GCA flare?: Diagnosed with GCA in July 2023. Put on... - PMRGCAuk

PMRGCAuk

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GCA flare?

Jensssscar profile image
13 Replies

Diagnosed with GCA in July 2023. Put on a 60mg Pred drip within a couple of days.

In October ‘23 my rheumatologist prescribed 20mg MTX as I had lost sight in my left eye in March 2021 (2 days after my second Covid jab) as a steroid sparer. He was concerned about the sight in my right eye.

Since then I have successfully tapered to 4.5mg Pred by Jan 1st 2025.

On Jan 12 went for a walk, weather cold and windy. Ended up with a severe headache behind my left eye and over my left temple. Took paracetamol which sorted out the severe headache but the background temporal pain remained. Annoying but I could live with it.

Jan 14th saw dentist for a check up and I have to have 2 upper left side molars out (apparently they are dead but no pain). Made an appointment for next Wednesday to have them out.

Jan 26th noticed jaw ache on left side and the temporal headache remained.

Jan28th had a telephone appointment with my doctor. Agreed to up the Pred dose to 10 mg and he arranged a blood test for the next day. Tests came back all normal. I have remained on 10mg Pred.

I still have background headache on left side above my eye and the jaw ache has not gone away .

Not sure what to do, up the Pred dose again or just carry on and have the teeth out and hope for the best?

Most grateful for any suggestions

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Jensssscar
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13 Replies
SnazzyD profile image
SnazzyD

Some detail on the jaw ache will be helpful. What kind of jaw ache is it? Where in the jaw exactly? What makes it worse or better? What happens when you chew?

Jensssscar profile image
Jensssscar in reply toSnazzyD

Thanks for coming back so quickly.

Jaw hurts when I yawn or open my mouth wide. I don’t really have a problem chewing.

PMRpro profile image
PMRproAmbassador in reply toJensssscar

Sounds more like a TMJ (tempromandibular joint) problem. This article mentions "dead tooth" as a potential cause even if the tooth itself isn't painful.

dentistryforsandiego.com/bl...

Jensssscar profile image
Jensssscar in reply toPMRpro

Thanks for that, TMJ could well explain it. I hope the dentist will know all about it!

SnazzyD profile image
SnazzyD in reply toJensssscar

I agree with PMRPro and sounds like when I had TMJ issues when I had Pred weakened muscles. Doesn’t sound anything like my GCA jaw pain either.

PMRpro profile image
PMRproAmbassador

Difficult to say really - jaw pain that persists is not typical of GCA but I have no doubt it can persist. GCA claudication usually starts after a minute orso of starting to chew and stops when you stop chewing rather than continuing. Teeth can cause all sorts of problems!

Angelsmummy profile image
Angelsmummy

Hi J,sorry to hear about your sight loss.Me too,,DL and a few others.Regarding the jaw pain,one of the symptoms that I had was a pain when eating,after a short while of chewing the pain was awful so basically gave up eating anything that required chewing.Lost 2 stone before diagnosis of GCA.I get TMJ periodically ,totally different pain altogether.Hopefully it is just dental problems for you.I find that a wheat bag placed on side of jaw helps immensely.Good luck to you.xx💐😜

Jensssscar profile image
Jensssscar in reply toAngelsmummy

Thanks for coming back to me. It’s odd this jaw pain , bad first thing in the morning then by the end of the day nearly gone. Starts up again next morning.

I’m going to stay on 10mg Pred until I have the teeth out then drop back down after and hope for the best!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toJensssscar

Maybe not drop too quickly, you might feel a bit under the weather after extractions - and you can stay on increased dose for up 14 days without impacting your drop back down…and suggest to 5mg not 4.5mg.

Jensssscar profile image
Jensssscar in reply toDorsetLady

👍 thanks for the advice.

Angelsmummy profile image
Angelsmummy in reply toJensssscar

Maybe you grind your teeth in the night??xxx💐😜

Jensssscar profile image
Jensssscar in reply toAngelsmummy

Hope not!! 😬

Darkchocolate1 profile image
Darkchocolate1

I had extreme jaw pain and could not chew anything for several weeks. Dentist thought it was TMJ which it was not. Finally told it was trigeminal neuralgia. Pain pills did nothing for it. No one ever suspected GCA I had not yet been diagnosed with PMR. Fortunately it was not GCA. The Trigeminal pain slowly disappeared after a month or so. There needs to be more education about GCA.

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