Still going......

[Linda3009]

Hi all.

I thought I'd let you know how things are going over in pred-free land

Following a whirlwind reduction from 40mg to zero in 9 days, I find myself completely exhausted.

It's much much worse than before I started on this whole journey.

Also, I've now got quite a bit of pain from my shoulders, knees, hips.

Heavy legs and arms too.

Of course, some of these things were dismissed by the Rheumatologist as being pred side effects and now he says they're due to pred withdrawal 🤔.

On the plus side, hamster cheeks are marginally reduced.

A fortnight on, and my GP got in touch today to ask which speciality I want to be referred to next!

You really couldn't make this stuff up....

Will keep you updated.

Many, many thanks for your support this far.xxx

[DorsetLady PMRGCAuk volunteer]

Hi

No wonder you are exhausted - your Adrenal glands don’t know what’s hit them. Is anybody monitoring them for you? If you’ve been on Pred for more than 3 weeks- which I think you have - then you are in danger of an adrenal crisis.

The pains you describe are typical of GCA/PMR - but can also be signs of adrenal fatigue.

Personally I would be heading for A&E to get it sorted.

[Hidden]

I can only support what DorsetLady has said. Please seek medical help adrenal crisis is not to be trifled with.

nhs.uk/conditions/addisons-...

[SheffieldJane]

Please seek another Rheumatologist to properly diagnose you. As DL and PD say the quickest route might be A&E. The specialist you saw does not follow any treatment protocol we recognise.

[HeronNS]

Thank you for updating us. I echo the others. You need to be seen by someone who knows what they are doing, not meaning to be rude, but he is putting you at risk.

[powerwalk]

Good luck with it all, please look after yourself and i totally agree with all of above replies. Let us know how you are doing.

[Longtimer]

Nothing surprises me anymore with Rheumys....find another, good luck...

[Linda3009]

Thanks for the (as ever ) sage advice.

I'm on holiday in deepest Wales just now with sketchy internet cover.

My OH is on adrenal watch . 🙈 And I'll check in again when I can

Xxx