tapering issues

[Amilee]

Recently tapered down from 5.5 to 5 of prednisone, seemed to go alright but about 3 weeks on 5 mg I started to see low moods,upset stomach,severe tiredness,lightheaded,and some aches and pains in muscles and joints.Also been waking up at 5 am and unable to sleep. At the same time as my reduction I have been under a lot of stress so that could be making things worse! Question is this my adrenals being slow ? And should I start another taper to 4.5 or wait until they catch up.

[PMRpro Ambassador]

I would say it is your adrenals lagging behind - especially since you say you have had a stressful time too. I can feel the difference in a day I have been dealing with Italian bureaucracy!!!! Or a UK bank ,,,

[Amilee in reply to PMRpro]

I feel it’s slow adrenals ! Should I stay at 5 mg until it settles or keep reducing

[123-go]

Hello, Amilee. Stress can play a big part in the PMR journey and this may well be the cause of your current problems. Please have a look at this posted in FAQs by MrsNails re a flare or adrenal problems:

healthunlocked.com/pmrgcauk...

[Amilee in reply to 123-go]

Thanks for your reply,I’m just unsure whether to keep reducing or wait until I feel better

[DorsetLady PMRGCAuk volunteer in reply to Amilee]

See my reply below

[123-go in reply to Amilee]

Exactly as MrsNails has said. I would never reduce while experiencing pain. Best wishes 💐.

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

MrsNails may have collated the FAQs - but the posts contained therein are by others… this one happens to be mine…

[123-go in reply to DorsetLady]

So sorry! Multi-tasking ⚽️ : big mistake 🥴.xx

[PMRpro Ambassador in reply to 123-go]

And many are mine. It looks as if they are MrsN's because due to the way HU works only one person could post the collated version and add to it later.

[123-go in reply to PMRpro]

Lesson learned.👍

[DorsetLady PMRGCAuk volunteer]

123-go has kindly linked my post on adrenals - I would just add don’t taper for a while - give them a chance to catch up. 3-4 weeks at least.

[Amilee in reply to DorsetLady]

Thank you for advice,I don’t post very often but I read on here most days! The site has been a tremendous help to me over the last 3 years! I value all your opinions above any doctor! They have been very poor in my case,it took six different doctors to diagnose me ,after care none existent!

[MiniSpec]

Whenever anyone tells me to taper over a period of weeks, I treat the word 'weeks' as though it were 'months'. So if the doctor says to reduce once every three weeks, then I reduce once every three months instead.

It's better for your body to stay at a level it can cope with until all the creases are ironed out, before even thinking about upsetting the apple cart again. If you don't let things settle properly between tapers then your body has to readjust once more while still trying to adjust from the last upset, and the constant strain on your system will build up the stress until you pop.

It's your life and your body, so don't be bullied into doing anything that will cause you pain or distress.

In my case I recently saw a rheumy for the first time in 13 years. The first thing she told me was that I don't have PMR! So I asked her if she'd told my PMR that as well.

She wasn't best pleased that I answered her back, but as far as I'm concerned, the label is irrelevant, it's the symptoms that are real, and while I still suffer from the symptoms of PMR, or Fred, or Ada, or any other name you choose to give it, I'll continue taking the one drug that seems effective in overcoming them.

[PMRpro Ambassador in reply to MiniSpec]

Given she'd never seen you before - how did she know? Obviously a "if you've had it this long it can't be ..." devotee.

[MiniSpec in reply to PMRpro]

Definitely! She lightened up when I said I wanted to be off Pred, but I'm still not convinced she's accepted that the symptoms are those of PMR. We'll find out when I next see her in October, and I'll keep you all in the loop on that one.