I'm finally down to 3mg, and just about to slow taper to 2.5mg. I've had PMR since March 2019, and a few flares.
My question is this: the occasional extreme tiredness, anxiety, low mood, and irritability: could this be a lack of adrenal function? Is it worth asking for a test? And if the test highlights a problem with my adrenals, what is the treatment or course of action?
Thanks
Your symptoms sound very much like the adrenals being cross at being woken up. Steroids are used if your adrenals do not wake up properly. If you are having symptoms I would not try and reduce until the symptoms improve. I stayed at 5mg for several months.
I seemed OK at 3mg, but I dread a flare so I'll stay there another couple of weeks.
And I do like the thought of my adrenals being cross. That's how I feel much of the time!😆
I think mine may have been very angry!!
😆 I'm slowly tapering to 3mg pred but thought morphing into a grumpy old man was normal.
Not saying nuffink! 😳
So is it adrenals or old age to blame?
I love that you said your adrenals being cross> perfect!
All those can be symptoms of low adrenal function and they can either be constant or random depending on whether your cortisol output is up to requirement and consistent. Around your dose level I found I was ok pootling about at home but couldn’t sustain it if, for example, I was out and about.
I was seen by the Endocrinologist at 4mg and 1.5mg with a Synacthen test prior to each visit. The first showed ok but not special function, and the second was pretty good. However, although I could tell I was much better, I was easily overwhelmed. Even when the adrenal function wasn’t ideal, the only suggestion was to keep challenging the body with consistently low cortisol levels and keep reducing. They wanted 1mg per month and I refused because I was barely coping at home as it was with 0.5mg every 6-14 weeks. So, there isn’t a treatment as such, just waiting and trying not to over do it so much one gets an adrenal crisis. Sometimes they change you to hydrocortisone, a less potent corticosteroid, but this may not be sufficient to hold back PMR inflammation. Really it’s just time and that can be weeks, months or in my case a couple of years.
A quick blood test by the GP can tell you what your level of cortisol is in the morning when it is supposed to be well up. A Synacthen test in hospital mimics the adrenal glands being called upon to work by the pituitary gland. This will say whether the glands will work with maximum shouting at but not if the rest of the process eg. in the brain, is working reliably. It’s a start though.
Thank you. I think I've had a few difficult days and it shows: some tough gardening that left me exhausted, and family tiffs that have been trying. As well as a small car accident and a long train journey to visit my 94 year old mum. All while doing special Christmas themed exercise classes....
Goodness, that would do it. Gardening was a complete no no for me for quite some time.
Oh my goodness! No wonder your adrenals seem out of sorts, I'd have crashed halfway through what you've accomplished!
Christmas themed exercise classes?
What is the course of action? I'm afraid it is just stick it out until the adrenal glands decide to wake up! There is nothing that will speed the process up and while adding a bit of pred sorts the symptoms all it does is postpone the crunch moment. All you can do is slow your tapering process down and cut back on activities and commitments in the meantime. That timetable you describe makes me feel tired just READING it!!!
Oh dear I think you’re right. I’ve always been a busy bunny. Right through PMR other than the first acute weeks. Luckily I can relax after my last class on Wednesday for nearly 2 weeks. 😁
hi. I had the test to see .. well, a cortisol test and it was just fine. Turns out was just tired and crabby! ha. I think it is always worth checking and finding out if there is something. Just having this disease makes us tired though, even though on low prednisone. since we STILL have it. GOOD Luck with whatever you decide and I know you will get some REAL advice from others!
general advice on adrenals and only way to nudge them in to action is very slow taper, small steps, time and patience -
healthunlocked.com/pmrgcauk...
I’m now planning at least another month on 3mg. I’m very happy to Go Slow if I get there in the end with minimal problems.
👍 you will!
When this happened to me whilst coming off Pred for PMR alone the Endocrinologist was going to put me on 20 mgs of Hydrocortisone instead of 3 mgs of Pred. It mimics the action of our own Adrenal function and apparently helps the recovery of it. Unfortunately, it is not great for the symptoms of PMR that you maybe experiencing still. I was diagnosed with GCA at this time so didn’t actually have the hydrocortisone.
I'm not suggesting it isn't your adrenals but I started feeling incredibly tired (and husband says increasingly irritable) in about August. I had just got down to 2mg.
Turns out it was probably the start of GCA.
Be kind to yourself and listen to your body.
Hi i have just had basal cortisol done recently and it was 195 i am taking 3mgs at the moment.I started pred also in 2019 for Polymyalgia.I came off pred almost two years later but symptons returned so back on pred.I was advised to let Rheumy know if my first test was below 300.So i am waiting to hear back as gp is informing them.I will get word to attend hospital for next test.Hopefully it will be soon as feeling fatigued and anxious.Hope you will get on fine.Merry Xmas.
At about 4mg I plunged into the deathly fatigue syndrome...I waited until there was some slight improvement before tapering to 3.5....it meant waiting months. It also took months the next 0.5 mg drop etc. Over a year later I am dropping (with slow taper) from 1.5 mg to 1 mg...and no adrenal problems (as yet) even when rushed off to hospital with a mild heart attack!
I managed to continue working (online) but very tough...cooking (enough to keep fed), cleaning (enough to maintain sanitary conditions) but aboslutely nothing else. Felt like the walking dead...perhaps the walking-very-slowly dead. BUT it has passed. But I am still very far from the hyperenergetic person I used to be (I can scarcely remember that former me).
Adrenals are a law unto themselves. You might be fine when you go to 2.5 then at the next taper they are cross again. But eventually it will resolve. It sounds like you are pushing yoursefl. I'd be inclined to say listen to your body and mind and build in more rests and relaxation, and techniques to take yourself out of tense situations. Adrenals (well mine anyway) appreciate some daytime snoozes and quiet time before rejoining the fray. I don't know if you're doing a slow taper, but from 2.5 I am going down in quarters.
Thanks, that’s my plan too. Go down slowly by 0.25. Plus more downtime
cortisol test
Waking up with fast heartbeat - no Cortisol
AM Cortisol Test
Cortisol test
Fatigue and cortisol test
