Connect
← Return to Ongoing jaw pain in established GCA/PMR patient
Discussion
Ongoing jaw pain in established GCA/PMR patient
Polymyalgia Rheumatica (PMR) | Last Active: 5 hours ago | Replies (15)Comment receiving replies
Recently 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.
Replies to "Recently 6/26 diagnosed with GCA- frequent headaches, jaw pain, night sweats, left femoral artery swollen &..."
Connect
@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.