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[MarkBenfield]

Good evening gentle people. I've been diagnosed with PMR for 6 months and have just been diagnosed with GCA. My GP is doing a sterling job but basically this is all new to him (and me). So do I increase my Prednisolone? I'm currently 8mg and he (well, we both) would rather not increase it as I've got this far, but what is the general trend? What is the next step? Thank you!

[HeronNS]

What symptoms have led to the diagnosis of GCA? If you are having vision problems you definitely need a much higher dose asap.

[MarkBenfield in reply to HeronNS]

Luckily not vision problems, or pain eating. But the headaches and the fever (sudden onset) along with elevated ESR test confirmed it for him. Would you expect a high dose of Pred?

[HeronNS in reply to MarkBenfield]

The high dose (like 60 mg or even more) is given to preserve sight. I don't know whether such draconian measures would be taken if vision is not at risk. The GCA usually discussed is the one which involves sight, because losing sight is so dire, but I think a lot of people probably have GCA that does not involve the temporal artery or put the optic nerve at risk. Others with a lot more expertise will be along soon.

[MarkBenfield in reply to HeronNS]

Thank you! Very useful

[HeronNS in reply to MarkBenfield]

ncbi.nlm.nih.gov/pmc/articl...

Sorry, I had deleted this post as I was suddenly unsure whether it was ok. Here it is again.

[DorsetLady PMRGCAuk volunteer]

Hi Mark,

If your GP is convinced it's GCA, then yes, you do need to be on a much higher dose than 8mg. Obviously he does not realise the consequences of not increasing your dose.

As Heron says, 60mg is usually given to preserve sight, but I would have thought you need to be on at least 40mg, if not 50mg, even though to date you haven't had any visual problems. GCA can causes other serious problems besides the risk to your sight if it affects the Aorta and/or other major arteries, which is why it cannot be treated lightly.

As a long standing GCA patient, I would be very concerned about the headaches, which could well indicate that the temporal artery is affected.

You need to get back to your GP ASAP with the paperwork Heron has directed you to, he should be referring you to a Rheumatologist as well.

If you cannot get a quick appointment with him, then suggest you visit local A&E dept for a second opinion - you need to increase your dose if it is definitely confirmed as GCA.

Good luck.

[MarkBenfield in reply to DorsetLady]

Thank you! That sounds like a good plan. Thanks everyone for your input. I will take it seriously. Sounds like my GP is still unsure. I'll keep up the pressure.

[markbenjamin57]

Hi, and greetings Mark

The best I can suggest is that you make best use of the immense amount of reliable wisdom and expertise on this forum to work with your obviously well-intentioned but perhaps relatively less-informed GP (as are many!) in giving him some practical info to work with, in both of your interests.

PMRpro, DorsetLady and HeronNS are great, thoughtful and very well informed contributors here - take their comments seriously. They also have a lovely SOH when you want to share the Lighter Side

Hope this helps, and best wishes on the journey.

MB

[HeronNS in reply to markbenjamin57]

Thanks Markbenjamin, but don't put me in the same category as DorsetLady, Celtic and PMRPro - they really are the pros! 😁

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Not called the three wise monkeys for nothing🙈🙉🙊 Got the t shirts if not the scars to prove it!

[PMRpro Ambassador in reply to DorsetLady]

No scars - just bruises...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Boom boom!😉

[PMRpro Ambassador]

If you have been diagnosed with possible GCA you MUST be referred as an emergency to a rheumatologist - a GP is rarely either qualified or capable in the long term of managing GCA. For one thing, an increase in ESR, headache and feeling rubbish are not really enough to make that sort of decision and if he is pretty sure - you wouldn't be asking this question. If the probability is that you have GCA you MUST be on a MUCH higher dose of pred to protect your vision - and your GP should be aware of that fact. If he isn't - he's not capable, however nice he may be.

The potential in GCA is for the blood supply to the optic nerve to be affected. It can either be a reduction in flow over a long period or it can be a sudden total blockage if the artery concerned becomes too inflamed, the lumen (the middle of the artery) reduced by swelling and suddenly it blocks: it is the same sort of concept as in angina and in a heart attack or stroke. GCA has the potential to cause a "stroke" affecting the optic nerve - and the possibility of irreversible blindness if the optic nerve is so badly damaged it dies. Even longterm reduced flow can cause damage. The inflammation rarely resolves on its own so the risk is the damage will continue accruing.

You've been given one link, here is another from a group in the UK with one of the top PMR/GCA experts as co-author, aimed at GPs to aid them in diagnosing and managing PMR:

rcpe.ac.uk/sites/default/fi...

My own expectation under the circumstances would be that you should have an emergency appointment with your GP, who will call the rheumatology department and request an emergency consultation, telling them he is sending you to A&E. He would write a letter outlining the clinical history, press it in your sweaty little paw and send you off. That is the procedure my optician adopted in Scotland - he didn't even wait to refer via a GP appointment, it involves delay. It is no use the GP requesting and "urgent" appointment - that just means you should be seen in weeks not months - even several days is a risk.

None of us wants to raise our dose of pred, it has unpleasant side effects - but they are rarely worse than the ultimate side effect of GCA. If you have ANY visual signs at all, please don't wait any longer, not even to see your GP, but go to A&E and be insistent about seeing a consultant - not a first or second year qualified doctor who has probably never seen a case before.

I'm sorry to sound dramatic - but it can be a dramatic disease. You wouldn't ask these questions with a heart attack - and neither would the GP, he'd dial 999 and send you to hospital.

[MarkBenfield in reply to PMRpro]

Thank you! Read and understood. I will take your advice. Thank you and thanks to everyone who has responded. I really appreciate it.