Pain.

[Zellamze]

How do you cope with the pain? Sometimes I can't get out of the chair and bend down without being in deep pain, it hurts so much it makes me cry. Nothing takes the pain away. I am now on 12mcg and thinking of going back up to 15mcg as that worked. Seeing my consultant next week. I can't function and feel so upset. 😟

[DorsetLady PMRGCAuk volunteer]

Hi Zellamze,

As you are seeing your consultant next week, I don't think it would do you any harm in increasing to 15mg for next few days. At least if that gets rid of the pain, or a least the majority of it, you can tell him/her that at the next appointment. Then you will have a pain free (hopefully) basis to start again.

If you don't already, I would keep a few notes so you can explain what hurts where and when, and what, if anything, you may have done beforehand that could have caused it. Much better than a vague description, and it may come in useful further down the line.

I know what you mean about the pain and crying with it - I was like that before I was diagnosed, and wouldn't want to go through that again.

[Chespoll]

Hi

Just to wish you all the best.

I've been having a bit of a tough time too at the moment.

If its any help, for me I think it was caused by reducing the preds too quickly, and then not stabilising each dose for long enough.

[tina-shelley]

Hello Zellame, I agree with Dorsetlady and up your dose to the last dose were you pain free. I believe you could be having a flare, which is were all the inflammation returns because you are not taking a high enough dose of preds to keep it under control.

I don't know what your reduction plan has been or when you were diagnosed but 12mgs is clearly not enough right now.

Regards, Tina

[PMRpro Ambassador]

If you are in pain and it is definitely PMR then you are not on a high enough dose of pred. Which is either because you have reduced too far or you are having a flare - did the 12mg every work? You cannot reduce to a timetable, you can only reduce in line with your disease activity and if it is high you will need a bit more pred. If you try to reduce in too big steps you will get pain as the dose changes but it should improve over a week or two. If the pain is that bad either you are on too low a dose or you have something else besides PMR - and that is something only the rheumy can decide.