Needing advice

[christine2715]

I have GCA and was doing well, reducing from 60 to 45 Pred. The rheumy doubled my Azatroprine (Pred sparing) and I don't know if it is the reason why but I got a serious flare and all my old symptoms back. I cut the Azatroprine down to two per day and I seem better but it's hard to tell whether it's just the GCA or the Azatroprine. My rheumy is very good but off ill at the moment but I have an appointment with him on Wednesday. I have been on high dose Pred for nearly two months and the plan was to cut down further. It's frustrating to have no point of contact and I just hope I am doing the right thing. Was told I could contact mt GP but they seem to know little about this illness. Havnt got a headache but a stiffness and pressure across my temple. It doesn't help my case that I am very inclined to do too much. We had to move the Queens 90th birthday street party into our house on Sunday which resulted in a lot of work. It's so difficult isn't it.

[DorsetLady PMRGCAuk volunteer]

Hi Christine,

Looking at your previous posts, and 2nd to last sentence above, I think you are still doing too much! However much you want to, or feel you can do, the fact is you cannot be as active as you were pre GCA. The drugs play their part in controlling the inflammation, but you must do your bit as well!

I never took Pred sparing drugs so cannot comment on their effectiveness nor their side effects, sorry. Just wonder why you were put on them, you don't seem to have been having too many problems before.

Hopefully you can get some advice from your Rheumy next week, but as I've said - a lot is down to you. I know it's difficult to accept, but unfortunately you have to realise this is not going to be over in a few months, and you have to adjust your life to be able to control it, rather than ignore it and go on as usual. I'm not being unsympathic, but realistic!

[christine2715 in reply to DorsetLady]

I know you are right but I find it so hard having had a lifetime ofy being a grafter and I am rubbish at delegating. Will have to try harder. Resting today!

[DorsetLady PMRGCAuk volunteer in reply to christine2715]

I know, because I was/am exactly the same! Believe me - it is difficult to say no to things that in the past you've done without blinking an eye.

But what you have to say to yourself is - I am going to be in control of this illness, and yes I might have to change my ways a little bit to accommodate it, but I won't let it rule me.

So, to do that you have to be a bit more gentle with yourself, and even though it's against your nature, let others do the hard graft. That doesn't mean you have to stop thinking for yourself, in fact exactly the opposite! You have to think - if I do such and such what's likely to happen? Aahh, I'm likely to over stress myself and could bring on a flare. So what do I do to stop that happening? Do it a different way, or get someone else to do it.

My dear old mum used to say - "it's no good getting old, if you don't get artful with it" - she was very good at getting people to do things she couldn't - without them feeling sorry for her, or her feeling guilty in asking. I'm working on it - but don't think I've mastered it yet😉

[PMRpro Ambassador in reply to christine2715]

We are almost all the same - but there is no real way of getting round it bar learning to rest, or at least learn to pace yourself.

GCA is not to be compared with a cold - it is more like a very severe dose of flu that goes on and on until it goes into remission. If you had real, proper good going flu, or if you had been in hospital with something you wouldn't expect to carry on as normal immediately. GCA is much the same. You WILL be able to do more later on - but you will have to learn to manage your spoons:

butyoudontlooksick.com/arti...

[betty1943]

Please take everything on board that Dorset lady is saying to you. You have to put your old life on the back burner (which is almost turned off) and plan a new life which consists of plenty of rest and quite a bit of peace and quiet. If you don't do this the whole process will be longer and up and down. We have all been there and wish you all the best, we will be with you all the way. I have been through GCA myself and just beginning to see the light after almost two years. It will come if you help it.

Best of luck and every success.

[Pat46]

So pleased I read these posts because I was beginning to think I was being a but soft with myself when that awful fatigue/achy feeling came over me, seemingly from nowhere. It seems as though this is all part and parcel of the condition, so I'll stop feeling guilty about my need to stop and sit down. I'm finding it really difficult to get my head round this condition, I don't know what to expect so don't know if the days I feel bad is to be expected or not. Thank every one if you for the advice I read on this site.