Adrenals?

[Millymolly64]

Hello everyone, well I was diagnosed in January this year, started on 15mg of Prednisolone and have slowly tapered to 6mg. My journey has been a bit bumpy but I think I've got off quite well when I read some of the posts on here and what others have gone through. However I've been on 6mg for just over a week and I feel really rough. I have lower back pain, am nauseous and sometimes have a dizzy spell when I get up from bed or from a chair. Am I correct in thinking its the adrenal insufficiency causing it? I'm still working full time and because I don't look particularly ill I don't think people understand my condition. I have been allowed to work from home occasionally to their credit though. If it is adrenals should I ride it out until hopefully they kick in? Or up my pred a bit? It's almost impossible to get to speak to my GP (who diagnosed me), but I think the advice on here is far superior anyway.

[DorsetLady PMRGCAuk volunteer]

It may well be adrenals struggling - have a look at this - healthunlocked.com/pmrgcauk...

But it could also be you are trying to go below the dose your disease actually needs……as you only started Pred in January, wouldn’t say taper has been particularly slow.

Whatever it is, a really slow taper - 0,5mg a time and one of the following will help -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Millymolly64 in reply to DorsetLady]

Thank you Dorset Lady, all very helpful. Think I'll go up a tad for a while and see if I feel any better and then start slow taper

[PMRpro Ambassador]

It could be adrenal function being a bit sluggish in catching up - been an almost identical post recently.

If you were only diagnosed and started on pred in January you shouldn't take long to catch up - but the only way to get it to happen is to remain at a lower dose of pred than your body wants. If you go back up, it will only delay the process. Can you talk to your HR department and see if they can arrange a period of part time or something else that may makeit easier? I suspect full time working is just a bit much at the moment and that might help.

[Millymolly64 in reply to PMRpro]

Thank you PMRpro. Can't go part time so the compromise is to work from home occasionally. They don't understand the condition unfortunately. OK I'll persevere for a bit longer with a very slow taper see how it goes 🙂

[DorsetLady PMRGCAuk volunteer in reply to Millymolly64]

Have a look at this -citizensadvice.org.uk/work/...

And maybe send them relevant parts of this -

healthunlocked.com/pmrgcauk...

[Millymolly64 in reply to DorsetLady]

Thank you, that is most helpful. I will certainly print off and give them relevant bits to help me and in case someone else comes down with PMR in the future

[PMRpro Ambassador in reply to Millymolly64]

It comes under disability legislation. If they don't understand - they must be educated and Occy Health services consulted.

I imagine if suitable compromise can't be reached - it could come under constructive dismissal if it got that far. Or you just go off sick.

[Millymolly64 in reply to PMRpro]

Thank you PMRpro

[PMRpro Ambassador in reply to Millymolly64]

Oh - and have you a union?

[MiloCollie]

Hi. Well done so far! It took me 13 months to go from 15mg to 6mg. I was lucky enough to be able to stop work but understand that part of your life must be difficult. Communicate with work. Keep your own notes and records. Keep OH and HR in the picture. Are you in a union? Put yourself first. If you NEED to go to work then let something else go e.g. send out your ironing or get a cleaner maybe. Take some time to think about things and try not to worry too much and stay away from stressful situations. You’ll get there! 🥰