Lethargy!

[Lyndaki]

Hi, after 5 & a half years, I have been off prednisolone for around 2 months now. Yes, I am experiencing aches & pains but not the same as I had at the beginning of my PMR/GCA journey…old age at 75 I guess & nothing that paracetamol won’t cure! But what is really getting me down is lack of energy & motivation. I also feel very “flat” & rather emotionless. Could this just be a symptom of my adrenals stuttering into life? My rheumatologist told me if I had any signs of the PMR returning to take 2.5mg pred to clear it up, but could this help here? And if I start on pred again, do I have to reduce slowly again? Ant help & advice would be very gratefully received thank you!

[piglette]

The adrenal glands can really complain, they did for me. I just gave into them.

[Lyndaki in reply to piglette]

Thanks…I’m just feeling a bit fed up with myself I think!!

[piglette in reply to Lyndaki]

I know the feeling!

[Lyndaki in reply to piglette]

😟

[DorsetLady PMRGCAuk volunteer]

Definitely sounds like adrenals, and really only time will get them going again - but it might be worth asking for a early morning cortisol test [GP surgery] just to gauge what their condition is. Won't say if they are working, or how well, but if they are capable of doing so.

It can take anything up to a year for them after finishing Pred to be back at full function. In the meantime, just pace yourself as you did with you illness.. plus you must remember you are considerable older and less active that you were pre PMR..

But you have to decide if it is just that and life [although if paracetamol helps would suggest it is] or a return of PMR.

[Lyndaki in reply to DorsetLady]

Thank you. I’m back in U.K. in August so I will try to get the test done. And yes, I’m probably just being impatient!

[HeronNS]

If your aches and pains are controlled by paracetamol it might be wise to avoid taking pred. Taking pred will slow down the recovery of your adrenals.

If you continue to feel this way, ask for complete bloodwork (if it hasn't been done yet) in case it is perhaps something like an iron deficiency, or some other cause of fatigue. A morning cortisol test can show if your adrenals are working.

As matter of interest, what was your dosage and taper rate at the time you stopped taking pred? I did quite well, been off pred since February after 8.5 years, but my final tapers involved a very slow introduction of zero days into a base level of half mg.

[Lyndaki in reply to HeronNS]

thank you. I was in 0.5 for quite a while then did the slow taper from there…ie one day in one day off, one day on 2 days off etc. Rheuuwas happy with recent bloods when I saw him 3 weeks after stopping pred.

[SnazzyD]

If it is adrenally related then it isn’t the adrenal glands coming to life, it is that they aren’t doing their bit 100%. It was a good 18 months before I could reliably assume I wasn’t going to get the weak Wobblies and that was after a year messing around between 1mg and zero. I would find that I was ok in a run of the mill week but add in a shopping trip here and a medical trip there in a week and I lost my mojo. Vague fluey aches and pains, feeling flat and yet easily upset with no get up and go were part of my every day.

There is no other option than to wait it out patiently without knowing when it’ll come good and that the hard part, no knowing. Taking Pred to feel better is tempting but it just means your adrenal axis gets the message that it doesn’t need to try. It is a balance because one should not get to the point of collapse so I tended to rein in my life’s activities, which were already pretty low, to avoid having to take extra Pred. Sometimes, even if you lie on your back all day, life can become stressful emotionally and needs cortisol too.

[Lyndaki in reply to SnazzyD]

Thank you. I really didn’t want to go the pred route so you’ve confirmed that. As you say, patience is obviously key!