Gca

[Fifelassieo]

I have just started getting pain in my right jaw, l am not having any headaches, have problems with blurred eyes sometimes, l was diagnosed with Polymyalgia in December, looking for advice

[PMRpro Ambassador]

What sort of pain? Only when chewing, especially harder food? Does it go away and of so when?

[Fifelassieo in reply to PMRpro]

Hi, this is the first time it has happened, it was when l was trying to eat my breakfast today, l can still feel it when l try to open my mouth, it seems to happen only when l open my jaw. I would describe the pain as acute..

[PMRpro Ambassador in reply to Fifelassieo]

Sounds more like a joint problem than GCA. GCA jaw pain is a dull ache that comes on while you are using it, chewing usually but even talking can be enough. It gets worse until you stop to rest - when it stops, only to start up again when you resume the action.

[SnazzyD in reply to Fifelassieo]

Where exactly is the pain? Any noises when you open or chew?

[SheffieldJane]

Did you get your ECG results? Jaw pain can also be associated with heart trouble. Or, in my experience, an oesophageal spasm can extend to the jaw.

Blurry eyes can be associated with Prednisalone use. I would advise you to have a thorough eye check up, either in a very well equipped optician or ask for an eye hospital referral.

If you really feel that this is beginning to add up to GCA, I would go to A&E. At least tell your GP about your worries. I think they can be magnified by the way Pred makes you feel initially ie nervous.

[Fifelassieo in reply to SheffieldJane]

Hi, l was referred to chest pain clinic, l have now to wait for a ct scan which could take up to 2 months, cardiologist wants me to start on beta blockers until they get the results. Didn’t post this as l don’t have an answer yet, l did have jaw pain when l had the chest pain. This new jaw pain just started this morning. It is especially worse when trying to chew.

[HeronNS in reply to Fifelassieo]

I agree with Sheffieldjane, at least tell your doctor about this, and if it gets worse or you notice any worsening of your eyesight head to your emergency department. Better safe than sorry.

[SheffieldJane in reply to Fifelassieo]

I will be thinking of you! There’s nothing worse than not knowing in my view. X

[fmkkm]

Hi there,

When I was in the throes of undiagnosed GCA I got up one morning and my jaw hurt but really I could not open my mouth. Almost like an attack of TMJ. Do you have any dull aches at the base of your skull? Does your scalp feel a little sore when you comb your hair? There are usually a few other slight symptoms that can be going on .

[Fifelassieo in reply to fmkkm]

Thanks, l will see if any other symptoms happen. My scalp does feel a bit tender.

[Fifelassieo]

Thanks for all replies, l have the doctor today, l will let you all know what he says

[Telian]

There can be so many other reasons for your symptoms but you don’t lose your sight with those. See your GP and tell him/her your fears. I always had jaw pain with numbness but never when chewing. I had visual disturbance which was treated as migraine - until I lost sight in

one eye and had a GP who was on the ball with GCA. Was fast tracked and on 50mg Pred within 24 hours for GCA - my sight returned. Developed PMR some months later. Don’t sit around Just get checked out.

[Gaycreasey]

I’ve had pmr since November 2016 and had reduced from 15 to 4.5mls using liquid solution prednisoline. Over a week I developed pains in my head which eventually settled over the right side, ear and temple. I saw a doctor, a locum at my surgery who was very thorough and even phoned the hospital for advice. He put me on 40mls of Pred and some gut saving drug and sent me off to get some blood taken. He did say that because he was a locum the blood results would not come back to him but that he was going to write it up very clearly so whoever did pick it up would know what was happening. I phoned yesterday for the results of the morning blood tests and was told that they were clear and no further action was to be taken. I argued and said that I needed to see a doctor because my drug dose had been changed etc. It was agreed that a doctor would ring later. Unfortunately my phone was turned down so I did not pick up the call. This always happens on a Friday doesn’t it, when the surgery is closed for two days. I can stay on the upper dose until Monday, feeling great because of the high dose and the head pain has almost gone. I’m not confident however that whoever I see or speak to on Monday will actually know what I’m talking about.

[PMRpro Ambassador in reply to Gaycreasey]

But the blood test CAN be in "normal range" for up to 1 in 5 GCA patients. Doesn't mean it isn't GCA just because they are "clear". If the pain comes back when the pred is lowered don't be brow-beaten...

[SheffieldJane in reply to Gaycreasey]

Such a familiar story! Fight back with every spoon you have if necessary!

[Gaycreasey]

Thanks PMRpro, it is a battle isn’t it? If I stay on 40mls for a week (hopeful), can I come straight back down to what I was on prior to this little blip? I was feeling very proud that I had managed to get down to 4.5mls but I recognise now that I had been dragging myself along with little energy and a very low mood, so possibly was too low for me. Probably would be best to come down gradually, say in 10ml jumps?

[PMRpro Ambassador in reply to Gaycreasey]

Theoretically you can drop back after up to a week to 10 days at the higher dose. Don't know how much you would notice it though, it's a big drop. I'd certainly aim for 5mg rather than the other bit and see if you feel any better,

[Gaycreasey in reply to PMRpro]

Yes, I’ve always found the slower the better and have used the DSNS method most of the time. Yes, I will go back down to 5mls rather than 4.5 because , although it is only .5 ml it was the level that I was most comfortable with.