GCA urgent rheumatologist app coming up

[Dee101]

Hello ladies I've got my appointment to see what the rheumatologist thinks ,if it's gca .

I've got normal inflammatory markers and after 7 days the prednisolone hasn't modified the pains.

Can you give me some advice as to what I should be asking ?

All tests at opthalmology we're normal and they were saying not gca due to bi lateral pain and no raised inflammatory markers .

After 7 days of 50mg pred ,would you expect my symptoms to be stabilised . I'm struggling with random chest pains (stabs on right hand side )and lack of sleep on the prednisolone.

Gp has said given the side effects and lack of response aftern7 days I could stop the prednisolone or keep it going for a few more days until I see rheumatologist.

Thanks as always for any input

Thanks as always

[SnazzyD]

If you have GCA 50mg is not necessarily enough; some people need double that. My GP sent me straight to A&E where they set about ruling other things out such as giving me a CT scan. I had normal markers too and reported symptoms on one side only. After the event I realised my ‘good’ side was involved, just not as badly. It isn’t always bilateral. 60mg helped me very quickly but as I said, some need much more. GCA can affect other vessels, not just the eye arteries too.

Has the Pred changed any of your symptoms?

When is your appointment??

[Dee101 in reply to SnazzyD]

Thanks Snazzy DOh ok maybe I needed more ,although I was struggling with the side effects.

I didn't feel like the pain was changed although the pain is more stabbing and achey and not in the severe range. Still difficult to manage. I'm actually feeling jaw pain tonight more.

My appointment is tomorrow.

Did your pain subside totally with prednisolone 60mg and how quickly ?

Thanks for the reply and hope you are doing well now x

[SnazzyD in reply to Dee101]

My GCA is ok now. I had a slow run up to it and then it blew up over 48 hours. I was diagnosed quickly even though my bloods and biopsy were negative. 60mg worked in a couple of hours BUT I was on thin ice especially when they reduced to 40mg after a week for 6 weeks. Any over doing it or a short period of poor Pred absorption (long story) brought the symptoms knocking. My quick response to address those 2 things meant no flare.

Dose level is individual so what works for one may not for another.

Yes, the side effects were grim but I realised that it was par for the course. I don’t think it helps with doctors not really telling you how rough one can feel and some implying that one should be back to ok once on Pred. I do find it interesting that people, myself included, take on some types of chemo accepting the side effects/risks without much push back. I think this is because they are more terrified of cancer than the drugs. GCA is an unknown thing that you often have no evidence for, hadn’t heard of and if you have any diagnosis scepticism from the medics it feels like it isn’t acceptable to suffer like this.

Can you describe your pain in more detail? What do you mean by chest? Pain doesn’t have to be severe to be significant. My GCA pain was maddening but I’d had worse tension headaches. It is possible you have some large vessel involvement so your eye tests may well be ok. An early PET scan would have been more useful. It doesn’t matter if it isn’t GCA, a diagnosis is what is needed and the faffing needs to stop.

[Dee101 in reply to SnazzyD]

Hi Snazzy D Thanks so much for the reply. I had my appointment yesterday and they don't think it's gca . They sent me for doppler vascular scans (2 different people did them to cross check) and these were negative ). So after the history,bloods , scans examination and lack of response to pred it's not gca . She thinks it's trigeminal neuralgia ? She said not to go back on the pred and will discuss with gp a referral to neurology . Xx

[PMRpro Ambassador]

SnazzyD has said it all - I just wanted to ask about the jaw pain which you say is worse in the evening. GCA jaw pain is typically a claudication pain, pain that only occurs when the jaw muscles are being used such as in chewing, speaking or singing in particular. It then eases when the action is stopped.

"not gca due to bi lateral pain and no raised inflammatory markers ." - never heard that bilateral pain rules out GCA, it can happen on both sides and also with no raised markers in up to 1 in 5 patients - more commonly it seems in younger patients and other atypical presentations.

You can have GCA that isn't affecting the retina or optic nerve.

If it were me, I'd wait to see the rheumy but they are going to be a bit at sea with you already having been on high dose pred for some time anyway.

[Dee101 in reply to PMRpro]

Thanks PMR for the wonderful response. I had my appointment yesterday and they don't think it's gca . They sent me for doppler vascular scans (2 different people did them to cross check and these were negative ). So after the history,bloods , scans examination and lack of response to pred it's not gca . She thinks it's trigeminal neuralgia ? She said not to go back on the pred and will discuss with gp a referral to neurology . Xx

[PMRpro Ambassador in reply to Dee101]

Yes - that was what I thought it could be. That's possibly good news - TGN is a pain, in every sense of the word!!!!

[Dee101 in reply to PMRpro]

Yes that's how I'd describe it too ! But can't thank this community enough and will hang around just in case my symptoms change . It's been a real eye opener learning about GCA and the dilemmas of diagnosis and treatment.

[PMRpro Ambassador in reply to Dee101]

All the best - hope they can sort it out!

[SnazzyD in reply to Dee101]

I hope your resolves soon! I had TGN last year and it was like be ing taken by surprise by a shock-like pain that shot into my jaw and up my head, not pleasant.

To what are they attributing the chest pains?

[Dee101 in reply to SnazzyD]

Thanks lovely Oh really ,bless you x hope it's all settled now .

mine is more stabbing than electric ,but definitely very painful and is causing some tenderness.

The chest pains were the prednisolone as they've stopped as soon as I stopped taking it and never had them before. They checked my main artery in the chest yesterday and that was fine ,so hopefully that pain stays away !

Thanks for all your brilliant replies.x

[SnazzyD in reply to Dee101]

Well, really sorry about the cocktail fork to the head issue but excellent that you are not on the Pred train and your vessels are ok. Talk about mixed blessings!