Recurrence

[nh_user_461444]

When GCA was discovered over 5 years ago, I was put on to 20mg immediately, in hospital,  it worked immediately  Thereafter fairly frequent visits to Rheumatology at the same hospital.  A couple of months later I suddenly developed PMR, nobody had warned me about it so it was very frightening.

Since then I have been on Prednisolone, gradually trying to lower dosage.  This has usually brought back symptoms if I take the dosage too far down.

Eileen told me previously that it is not always wise to go down too fast, although I thought I had been doing that.

However, I have recently been having lots of tummy pains.  A few months ago I had a check up in my intestine and all seemed to be okay, but I've had abdominal pains further up for a few weeks now.  I now have to be scanned this week, then have an endoscopy in a weeks time.  I'm beginning to get a bit frightened of the possible results.  However, again, since a few weeks, I have started to get my PMR back again, PLUS slight pain in my jaw which usually ends up giving me a headache, similar to migraine I had for years.

Doctor took a blood test and says this is not GCA and has given me antibiotics as he had seen a little inflammation in my ear, but they have made no difference at all.

All this on top of the abdominal pains is wearing me down.

If any of you have suggestions or have had similar conditions I would appreciate hearing from you.

So far taking my Pred up one mg is easing that, plus massage,

I had my eyes tested a few months ago.  The optician knew to check for vision damage relating to GCA, but there is no sign of difficulty there.

We don't have an easy time of it, do we?

Fingers crossed please for my two hospital tests this month.

[nh_user_12898]

Good luck - until you have the results there isn't a lot more to say.

However - you are aware that abdominal pain can be a sign of LVV (large vessel vasculitis) in the trunk? The fact 20mg worked originally does suggest, to me at least, that it wasn't straighforward GCA - how was it diagnosed and why did they decide to use a PMR-level dose?

If you are still on pred it is perfectly possible for your blood markers to remain "normal" although there are plenty of doctors who don't know that. I had my suspicion this was so confirmed by a rheumatologist.

[nh_user_461444]

Hello Eileen, thank you for your early reply

I think I've been wrong saying that my original dose was only 20mg. It all started more than five years ago and I don't have any notes anywhere as to what I was on when I left hospital. I had gone to a&e one night because I had been suffering from a very bad migraine which had lasted much longer than usual and not responding to my medication

I was asked lots of questions, then told it was almost certainly temporal arteritis and that I was being admitted immediately. I was put on a high dose maybe more than 50 and kept in hospital for 5 days. I got a real fright because I had never heard of the condition.

My migraines did not recur so I can only think there had been some link beforehand. The headaches had been confirmed as migraines previously and they started at puberty.

However as I said, the headaches happening now with relation to lower jaw and ear do feel very similar to migraines, great sensitivity behind the ear and on the head etc but I can at least get rid of them with two paracetamols.

Thank you for your good wishes Eileen.

[nh_user_12898]

If a couple of paracetamol sorts it - unlikely to be GCA I think. But who knows!

[nh_user_1048803]

Good luck lorna37853, when I was first diagnosed with PMR, I did not keep a log, but now every evening before bed, I log the day. Wish I did that last year. Hang in there!