Pain

[Jane-s]

Oh dear. I have terrible pain in my shoulders upper arms and back .Pred now reduced to 1- 1.5 mgms , consultant wants me down to Zero by Christmas.

My question is could this be a flare and could it be stress related.? My granddaughter has recently been diagnosed with Anorexia which has had a devastating effect on all the family

Should I increase Pred? I feel my GCA is rumbling away a bit with earache, clicking jaw but it’s the generalised pain and headache which is so difficult to cope with. The spinal surgeon says he can do another decompression . I’m not thinking about this yet as my granddaughter is so I’ll . I just want to be a support to my daughter ands family.

I’d be grateful for any thoughts or advice , please

[PMRpro Ambassador]

Whether the consultant wants you on zero pred by Christmas or not, it is not in his gift. The underlying cause of the GCA/PMR governs that and nothing he can do will influence it. Added to which, the dose you are on is possibly enough to cover adrenal function but not when you are under stress as you are. 1mg is often enough to manage a low level of disease activity but zero is a step too far.

I would have a long and in-depth discussion with a sympathetic GP - you may not need to fight with the consultant if the GP will support you in the meantime. The last thing you need is a showdown with either the consultant or the GCA/PMR when your family needs no more stress.

[herdysheep]

I do not have experience of GCA but from a general point of view, reduction in dosage when you are experiencing pain (and stress) is not on, regardless of what your consultant thinks. If you are feeling so awful your abilities as a support become more limited. Worth a chat with GP and/or consultant? You certainly don't want GCA flaring with risk to sight.

Others, better versed will be along soon. Good luck.

[Jane-s in reply to herdysheep]

Thank you so much PMR pro and Hardy sheep. Yes , I’ll try and contact the GP. . Anorexia is awful and had to know how to help but I need to be in a better state to be useful to the family

[Sharitone]

If your GP doesn't help, do you have access to a rheumy helpline? Will be thinking of you and your granddaughter.

[piglette]

Your GP may want you down to zero by Christmas but the PMR may not agree with them. I do wish doctors would use common sense a little more and not cause their patients unnecessary pain.

[Jane-s]

Thanks for all the useful comments. It’s very difficult to speak to a GP. I spoke to the nurse but we were very much ticking boxes I left a message for the rheumatologists. No reply yet. The pain in the shoulders and earache make me more inclined to go up to 2.0 mgms. Absolutely not zero yet.

In the meantime concerns about granddaughter remain the same. Thanks for all the support

[Maisiek]

So sorry to hear about your grand daughter. I’ve just had a phone consultation with Prof Dasgupta ( the last, he retires in March) and he plans to aim for 2mg Pred then stay on that long term.