OK, So the good news is that after around 2 years with GCA and PMR I am down to 2.5 of the much-loved pred. No increased pain, ok stiffness a bit but no headaches and I am functioning, or I would be if not for this dreadful all-consuming exhaustion.
I went to my GP who did the usual blood tests, all came back within normal ranges but this feeling of near collapse is anything but normal. I haven't got ahead of myself and done anything, in the past when the pain has been gone I have got busy but not now. Now emptying the dishwasher is a task which calls for a seat. Has anyone got any ideas of what is going on?
I am really hoping its just a phase and not another illness but have anther doctors appointment in 2 weeks just incase he can come up with a why and a fix!
From what I've learned here (and from personal experience) the dreaded 'Deathly' Fatigue seems to be a conspiracy of both PMR and steroid tapering side-effects, even if / when the PMR pain and stiffness have abated. It's so difficult to understand Cause and Effect in this complex process...
No doubt, the experts here will give you a more scientific rationale for this. All I can say is, try to Roll-With the fatigue, pace yourself physically and mentally - and be patient regardless.
My best (and I stress, amateur) explanation for this type of Fatigue is because the body's / physiological 'energy battery' (complex adrenal / hormonal-system function etc?) is, hopefully, slowly restoring itself after a severe 'battering' - both from PMR and the artificial cortisol (Preds) to combat the PMR symptoms. And, so, it takes a lot of adrenal energy for the body's natural hormonal equilibrium to get back to normal too - hence the fatigue?
That's my best shot at an explanation, if it helps. You seem to be at a very low dose of the Preds now, and after a relatively short time from your PMR onset compared with many here. So, to my mind at least, your outlook looks good from my (again, amateur) perspective - despite the dreaded fatigue in the meantime.
Try to keep smiling, I'm sure you'll soon get plenty of more helpful replies to your post
Would hazard a guess it's most probably adrenal glands not working as they should - personal experience!
It does take time for everything to get working again, even once you've got off the Pred. Although you haven't been on Pred as long as some, if you were on high doses at the start, that doesn't seem to help the system get back to normal either.
Might be worthwhile requesting a Synacthen Test - that will check if your glands are capable of working- unfortunately it doesn't prove they are actually working - but at least it's a start and something for the doctor to work on.
In the meanwhile you just have to keep up the pacing!
Ask for a Synacthen blood test to measure your Cortisol levels. This exhaustion maybe because your Adrenal glands are not functioning as they should. It is normal to take about a year to fully recover from what is a pretty serious systemic illness. Perhaps you will just have to rest often for a while. Sitting to fill the dishie does sound extreme though. Is it all the time? Or after exertion?
Has your GP not heard of adrenal insufficiency? The normal blood tests won't show anything.
While you were taking more than about 7mg pred your adrenal glands do not produce any more cortisol as it gets feedback it is not required. Once you reduce to this level they have to start topping up the pred dose to the amount your body requires to function. It is a very complex feedback system and takes some time to settle down, for some people longer than others. And for a very few it doesn't return or takes a very long time.
The others have mentioned the synacthen test - they take a baseline reading or cortisol at 9am, give you an injection which should stimulate the adrenal glands to produce cortisol if they are able, and check the cortisol again after half an hour and sometime a couple of hours. It shows if the adrenal glands are CAPABLE of producing cortisol. It also shows if the amount is enough. It isn't entirely accurate while you are still taking pred but is a good indication. What it doesn't show is whether the entire feedback system involving several organs and hormones is functioning well.
Endocrinologists and some rheumatologists think it is better to switch from pred to hydrocortisone when the patient gets to below 5mg. That is one approach, isn't essential for many patients but it does allow for a more accurate result with the synacthen test.
But frankly - I wouldn't wait 2 weeks, I wouldn't reduce any further either. Go back to your GP, suggest post-long term steroid adrenal insufficiency and ask him to please arrange a synacthen test. There is a current thread from karools who has just been diagnosed with adrenal insufficiency which I think you should read:
This isn't "just" fatigue, it is possibly a symptom of a potentially serious condition which really mustn't be ignored. You may be managing (just) day to day tasks but if you were put under severe stress of any sort you could become quite ill. We are actually ALL at risk as long as we take pred at lower doses, say under about 10mg. But even at higher doses if under stress the extra "fight and flight" spike isn't there and we might not cope well. It is the reason for sometimes taking more when under stress - surgery, infection, physical or emotional, it is all the same.
Sounds like sluggish adrenal system. Be careful, you could collapse! You still need Prednisolone until the Adrenals come back to life and produce its own Cortisol, having been sidelined while you've been using the artificial form. It can take a while for them to wake up. I got stuck at 5.25 for ages, but am now managing to get down to 5mg and its all been about the shocking fatigue. Look up Adrenal insufficiency and you will see the symptoms. If it was me, I'd go back up to 4 or 5 and see if that's better, then reduce DSNS to give your adrenals a chance to wake up.
Thanks everyone, I had to take additional pred early this morning and feel so much better for it. Next is a new appointment with the doctor which I am dreading, getting him to listen is almost as much of a challenge as the illness!
Sounds a reasonable confirmation of our suspicions! Good luck. If he won't listen is there another in the practice you could try?
If push comes to shove - I'd call OOH and ask to speak to an on-call doctor about it. Tell them how ill and fatigued you feel and how more pred helps. They get a lot of business for adrenal crises - even the paramedics are totally up to speed on that.
You and me both with exhaustion and I'm still at 7.5/5mg alternate days. I am sure the advice given is correct I have an appointment with my GP soon so will suggest following the advice given here. I will also be resting a lot more! All good wishes.
Thank you to everyone, I really appreciate this room where I can speak about how I feel without guilt. It's been a hard and tearful 2 years, my husband, a very practical man (engineer by both nature and profession) has never been ill in his life and isn't good with talking or listening about feelings. Which of us really want to be the person who dumps negativity on friends ? So, either I talk to my dog or horses, wonderful listeners, or, just talk in my own head. Here I know everyone understands, and your support is a priceless safety net, both in terms of advice and for the feeling of community and warmth you all engender.
Hehe - bet we provide more practical advice than the dogs though!!! No, mine's a medical physicist and I'm told by a colleague he was wonderful with patients. The girls and I just creased with laughter
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Any suggestions for starting Leflunomide
Any suggestions to help ease pls 
Suggestions for Achilles Tendonitis
Frustrated re Symptoms suggesting GCA
Changing the timing of Pred and that 2:00 am suggestion
