Possible GCA

Hi , as Jeff says I have non temporal , but extensive GCA & PMR diagnosed with PET scan .
Started 50 mg oral pred and 162mg subcutaneous Actemera immediately. Taper off pred three months.
I’m 4months post diagnosis on Actemera as mono therapy
Im in remission according to pathology and symptoms (symptom free )
I feel fortunate to have such treatment success so far .

This condition is so scary. I have mild to moderate tmj-how do I tell the difference between jaw tightness and pain due to GCA or us it from tmj? I carry a lot of stress in my jaw, not helping that I'm terrified of going blind. I see the rheumatologist on Monday, hopefully he can answer some of these questions. My primary doctor said he's had extensive experience with pmr and gca. Hoping for some answers and some ways to cope with this!

Do you have to have all the symptons to have GCA?
I have a few of them, headaches, jaw tightness and sometime hurts to chew, sometimes fuzzy vision but not double vision or blackness. I did have a biopsy that was negative but just on one side and was also on 40mg of prednisone for about 2 weeks before the biospy. Could you get a false negitave form being on prednisone?

Dear mehow: I started out with head pain while lying down to sleep. One a.m. I sat up in bed and my left eye went blind with a white steak which disappeared after a few seconds. Sat with coffee watching tv at 8:00 a.m. and had sharp eye pain. Waited until Optomotrist office opened and they got me in at 11:30. He send me to the ED and they did labs and put me on Prednisone on a Tuesday. The surgeon's office closed early Wednesday a.m. due a snow storm (this is January '24) had biopsy on Thursday a.m. and on Friday they are looking for an antibiotic which only the hospital pharmacy had as we were leaving the country at 2 a.m. Saturday a.m. Rheumatology kept in touch with me the 6 weeks we were gone. Had to go to the local hosital for lab tests. One week I was on 100 mg of Prednisone, nightmare. Tapered off Pred at end of August on put on Actemra IV once a month. I hear: you are pre-diabetic, you have CKD. So much muscle loss (155lb down to 125lb. I did not go blind and now you are on anti-inflammatories you should be safe from blindness. I bruise and get skin tears from the drugs. Last summer had hair shedding. My hair dresser said it felt like chemo hair. My hair has come in kinky-curly which is opposite my wavy hair. Have a bone density Monday and know I have bone loss from Pred and had L4-5 fracture. I also have TMJ and read we could have jaw fractures plus my spine hurts. Hang in there as I know how and what you are going through. I also have fibro and lichen planus

I have tmj with arthritis, my head/scalp hurt and one morning I sat in bed and had lt eye blindness for a few seconds, got some coffee and while watching the news started with severe eye pain at 8 a.m. Called optomotrist who saw me at 11:30 and sent me to ED. After testing they prescribed Prednison and an antibiotic which no pharmacy in the area had so suggested checking with the hospital pharmacy, bingo on a Friday evening. At 2 a.m Saturday we left the country for 6 weeks. Treated over the internet and had labs done at island hospital. In August tapered off pred and put in monthly lab and IV Actemra. DEXA scan on Monday but know I have lost bone mass with L4 fracture and bulging disc. So far have not fallen on ice or snow. I can say "don't stress out" but having gone throught this I did stress out and not sure if that is what made my hair shed last summer. Hang in there and know with this site you have people who care and will support you.

Sounds like GCA and am glad they have started treatment. Classic symptoms. Have had GCA, not counting the HA and jaw and chewing problems, for 13 months already. On Prendnison January to August, then started on Actemra IV once a month. I expect to be on Actemra for another year or more. See rheumatologist in March to see ask her how will she know when I am in remission and how much longer I might have to be on Actemra. GCA can cause brain aneurysm, abdominal aneurysm, stroke, or heart attack. Actemra can cause cancer.

Congratulations, and hope you remain in remission.

When I had untreated GCA my jaw muscles got extremely fatigued when I was chewing food. Meals were kind of an ordeal because of that. I had other symptoms too - night sweats, a low grade fever for a few months, tenderness on my scalp above and behind my ears, and pain in my cheekbones. I didn't have any headaches, but a lot of people with GCA do have them. I also had undiagnosed PMR before the GCA, so lots of stiffness all over, especially in my shoulders and neck. But about half of people with GCA don't have PMR.

And as @hi5rockymountain says, since you are already taking prednisone, your vision should be ok. But just in case you do have any vision problems, go to the emergency room. That's what I did and they saved my vision.

40 MG, omg! All docs say, no more than 1 week, then taper. Ck this, I had multiple infections, no cause, derm doc said time for Delvance. Infusion, 90 mins, 2 days latr, what relief. Not sure how it was indicated, but it had provided help with multiple issues. Regards, Jerky.