Unable To Take My Advice

[ValFF53]

Hello and thank you to everyone who has given advice about my friend who has recently been provisionally diagnosed with GCA. My recent post was called something like ‘My Friend Has GCA’.

She has now been on 60mgs of Prednisolone for a week and is saying that the pain in her eyes and eyesight are no better but her scalp pain is much improved.

I have emphasised the need to be seen by a Rheumatologist ASAP and researched and found one with a Specialist Interest in PMR and GCA 1.5 hours away from her. She said she feels ill to travel that far at the moment and seems happy with the advice and treatment she is receiving. I, however, am very concerned about her.

Any further advice would be gratefully received.

Valerie

[DorsetLady PMRGCAuk volunteer]

Hi Val,

It may take a little longer for her eye pain/ sight to improve, it takes a while for things to settle, but as you rightly say she should see a Rheumy. Unfortunately if she doesn’t feel up to it, there’s not a lot you can do....apart from trying to coax her.

[SheffieldJane]

She may have a great GP Val. Give her some space, there is an element of shock that comes with this diagnosis. She is on the only treatment that there is and therefore safeguarded I would imagine.

You are a great pal that loads of us on here would welcome!

[Hidden]

If she goes to A&E won't they call in a resident Rheumy?

[PMRpro Ambassador in reply to Hidden]

Only if they agree - and if she can't face an hour and a half in comfy car, she won't manage on an A&E plastic seat...

[Hidden in reply to PMRpro]

True

[PMRpro Ambassador]

I think you have done your best - must just be patient and keep your fingers crossed. She is a responsible adult and if she can't face travelling there isn't much you can do.

On 60mg things should improve, albeit slowly.

[granny-b]

It took 2 weeks on 60mg before I started to feel I was on the mend. I had head, jaw and blood symptoms but no eye problems. I had a positive biopsy after a week.

So maybe progress is ok. X

[ValFF53]

Thank you everyone.

She has sat for hours in A and E twice already and although has seen different doctors none have been a Rheumatologist. She has been told she won’t be referred to one until they get a positive temporal artery biopsy and they won’t do that until her condition is well controlled. That is why I am very concerned xx

[PMRpro Ambassador in reply to ValFF53]

So am I because they are putting the cart before the horse - but there is little we can do.

[DorsetLady PMRGCAuk volunteer in reply to ValFF53]

Sorry, but that’s not the way to do it. She’ll probably get a negative result from the biopsy once she’s been on Pred, so waste of time!

No wonder you’re concerned.