Hi - I was diagnosed with GCA 19 months ago, starting with an 80mg dose. Now I have to have two hip replacements.

[venezia1]

I am lowering as fast as I can as they won't operate till I'm down to 10mg. I've got as far as 14mg, but my bloods markers are up. Since I got down to this dose a couple of weeks ago I've started to get a very swollen face again - I think this must be due to the GCA not being so well controlled - had anyone else had this experience? I still have the swollen abdomen from the steroids, which shows no sign of going away, though my GP said it would. I'd be grateful for any comments.

[Celtic PMRGCAuk volunteer]

Oh dear Venezia, I do appreciate you are probably suffering and desperate for the new hips, but "lowering the steroids as fast as you can" just isn't a good idea, as you are already discovering. You need to get back to whichever previous dose (or just above) was controlling the symptoms and the blood test markers as quickly as possible otherwise you will need to increase even higher. More importantly, you need to get on to the correct dose not just to relieve the symptoms but to protect your eyesight as well. I, too, had a very swollen face at PMR/GCA diagnosis but luckily all the flares I had during the course of the disease were related to the PMR and not the GCA. Unfortunately, the abdominal swelling side effect doesn't really improve until quite a bit lower than 14mgs, but I promise it will improve eventually.

[venezia1]

Thanks, Celtic, your measured remarks are always worth reading! When I said I was lowering the steroids as fast as I can, I meant that I had been on 15mg for quite a few weeks, then was told by my rheumy to drop 2.5mg - within days I was experiencing the bad head pains and stiff jaw I had had originally. So after going back to 15mg and leaving it a while to stabilize, I dropped by 1mg, and have been on that dose for two weeks. I feel OK, (my background condition is RA, not PMR) but am a bit worried by my bloods - I certainly won't be dropping any more for a while, and then by alternate days. It just takes so long!

I was relieved to hear that you also had the swollen face with GCA as my rheumy doesn't recognise that as a symptom.

Thanks again for your thoughts.

[tomasina]

Hi Venezia,

I think you will find it is the steroids that are giving you the "moon face", which is a side effect of steroids, but as you gradually reduce, and I emphasize gradually, this will subside. 2.5mgs. drop from 15mgs. seems too fast. I have only dropped by 1mg. per month, and although I know you are anxious to get your surgery done, better to delay to get your GCA under control. Well worth the wait. Good luck and chin up.

Tomasina x

[venezia1 in reply to tomasina]

Thanks Tomasina - I am dropping by 1mg but it's bringing abck GCA symptoms so am going to have to stick for a while.

[Falkers]

I have had two new hips this year. Got my steroids down to 6mg before the operation, Everything went well and I am walking really well, Well worth waiting for. I am on 5mg after

the op as the surgeon said not to rush lowering the steroids. I am seeing my Rheumy in a couple of weeks so hopefully he will tell me to reduce further. Good Luck.

[venezia1 in reply to Falkers]

Thanks, Falkers - so glad it went well for you. I'll try to be more patient!

[Celtic PMRGCAuk volunteer]

Hello again Venezia

"I was relieved to hear that you also had the swollen face with GCA as my rheumy doesn't recognise that as a symptom"

Well all I can say to that is that your rheumy didn't meet me at diagnosis - I could post a photo but don't wish to give everyone nightmares!!! Apart from the 'hamster cheeks" side effect of the steroids, if the temporal arteries are affected in GCA (aka Temporal Arteritis), then it's possible that the inflammation in those temporal arteries and blood vessels is high enough to produce swelling.

Another thing to remember when the blood markers suddenly increase is that if any of us are harbouring any sort of infection, then that can also have a knock-on effect on the markers for a while. I don't know when you are due to have your next blood tests but perhaps you could bring the date forward and have them repeated for reassurance.

That's a very reassuring post from Falkers for you, and well done Falkers.

[optimist-ok]

Hello Venezia. I also had the 'moon' face when on a higher steroid dose. It does go down as they are reduced. I did get down to 5mg after 2yrs & lost some weight all over (thankfully!) so it does happen, but then had to double the dose & have gained weight again. At least we know things do get better! Take care.

[venezia1 in reply to optimist-ok]

Thanks, Optimist, and I shall look forward to losing the extra stone and a half, too!

[jinasc]

venezia1

You wrote "my background condition is RA". Methotextrate is the gold standard treatment for RA and it is also used as a steroid sparing agent (mainly for PMR). Normally they don't start to use it till you are on 10mg. I think you need to talk to all your Consultants, or they should talk to each other.

It maybe that the Methotextrate could help both the RA and the pred reduction, but as it is GCA this must be closely monitored. You could also discuss the use of other steroid sparing agents, ie azathropine (I would avoid Cyclosporin if possible) or Llefudomide. (spelling) but this must be discussed with your medical people collectively and not individually. None of them cure GCA or PMR but sometimes they can be useful.

[venezia1]

Hi Sambucca and thanks for your comments. I have been on Methotrexate since diagnosed with RA on 2009. It was stopped for a few months when I was first put on steroids, but I have been back on my 20mg self-injected Metho ever since. I don't have two separate rheumys, though! The Metho does seem to be helping me feel more "normal". I have blood tests done every week so I can monitor the CRP and ESR, which has been doing well for a couple of months but shot up this week after I dropped 1mg steroids! Trying to be patient but it's hard.