Worried about PMR & GCA: Hi, I am a 47 year old man... - PMRGCAuk

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Worried about PMR & GCA

Corkynuggets
Corkynuggets

Hi, I am a 47 year old man who is pretty scared about the prospect of having both PMR & GCA. I'm new to this forum so haven't posted here before.

I just wanted to post as I'm currently finding it quite hard to concentrate on anything other than the worry I have both of these conditions. I have a full blood test booked for this afternoon (Liver function, CRP, ESR etc) and a further appointment with my GP following that.

This all came on quite suddenly 3 weeks ago after being woken from a fitful sleep with what felt like being thumped on the right side of the head. The pain from this subsided somewhat to a very low dull ache at the top of my jaw. I've been to the Dentist who feels its a TMJ disorder and has referred me to a Maxillo Facial specialist, but suggested I also get a differential diagnosis of GCA.

Over the course of the last 2 weeks, my jaw has ached and has hurt both when chewing and not chewing, so unsure as to jaw Claudication and then 2 nights ago the base of my skull started to hurt when on a pillow to the point where I've slept sat up.

My temporal arteries on both sides of my head are not tender and I can feel a strong pulse in both (but have become more aware of the one on the right side of my head) and I don't have a headache over and above the one when my head is on the pillow. About a week ago, I then started to get a pain in my left hip and left shoulder that I haven't noticed before, so I'm now starting to get concerned about PMR. I haven't had flu symptoms or loss of appetite etc., but have picked up a heavy cold last week, which is making me feel under the weather.

Apologies for the ramble but for the first time in my life I am genuinely scared about my health. I release that these conditions manifest in different ways, but would appreciate some guidance as to how best to proceed with this.

If the blood tests are normal, what should I do next?

Do this sound like PMR/GCA?

Many thanks

10 Replies
oldestnewest

That was a very clear account of what you are going through. Your blood tests could well be normal and you could still have GCA and or PMR, I tend to think of them as manifestations of the same thing. The only way we get diagnosed is by our symptoms and our response to Prednisalone. Other diagnostic tools are just a bonus really.

The urgent one to get diagnosed and treatment for is obviously GCA because of the catastrophic effect it can have on your vision. In your place, with your symptom picture, I would be keen to be given a high dose of Prednisalone at the earliest opportunity. This will also mop up PMR grumbles. Try not to get too anxious, this is a treatable finite disease and you seem pretty clued up and able to communicate with your doctors effectively. Do let us know what happens. There is a lot of knowledge on here from fellow sufferers.

Thanks SheffieldJane,

I'll keep you posted on test results and what comes next. It's good to know there is somewhere to turn to and to be able to talk to people with direct experience of this.

I love your name 😁

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Could be...but you are a bit on the young side (not that they excludes you entirely, but does make the docs waver).

Would be inclined to agree with dentist, but well done him for alerting you to GCA. As you say in GCA you usually get pains in jaw when chewing but not at rest (which may indicate TMJ), but as we're always saying, everyone is slightly different.

Neither of my temporal arteries were enlarged or painful. Base of skull pain may be from pressure of you sleeping upright in unusual position.

PMR/GCA pains are usually bi-lateral.

From my personal experience of GCA I would say unlikely, but hopefully when tests are done you may be nearer to definitive diagnosis.

Your blood markers may be slightly raised from the pain you have and the heavy cold, and as S/Jane says they are not the gold standard test that some doctors think they are.

Do hope you don't have PMR or GCA, and please keep us informed either way.

Good luck.

Many thanks Dorset lady,

Yes, resolutely hoping that it's not PMR/GCA.

I'll keep you posted as to test results.

Just updating as to Blood test results - all negative, but no change in symptoms (sore TMJ on RHS, thick headed feeling etc.)

GP very supportive and has written referral letter for me to attend clinic with Prof. Justin Mason at Hammersmith ( I live in Buxton, Derbyshire) but work at Imperial College, London, of which Hammersmith is part.

I've also arranged an opticians appointment for tomorrow morning to check on eye health.

Has anyone experience of dealing with Prof. Mason and his team, and if so, what were your thoughts.

Many thanks

PMRpro
PMRproAmbassador in reply to Corkynuggets

Not personally - but I have been told he is absolutely superb. I know someone whose GCA was messed about with by a supposedly top GCA expert. Subsequntly she had a heart attack, almost certainly due to the mismanaged GCA and was referred to Prof Mason. He has been excellent.

Corkynuggets
Corkynuggets in reply to PMRpro

Many thanks for your response PMRpro.

Sounds like I'll be in good hands to disclude/confirm suspicion of GCA and put my mind at rest

Quick update.

Had Colour Duplex Temporal Artery Ultrasound scan at Hammersmith Hospital on Tuesday of this week (under referral from Prof. Justin Mason) which was normal. No indication of inflammation, stenosis etc. Interesting as Sonographer invited a couple of other Sonographers to watch as it was 'such a rare' thing to do!

Next step, appointment with Prof. Mason to review clinical symptoms and make diagnosis from there based upon blood test and scan results.

PMRpro
PMRproAmbassador in reply to Corkynuggets

Wish it wasn't "such a rare thing to do" and the others were trained up!!!!!

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