actemra does it start working? Hopeful predisone dose can be lowered after Actemra kicks in.
(3) Are GCA patients also seeing neuro opthamologist regularly? Thanks so much for your input!
@nogiant54 I'm glad the extra prednisone is helping you.
I took 5 mg of time release melatonin to help me sleep when I was at high doses of prednisone. It allowed me to sleep about 5 hours per night. I started sleeping ok once I got down to 40 mg per day, and I stopped using the melatonin. The melatonin made me feel groggy during the day, but it was worth it to me for the extra sleep.
I have been taking weekly Actemra injections for 2 years, and the only side effect I ever had was some minor fatigue the day after the injection. But that only lasted for the first few weeks.
Google says "Actemra (tocilizumab) typically begins providing noticeable relief and lowering inflammation markers within 2 to 4 weeks. However, full disease control and sustained remission often take between 3 to 6 months, and treatment is typically continued for at least one year." I think I will be taking Actemra for at least 3 years. I have been taking weekly injections for the past 2 years, but my rheumatologist just switched me to every other week.
I came close to losing some vision from GCA, so I saw an ophthalmologist every 3 months until I got completely off of prednisone after 13 months of treatment. The ophthalmologist monitored my eyes to make sure the GCA wasn't causing any damage, and also to make sure prednisone wasn't causing any problems. At one point the prednisone caused the pressure in one eye to get close to the level needing treatment, but the pressure went back down as I tapered the prednisone. Prednisone can accelerate the develop of cataracts, and can cause glaucoma.
Because of the high dose of prednisone, your doctors will also need to monitor your blood sugar, cholesterol, and bone density. My cholesterol got close to treatment level, but it also went back down as I tapered the prednisone.
Another issue for people taking prednisone is weight gain. I was careful with portion sizes, so I only gained a few pounds. But I still developed a moon face. You can get a lot of advice from this support group about diet and exercise when you're taking prednisone.
@nogiant54 GCA for nearly 1 year. Yes, regular appointments with Neuro Ophthalmologist in addition to Rheumatologist.
@nogiant54 I just had my 3rd monthly infusion of Actrema. First time I could tell a difference after infusion. Hadn’t noticed any side effects from Actrema but lately getting bad reflux issues. Could be from prednisone. 🤷♀️.
My ophthalmologist diagnosed GCA and I see him on a regular basis.
This is only me, and my supposition is probably way off base, but I had significant swelling in my mouth when I was on Fosamax for severe Osteoporosis. I got off it and the swelling went down. Last year I had a Reclast infusion and the swelling and pain has returned. They are both bisphosphonates. Not sure if I have a sensitivity to it, but it seemed so. When I recently was able to get off of prednisone the swelling went down. Same thing with numbness in my thigh. The numbness has resolved with the end of prednisone. The RA said I did not have GCA, but didn’t really check much, so I did have an eye exam. The Doctor said I have ripple in one eye, which could be a sign of GCA, but not in his opinion, as it does show up in people with farsightedness. So, there is my data, however off-base it might be. I hope it helps.