I'm down to one mg Pred after diagnosed with PMR back in Aug 21. We killed that with 50 mgs initial dose and now I'm down at one mg per day. I take that one mg between 0700 and 0830 every morning. It's been a battle to get here and I've had some shocking episodes of desperate, crushing fatigue, but its been worth it.
However, during the reductions there have been times when I was feeling energetic and far better motivated than I am at present. I was expecting better at this low level of one mg. I don't feel as if I'm going backwards but I certainly feel disappointed that I'm no longer improving. NB - during the reductions I've only ever had very minor pain flares but MAJOR fatigues. But the last few weeks has seen sporadic good days with several tired and disinterested days. e.g. I can sleep 9 hours, wake up, have brekkie and then suddenly feel that I can't face the day, no energy and no interest & back in bed for another hour or more! It's like my adrenal system hasn't woken up with me! When I'm finally "awake" I can kill the day, carpe diem style. But before that starts I'm a disinterested zombie wreck.
All my life I've been regarded as a high achieving "go-getter" but these days I find myself actually calmer, quiet and simply nothing going on in my head whatsoever! Not sure if that's a good thing or a bad thing! I often feel as if I'm stoned on something but I'm not!
Notes - I was recently put on a CPAP machine for severe apnoea. Also the doctors unintentionally found coronary artery partial blockages, (my second heart attack on its way?) To get my weight down after Pred, I've put myself on a diet and I've severely restricted my drinking alchohol. I've lost 5kgs in two weeks. I also now suffer rhinitis like I'm drowning! Also had constant wet eyes since the Pred reductions lately.
Question - is my lack of energy down to the effect of low Pred medication combined with a still low functioning adrenal system? Is this intermittent tiredness an expected result after being on Pred? Alternatively, is this problem due to my heart issues, being overweight, dieting etc. It's confusing having so many issues being found by modern medical methods!!! I'm male, 75yo and live in Australia, ex-UK. Thank you all.
Hello from the UK. I can’t sleep so here we go, but I’m sure you’ll get some good replies when Europe wakes up. looking back from 9 months, you reported fatigue before and the replies pointed to likely low adrenal function and would still stand how. It is common for the adrenal axis to still be sluggish even now, which is why we are meant to carry our steroid card for a year after stopping steroids in case of an accident and the risk of your body not being able to make enough life saving cortisol in the moment. I’m off Pred since Aug 2020 and found that I had episodes of low function for a good 18 months. Sure, it took more and more stress to suffer insufficiency but I couldn’t rely on it. None of this is particularly unusual but doctors forget to tell you or don’t even think about it. One is given the expectation that in low figures the world becomes your oyster. What you could do is ask for a cortisol test, either a morning basic reading or a Synacthen test which simulates the chemical stimulation from the brain to see how your glands respond. I had one done at 4mg which wasn’t special and one at 1.5mg which was ok on the day but given a busy day and my adrenal glands definitely didn’t cope very well. On good days we often try to go for it only to feel wiped out the next. It is a case of being patient and responding to how you feel until systems come back on line or if not you need some hydrocortisone to help.
It is very common to find go getter personalities on this forum and it is a common lament that once we did this and that and we try to drive our bodies back into previous ‘service standards’. They don’t say PMR isn’t life changing for no reason. I’d say for nearly all of us, we’ve had to accept that changes have to be made, not least that often the age we are is no longer deniable. I don’t mean giving up, but taking stock and accepting that perhaps life needs to be reframed in order to avoid repeated boom and bust and lowered quality of life because we have stuck to our old benchmark and identity. This usually means we have to start listening to our bodies instead of dragging it along with whatever we decide to do or put into our mouths.
You have done very well to have got to 1mg in about 18 months with no PMR symptoms rising up, since for most the autoimmune activity that causes the symptoms usually takes 2 years and usually more to fizzle out. If you have any residual activity that may also cause fatigue. Trying to work out whether it is autoimmune activity or adrenal insufficiency or both is the tricky bit. Both respond to one taking the foot off the accelerator pedal and going with the flow. If you’ve had Covid in the past year, don’t underestimate that either.
Regards diets, it is good you are trying to reduce because it’ll help on all levels, particularly cardiovascular but I expect you’ve been told this. Low carb is what most people find is good with Pred but many don’t find this out until later. Low adrenal function can make one feel sluggish, cause low blood sugar and low sodium. Avoiding refined carb hits (fats ok) avoids the rollercoaster.
Have you had a set of routine bloods lately for inflammatory markers, blood sugar, liver, kidneys etc? Just to see if there is anything else in the mix. Vitamin D is another one worth checking. It might also be worth reading or re-reading the adrenal section in the FAQ’s on the right here.
Right, it’s 4:40am time for bed, thanks for keeping me busy.
Thanks everybody & thank you DorsetLady. I hadn't seen that link before but I do recall someone making a brief note on how long it can take for adrenals to recover. To me, its odd that in these late stages or Pred reduction, only now am I suffering loss of appetite. I'm grateful for that as it will help with my diet changes and alcohol restrictions. PS the drinking was getting really out of order, even for an Aussie! But the other oddity is that I don't miss it much. I can only give my adrenal insufficiency the credit for that! I'm so calm & "mindless" that I don't need a drink! Silver linings in dark clouds?
"We killed that with 50 mgs initial dose " - if only that was possible, but it doesn't work like that and it is a chronic disease process that goes on for some time before burning out, sometimes shorter, most times longer, but many men do get through faster than women.
"It's like my adrenal system hasn't woken up with me" - got it in one, According to research at Imperial in London as little as 2mg is adequate for day to day functioning. You are at the tipping point now and your adrenal function is unreliable - it is said to take up to a year after stopping pred entirely before the function is reliable.
And I hope you are right - but remember that 1mg can be plenty to manage low activity PMR and it is possible that it is still lurking and having some effect.
Thanks PMR Pro. Sorry about the poor turn of phrase there. I'm aware that Pred doesn't cure PMR, it just stops the inflammation & pain.
Trouble is - there are patients and rheumies who think it IS like that. And I do think that it might not be a bad idea to start with a decent dose - the running scared of pred, low starting doses and far too fast reductions don't do patients any favours.
you mentioned wet eyes. Unfortunately pred gives you 'dry eyes' the wetness yoou describe is not actually good lubrication. Get drops for 'dry eyes' it will help. Hopefully one little problem solved...good luck with all the others!
The longer you are on pred. the longer it will take your body once off them to adjust to your so called normal life again. I was on pred. for 5.5 years, now off them for 18 months and still have days that are not right.
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