Connect
← Return to Giant Cell Arteritis Diagnosis
Discussion
Giant Cell Arteritis Diagnosis
Polymyalgia Rheumatica (PMR) | Last Active: Mar 31 7:58pm | Replies (104)Comment receiving replies
I appreciate everyone sharing their stories. I am thankful to find this group.
I thought I was recovering from a severe case of PMR for 18 months, dropping down to 2 mg. of prednisone and a weekly dose of MTX 2.5 mg, when I suddenly experienced GCA ten days ago! I can't put my head down, I have pain on the right side of my face both in front of and behind my ear. I haven't been able to sleep laying down as the throbbing and discomfort make it impossible. I sleep (when I can relax) sitting up on our couch.
My rheumatology practice is down to two rheumatologists (mine moved to another state in June) but they won't have a replacement until October. So my appointment is September 23!! I was put on the "waitlist"- my PA advised I call every day explaining my pain and asking where I stand on the "waitlist." He also said when the pain is too bad, take a Tramadol. I don't want to get addicted. He assured me that I won't since I take them so sparingly.
I turn 84 nxt month and am depressed to think I have to start back on prednisone and that this disease can cause blindness ad stroke. My DNA is northern Europe. No one had this disease. My mom lived to 97 and my dad age 90. Thank you for listening. It seems all of us receive some different treatments. I live in a small GA town an hour away from Augusta, GA and the medical centers and doctors.
Replies to "I appreciate everyone sharing their stories. I am thankful to find this group. I thought I..."
You do need to get it evaluated ... don't wait. I have never been diagnosed with GCA but I have been treated for PMR for many years. My doctors always ask me about any symptoms of GCA every time I see them. They have always emphasized that I need to report those symptoms if they ever happen.
I get plenty of facial pain and visual disturbances but I have never been diagnosed with GCA. I have been diagnosed with "other things" but that doesn't matter because any symptoms like you have while you are diagnosed with PMR require an early evaluation. Go to the emergency room if you have to in order to get it evaluated.
I was diagnosed with GCA in November 2024. As soon as myMD/PCP realized what my symptoms (which did include all that you mention plus some loss of vision in my right eye) indicated, she sent me for lab reports to check on inflammation, gave me a shot of prednisone (don't know the amount) and prescribed prednisone at 60 mg per day to protect my eyes. She also contacted a vascular surgeon for the needed biopsies. Only then did we discuss finding a rheumatologist. The prednisone immediately took care of my symptoms. I saw a rheumatologist a few weeks later and he picked it up from there. So, I think getting back to your PCP immediately would help. It is all about protecting your eyesight. I am 82 years old and successfully tapered off the prednisone and have been on Actemra ever since without problem. Best wishes. It's a difficult journey but not too bad. No one in my Northern European family had this either. Just lucky, I guess.
I have GCA - diagnosed earlier this year.
If you are suspected of having GCA and not being treated for GCA/can’t get an appointment, in my opinion you should go to the ER because of seriousness of untreated GCA including sudden and irreversible blindness.
I had an early ER visit after suspected GCA and initial treatment. In addition to addressing vision issues it helped to get my treatment on track/going before I had a rheumatologist.
I’m 83. Still in good shape. Work out 5/week, play singles tennis 3/week, mostly feel normal good. I say this just to let you know my normal situation. I have PMR/GCA. Have been on prednisone about 2 years. Recently went from 3mg down to 2mg. My PMR symptoms were still under control at 2mg but my GCA reared its ugly head big time. Went back to 3 mg and was better, bumped up to 5mg and now feel normal. Will try to get down to 3mg. But 3or5 is fine with me as long as everything stays under control. If you have GCA symptoms bump up on prednisone till they go away. Long term prednisone use side effects are nothing compared to the hell that untreated GCA will give you. Just my opinion…
Connect
Have they upped your prednisone dose? It sounds like you should be somewhere between 40 and 60 mg per day. I have PMR and GCA, and I felt better immediately once I started on 60 mg per day. I had vision problems before I started treatment, but my vision turned out ok. I've been taking prednisone for 13 months, and Actemra for a year. I'm at 1 mg per day of prednisone now, and I hope to be done with it in 2 and a half weeks.
I've read that it is very rare for someone with GCA to lose vision once they've started treatment. I take a baby aspirin every day to lessen the chance of a stroke.