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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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I am so sorry to hear of your jaw pain. I had some needed dental work, and because I could not open my mouth wide enough, I had to get Botox injected in my jaw muscles - at MY Cost of $1,400. Insurance does not cover that! And now I see that Prednisone may cause cavities! I am pretty angry that doctors just throw Prednisone at patients without a serious discussion of possible side effects. Our "corporate owned" doctors are so overworked and I think our medical system is in big trouble.
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2 ReactionsYour experience was similar to mine, except it sounds like I had worse problems at the start. I had undiagnosed PMR for about 7 months, and then PMR and GCA symptoms for about 5 months. The GCA symptoms were low grade fever, night sweats, facial pain, tenderness around the ears and on my scalp, a lot of fatigue in my jaw muscles when I was chewing, and eventually vision problems in one eye like you had. I also had the 3 daily IVs of 1000 mg of methylprednisolone, followed by 60 mg of prednisone along with weekly injections of Actemra.
My diagnosis was about 20 months ago. I haven't had any symptoms or flares of the PMR or GCA since then. I suspect your problem is most likely TMJ. I know that my PMR and GCA have been very well controlled by basically the same treatment that you are receiving. Naturally you should be very alert to any other symptoms, such as fever, weight loss, hearing or vision problems, etc.
What kind of pain are you having with your jaw? I never had any pain with my jaw when I had GCA. I had extreme fatigue when I chewed food. I was starting to dread meals because of that. The GCA was narrowing the arteries that supply blood to my jaw muscles, parts of my eyes, etc.
@jeff97 -- Thanks for taking the time to reply with this reassuring report of your experience. With the exception of this jaw pain, which I feel when eating (sometimes) and brushing my teeth (always), I've been feeling quite well on the diminishing dose of prednisone and actemra infusions. Because the jaw pain was the main GCA symptom, it does trigger some concern; but I have to say that I've been having this pain for many months, even when I was on the high doses of prednisone. I was also diagnosed with Lyme disease last fall (result of a blood test done by my rheumatologist when I was first worked up for the GCA/PMR) and given antibiotics. Though I hadn't hadn't noticed any symptoms related to that, I did read that Lyme can cause jaw pain. It was all part of a very confusing picture at the time.
My rational brain agrees with you that this is likely TMJ related pain, and it does help to have your perspective to fortify me when anxieties arise.
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1 Reaction@prettypatti76 -- Thanks for caring ... and for sharing your (expensive!) experience of getting a Botox injection. Is that crazy, or what???? I have heard that there are injections that might help with jaw pain, but I have no idea what kind of specialist provides that kind of service ... should it come to that for me.
@sharond7 Are you seeing an ophthalmologist regularly? I saw one every 3 months during the time I was taking prednisone. It was very reassuring to me to know that the blood vessels in my eyes were staying healthy and had recovered from the GCA. In addition to monitoring the GCA, the ophthalmologist can make sure prednisone isn't causing problems like glaucoma and cataracts,.
Yes—next appointment in April.
Sharon7 I think your jaw pain is a mechanical problem. I have learned by reading on this site that some of our latent problems become more pronounced with the onset of PMR. I’m no doctor but it sounds like your treatment should be addressing the GCA appropriately, I don’t blame you for being over concerned.., I would be as well.
Best wishes to you!
@caroljeand -- I really appreciate your response to my inquiry. Your sense that my treatment should be addressing GCA/PMR is reassuring to me. And I'm not sure I've heard as clearly before that "latent problems" could become more pronounced. I have definitely experienced the return of some of my familiar aches and pains with the reduction in prednisone from those massive doses. If I had jaw pain before, it wasn't asserting itself as it is now ... but I have arthritis in several other body parts, so why not this one?! I'll keep pursuing treatments for a mechanical problem while giving thanks for the peace of mind that comes from the perspective of fellow travelers on the GCA/PMR journey.
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2 ReactionsRecently 6/26 diagnosed with GCA- frequent headaches, jaw pain, night sweats, left femoral artery swollen & tender, no appetite, etc. Put on 60 mg prednisone a week ago. Awaiting temporal artery ultrasound to confirm diagnosis & see if biopsy is needed. Think prednisone helping but been waking up 5 nights in a row around midnight & 1 a.m. with horrible jaw pain & awake rest of night. Taking 1 Tylenol for pain. Rotated ice packs & heating pad around jaw but pain still significant at night . No TMJ issues. Used travel padded pillow horse collar around my face & jaw which helps support my neck & jaw at night-- like a big hug! Will probably start Actemera after ultrasound report back. Was told jaw pain result of GCA not prednisone. If anyone has tips to help with jaw pain, would appreciate it! Newly diagnosed and very healthy 72 WF all life so this is weird & scary diagnosis & pain. My number one priority is to do everything possible to preserve my vision!!! I put big sign on my mirror "I AM GETTING STRONGER & BETTER EVERY DAY!!!" Thanks.
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1 Reaction@nogiant54 It's strange that your jaw pain is continuing. I have GCA and PMR, and I had jaw claudication when I chewed food. I didn't have much pain when I chewed, just severe fatigue in my jaw muscles. I had some vision problems too, so I had 3 daily IVs of methylprednisolone before starting on 60 mg per day of prednisone. All of my symptoms were gone within 12 hours of the first IV, and they never came back.
What time of day do you take your prednisone? I wonder if your prednisone dose could be wearing off by 1 am. Maybe you could try splitting your dose, say 40 mg in the early morning and then 20 in the afternoon? Otherwise, you might need 80 mg per day of prednisone or more to help relieve your pain. That would be brutal, but it sounds like your current dose isn't lasting all day or else is insufficient. I found this quote in this article https://emedicine.medscape.com/article/332483-treatment about prednisone dose -
"Prednisone doses of 80-100 mg/day have been suggested for patients with visual or neurologic symptoms of GCA. [78] " I think jaw pain is considered a neurological symptom. The higher prednisone dose would help to protect your vision also.
The Actemra will help, but that can take up to 3 months to take full effect, once you start taking it.
Good luck! I hope you get relief soon.
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