Back up to 40mg

John - so glad you went to the optometrist, I was getting quite concerned and I'm sure the others who posted were too. We've had several people with stories similar to yours and we've nagged them to go to the doctor - only one has been a false alarm so far so it is obviously worth us sounding like a load of old women!! :roll: :wink: Well - I suppose some of us are :lol:

Hope you're feeling much better very soon, with luck you'll be able to reduce the dose soon. But the main thing is it will have been caught in time, no fun messing your sight up,

EileenH

Good luck, John. You did the right thing and if it is a false alarm you still did the right thing. :ok:

John wishing you all the best so glad you went to the doctor

mayfly = John

The relief that you took the advice given so freely on this website.

John I just hope it turns out not to be GCA - but if it is - thank goodness you have not lost either partial or total vision.

I have GCA person only and am well aware of the difficulty in getting it diagnosed. Not that I had trouble, I have a brilliant GP.

When it has all settled down, visit www.pmr-gca-northeast.co.uk and download the British Society of Rheumatologists Guidelines on GCA issued June 2009 and take them to your GP.Tell him politely that as you now have GCA and are going to be visiting regularly - you thought both you and him ought to get up to speed.

If he takes the hump - find another GP.

I know that GCA is just 1 in 50,000 people, but that figure is going up not down and because it can result in loss or total loss of vision it should be treat as an emergency, just like a heart attack or stroke.

Awareness has to be raised and as quite a few people who already have PMR are at risk of GCA developing (and nobody knows the reason why) GPs who have PMR patients should make themselves aware of the future pitfalls.

I can excuse a GP who has not come across PMR, but cannot excuse a GP who has a PMR patient who goes on to develop GCA.

Good Luck and I do so hope it is all cleared up for you. Come back and let us know.

Hello again John

I'm so glad you've posted as I've been wondering how you are and worrying about the fact that a couple of us may have alarmed you in our earlier replies but, as Eileen has already said, our \"nagging\" has been proved not to have been in vain on a few previous occasions.

I do hope that GCA may be ruled out by the rheumy for you tomorrow but, if it should be confirmed, then take great comfort from the knowledge that your eyesight has been saved.

I was diagnosed with both PMR and GCA and, like you, once a GP suspected the latter, he immediately prescribed 40mg of Pred (now about to go down from 1mg!) and instant referral to a rheumatologist.

Very best wishes for tomorrow - do let us know how you get on and we will, of course, try to answer any questions that may arise - we've usually been there, done it and got the t-shirt so to speak!

MrsO

Hi MayFly,

I have nothing to add to what the others have said, but just want send you a hug :hug: and let you know that we are all thinking of you.

I know you are probably frustrated by the way things have developed, but it could have been so much worse if left unchecked :cry: .

Well done to you for going to the optometrist and getting your GP and a rheumy involved so quickly :wink: .....you won't regret it, even if it does turn out not to be GCA, and the risk of losing your sight is not something any of us would want to take a chance on

Very best wishes that you start to feel much better soon.

Pauline.

Hi,

Thanks to you all for the good wishes, it really gave me a lift. I made a mistake, I am on 30mg not 40. Confirmed GCA by clinical examination. May have to have a sample taken from my temperal artery but not likely because of the amount of time that I have been on Pred. At least I am now seeing a specialist, she seemed to think that I have had GCA since I started on this journey and I guess that I have always thought that this was the case, you know when something is not quite right. So a bit grumpy but a few beers this evening and an early night will make things better tomorrow.

All the very best to you all

Hi again John

Yes, it certainly did always sound as though GCA had been suspected at the outset hence the start at 40mg.

I'm surprised that with the eye symptoms you are experiencing you haven't been increased back up to 40mgs - perhaps blood tests will show that things are under control at 30mgs but it will be important now not to consider reducing from 30 until the eye symptoms in particular have well and truly subsided.

Yes, it would be unusual to go through a temporal artery biopsy at this stage as the steroids will probably have already reduced any enlarged cells that are indicative of GCA (hence the name Giant Cell Arteritis).

It isn't surprising that you feel grumpy after the past few days and you deserve those beers this evening - enjoy! :ale:

Very best wishes and do keep in touch.

MrsO

Hi Mrs O

Thanks, enjoying a beer and feeling better already, thanks again

John