Loads of questions, number 2

[Stroppymoo]

I am getting VERY upset about developing GCA. GP said unlikely, but maybe it's being played down. Should I start learning braille now just in case. Only on 15mg pred.

[Stroppymoo]

My fear is that you have to wait for hours upon hours in A&E, and then it'll be too late. For example, I had a perforated stomach ulcer last year. Ambulance came and went away, saying see your doctor in the morning. Anyway, eventually got to hospital and had 36 hours of tests. Then 97% of not seeing the next day. I simply don't trust nhs to react quickly enough!

[polkadotcom in reply to Stroppymoo]

I go along with your doctor very, very unlikely and 15mg of Prednisolone is the usual starting dose for PMR, some docs give 20mg. I've had a GCA diagnosis since 2006 (2005?, find it hard to remember) and I haven't been rushed to hospital yet - nor am I likely to be. Well, not for GCA anyway.

I know of patients who have gone through the whole process of GCA and steroids and are now in remission. I've known of patients who have rocky rides down the PMR/GCA road but are now down to minute bits of steroid.

And I know of those, like me, whose journey more resembles an obstacle course run at high speed, who are on a maintenance dose of Pred for life.

You could always do some learning about PMR/GCA which might help. The PMRGCAuk website would be a good place to start.

[Celtic PMRGCAuk volunteer in reply to Stroppymoo]

Stroppymoo, please do not get in a state about developing GCA. Worrying in this way is just causing you stress, and stress is something to be avoided like the plague as PMR loves it!

I have had both PMR and GCA and have been in remission from both for 4 years.

In an odd way, I feel that those of us with 'just' PMR are lucky in that we have usually all heard about GCA and know the signs to look out for.

I can understand that your previous experience has left you feeling jittery about the emergency services. However, we have found them first-class on several occasions when called out for my hubby in recent years, so do just try and remain positive and, as polkadot has said, trust your Dr on this one.

[Stroppymoo in reply to Celtic]

I'll have 2 keep reading this post till it sinks in, but thank you so much. I do painting as a hobby and can think of nothing worse than sight loss.

[annie_marie]

Hi stroppy moo. As previous replies have said, try and avoid stress. I have had pmr & gca for a good while now. Currently on 60 preds for the forsee able future as I have had four massive flare ups in the last six weeks total down to stress (my own thoughts ). I also paint and the thought of loosing any sight is very scary, but be encouraged by the medics, if iis gca they are very quick on whacking the gca with steroid which calms down amazingly quickly. Hope this helps. Stay positive.

[lindyloy]

It is worrying, I was being treated for what my G.P. said was PMR. which after 7 months developed into GCA. I went to A&E as instructed, and they gave me steroids just in case which reduced the swollen arteries in my temples almost immediately, I was then told by a Rheum. that I didn't have it and I was taken off the steroids. She was really good as I didn't have the classic signs, I had an ache in my jaw when chewing, loss of appetite, weight loss, but no vision problems, and no tenderness in the temple arteries, I could also lift both arms above my head. After about one week back on Naproxin, I started to have what I would call wonky eyes, my vision didn't match at both sides and when bending down, I had on rising, a shade across my right eye half way down, I also had zig zag lines passing across my eyes. I rang my G.P. and my husband went to collect more steroids on his instructions, I then saw a Rheum. within 2 days, they were really good, my eyes returned to normal almost at once, this was 8 months ago, it isn't easy, since then I have been on constant alert when tapering off the steroids, but we all go through it so don't despair, I was sent for a PET-CT scan which was worrying, but fortunately all was o.k. It's a rocky road but everyone supports each other, Sorry to go on but good luck and try to not worry too much.

[PMRpro Ambassador in reply to lindyloy]

Those ARE classical signs of GCA - only about 17% of patients present with headache as the primary complaint, only 40% have headache at some time. Tenderness in the temporal arteries is also found similarly. You can have severe GCA without any signs or symptoms - it is called occult GCA.

[lindyloy]

PMRpro, I also need to thank you for your advice on the PET-CT scan, the Rheum. said no additional inflammation was found and it was all o.k. I was quite worried, teach me to google and believe every thing I read in future!

[PMRpro Ambassador in reply to lindyloy]

What you found was perfectly good info - just not the whole story. I think that is what the doctors often have against patients using google and the internet. When you know how to apply the filters it is OK, but without some sort of map to guide you it can be a problem. Even on here there are some things that are a bit wobbly - because the people posting them are not able to make that differentiation. But in the end it usually works out fine.