Does GCA ever present with mild symptoms ?

Posted by macferse @macferse, Sep 16, 2023

Does GCA ever present in a mild form, too difficult to confirm without biopsy. I am currently 18 months into a second bout of PMR after a ten year break, tapering down , currently on 2.5mg of Prednisolone. I have regular symptoms that I wonder if may be related to CGA, but quite mild. I regularly have a mild pain intermittent pain in my left temple with occasional strong and brief flashes of pain. My scalp sometimes feels slightly painful to touch and my left lower jaw aches slightly whether moving it or not. I am reluctant to pursue this, although I know the danger. During my first attack of PMR I reported seeing flashing lights occasionally and was put on 70mg of steroid as a precaution. This took ages to taper down from and I suffered from every known side effect all the while. So I'm wondering if it is safe to ignore these mild symptoms ?

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I certainly would not ignore your symptoms. It may save your sight or life!

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My PCP and rheumatologist both told me to let them know if I had any tenderness or pain in my scalp or temples. They said that can be a sign of GCA. I would definitely contact your doctor and discuss the symptoms.

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@johnbishop

My PCP and rheumatologist both told me to let them know if I had any tenderness or pain in my scalp or temples. They said that can be a sign of GCA. I would definitely contact your doctor and discuss the symptoms.

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Thanks John. I have been hesitating because the last time it was suspected they put me on 70mg of Prednisolone daily which took a very long time to taper down.

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@rtuna

I certainly would not ignore your symptoms. It may save your sight or life!

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Thanks, rtuna !

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I had scalp tenderness, mild jaw pain, but no vision issues. I was already on prednisone for PMR but my rheumatologist immediately bumped me up to 60 mg. I wasn't able to get a biopsy until 10 days after starting the high dosage so of course it was negative. Since I was doing so well, the doctor tapered me quicker than she normally would have. It's totally worth it to save your sight!

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Thanks teddyz,
That's very helpful !

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@rtuna

I certainly would not ignore your symptoms. It may save your sight or life!

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I was originally diagnosed with PMR in Dec 2019. After taking my first 15mg of Prednisone all of my pain went away. However, I think it was due to being told to taper too quickly GCA turned up three months later. Fortunately, no visual issues. I had really painful jaw when I opened my mouth wide, a tender head, headaches and tender temples. I was told to increase the steroids to 40mg which I am still trying to taper. I manage to reduce down to 5mg then up I go again as PMR starts up again. Recently I managed to reduce it to 4mg and GCA turned up yet again. Good no visual issues so I increased up to 10mg for a few days and tapered 1mg every 5 days....currently on 5mg. I've been offered Leflunomide to help me taper off Pred but hesitant to take it with all the written potential side effects. We're all aware that GCA can cause sight loss quite quickly if not on a very high dose of Pred. But why go up high if no visual problems?

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Hi @jennywren, GCA can cause stroke or blindness if untreated and a higher dosage of prednisone than that for PMR is needed to manage it.
I had PMR untreated a year, then symptoms of GCA including some visual disturbance. Strange symptoms came and went. GCA was confirmed by a temporal artery biopsy and I was put on 40 mg of prednisone, tapering down by 5 mg every two weeks. I also had monthly CRP tests to monitor inflammation. As the dosage of prednisone reduced, I tapered down a couple of mg every two weeks. This went on for about 18 months. I've been off prednisone for nearly a year.
I was prescribed a low dose aspirin every day as GCA can cause aortic complications even for those in remission. I was also told that if my visual symptoms returned to immediately go to the ER for treatment or I could go blind.
The thing is, if not treated properly, the immune system will continue to attack different arteries etc. in the head. I don't think there's any such thing as mild GCA. A physician friend told me it's the closest thing to an emergency in rheumatology.

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Thanks to everyone who has contributed to answering my original question. I a now much more aware of the dangers of ignoring my mild symptoms which I will ask my rheumatologist to investigate.

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Yes, GCA can present with minor symptoms. When I was first diagnosed in 2019 with PMR three months later GCA showed up too. My symptoms then were: Painful jaw when I opened my mouth wide. My top back teeth ached. Headaches. Tender Head and Tender Temples. It's reoccurred since then three times but with fewer symptoms, so I called them mini flares. Headaches, and Tender Head. I upped my Pred from 4mg to 10mg where I stayed for a week then tapered by 1mg after that. Currently, I'm back to 4.5mg and so far experiencing no pain. I'm fortunate that I didn't experience any visual issues each time. If I had I'd have taken a much higher dose or gone to the hospital. My Rheumatologist started me on 15mg Of Pred for PMR but upped it to 40mg for the GCA. It's just a shame that Rheumy's and Docs seem to taper us all far too quickly leading to lots of flares. The key to this disease I've found is the slower the better and by small increments. My personal choice is to remain on each taper for 4 to 6 weeks and dropping by 0.5mg.

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