1. < Polymyalgia Rheumatica (PMR)

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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jennywren | @jennywren | Oct 3, 2023
In reply to @tsc "Hi @jennywren, GCA can cause stroke or blindness if untreated and a higher dosage of prednisone..." + (show)
@tsc

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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Agree 100% if one has visual problems. Fortunately, I haven't with the three mini GCA flares I've had. I can't see the point of returning to 40mg when I managed to eliminate my symptoms by going back to 10mg. I still have a tender head though but I had that on a high dose too.

Currently taking 4.5mg for the whole of October then I will attempt 4mg again on the 1 Nov in the hope this time I will be okay. I remain on each dose for a month. I'm in the UK and pretty much left to my own devices.

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lfd28 | @lfd28 | Oct 3, 2023
In reply to @jennywren "Agree 100% if one has visual problems. Fortunately, I haven't with the three mini GCA flares..." + (show)
@jennywren

Agree 100% if one has visual problems. Fortunately, I haven't with the three mini GCA flares I've had. I can't see the point of returning to 40mg when I managed to eliminate my symptoms by going back to 10mg. I still have a tender head though but I had that on a high dose too.

Currently taking 4.5mg for the whole of October then I will attempt 4mg again on the 1 Nov in the hope this time I will be okay. I remain on each dose for a month. I'm in the UK and pretty much left to my own devices.

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If you are in the UK, there is another blog (based there) where you can find excellent information: PMRGCAuk on the healthunlocked.com website. That blog and this one have been very useful for me. I’m in the USA.

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jennywren | @jennywren | Oct 4, 2023
In reply to @lfd28 "If you are in the UK, there is another blog (based there) where you can find..." + (show)
@lfd28

If you are in the UK, there is another blog (based there) where you can find excellent information: PMRGCAuk on the healthunlocked.com website. That blog and this one have been very useful for me. I’m in the USA.

Jump to this post

Thank you, yes, I know about HealthUlock. I'm with the FaceBook group at the moment and I'm finding it great.

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