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GCA conserns
Hello, first of all sorry for my bad english. My native language is the hungarian. It is my first post here but earlier i have learnt a lot here, and found a lot of useful information and help about PMR.
I am 49 years old and was dignosed with PMR in August of 2023 and was prescribed steroid 16 mg daily. Now am I on 11 mg and tapering down by 1 mg per month. What i am worry about is that i developed a few symptoms that point to GCA. I have headache both in my temple and forehead area and small jaw pain when I eat and mild face pain similar to sinusitis. The headache is mild, and does not last all day long. I have small focusing problem in my left eye, not blurry vision, but quite strange feeling. I have dry cough for more than a month now. When these symptoms started about a few weeks ago I visited my rheumatologist and she told me that these symptoms are not related with pmr, i would have to visit a neurologist because it is probably an aura migraine. I don't think so, because i never ever had any symptoms related with migraine earlier in my life. I am a very scared because I'm aware of GCA and I am very stressed at the thought I would have it. Can the GCA develop during the steroid treatment of PMR? Or usually the GCA comes when the PMR is in remission and the dosage of steroid lowered? I little bit confused. Thanks for your help.
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I am not a medical professional. I am a well read patient. I have had lupus for years, and hospitalized with GCA last August. I had a temporal biopsy and was started on 60 mg of prednisone. With in days they also diagnosed me with PMR. The two frequently go together. I am finally down to 5 mg, but my PMR seems to be coming back. Fortunately, I receive an Actemra infusion monthly. It has allowed my steroid reduction. Unfortunately, my body responded to the steroids in overdrive. I developed severe Cushings Sydrome and was affected physically, as I had difficulty walking for months and emotionally. I am not sure if I can go through that again. Today, I drive, walk, and work in my garden.
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2 Reactions@jojobarrk curious about the book you mentioned. Can you share the title?
Those symptoms are very suggestive of Giant Cell Arteritis (GCA). Has anyone consider this diagnosis. Get another opinion. See an opthomologist re grading your vision issues. I have received a diagnosis of GCA with those symptoms and more. Vision loss (permanent) in the upper right eye. Wish you well.
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1 Reactionaewin, I see this was posted 2.5 yrs ago. I would be interested to know how it all came out. I was diagnosed with PMR Oct. 2025 after 4 months of unexplaiable debilitating pain and soreness. I was warned, early on, to look out for GCA symptoms as this can result in strokes and blindness. I developed unusual GCA symptoms Jan 2026. Nightly jaw pain 8/10, soreness at temples and posterior base of my skull. Jaw claudication with chewing firm foods, but no headaches. My PCP didn't pay much attention because it wasn't the classic symptoms. My research revealed that I was, in fact, having GCA symtoms. After 5-6 weeks I convinced my PCP. The temporal artery boipsy confirmed the diagnosis. My wonderful rheumy with decades of experience is Hungarian. She is fabulous. She consulted with my PCP and insisted on the surgery.
I pray you found a knowledgeable rheumy and received a definitive diagnosis without any permanent damages.
This forum of fellow PMR/GCA sufferers has helped educate and uplift me. God speed to you on your journey.
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2 Reactions@kayept What surgery are you talking about? Do you mean the biopsy for GCA? If you have PMR what drug treatment were you on since steroids can mask the GCA. Another question would be what treatment did you Rheumy put you on for your GCA?
GCA is naughty and a result of my Dx I have had to add a couple of specialists to my cadre of doctors. I was completely asymptomatic so it eluded me and my doctors for an extended period. My understanding is that since I was asymptomatic that if they had done a temporal biopsy, it would have been negative with or without steroids. My hope for you is that all goes well for you now and into your future.
Thank you jabrown0407.
Yes, the surgery was temporal artery biopsy. My experienced vascular surgeon told me in recovery he could see it is positive just by looking at it with his eyes.
My PMR diagnosis was in oct. 2025. I was on 10 mg pred with no issues when the GCA symptoms began Jan 14th this year. I was put on 40 mg pred wFrb. 16th thru April 2nd when my rheumy decreased to 30 mg fir one week, then down to 20 mg. My rheumy had me begin Actemra infusions March 17th, then I began Tyenne srlf injections April 17th. I am now down to 5 mg pred and will decrease 1mg per month until off the pred provided I have no flares.
So far, so good.
My GCA symptoms were not typical, but my research and my "gut" told me it was def GCA.
As for a biopsy being negative, you'll never know. I'm sure you are aware the GCA causes inflammation of the intima of the arteries and can effect ANY artery in the body, but typically the facial arteries get the brunt of the disease. The biopsy must be done within 14 days of starting high dose pred, or, as you say, the pred will mask the inflammation.
Thank you for your questions. I hope this info helps. I pray all goes well for you, too!
These crazy rheumatic diseases are challenging 😳 God speed to you!
@kayept Dear kayept. Thank God it was not confirmed that I had GCA, the symptoms disappeared within a few weeks, maybe it was really a migraine. No symptoms have appeared since then. Now I am taking low dosage steroids for the PMR and receiving biological therapy. I hope you are well and stay strong! Hungarian doctors are famous and respected all over the world.
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