So been down to 5mg Prednisolone for over 2 months now for PMR and seem to go up and down in terms of aches in my ribs , shoulders and hips. They are not severe and would be more than manageable on their own but it’s the awful fatigue .
Two weeks ago I actually felt completely normal for the first time in over a year while on holiday but following a bike ride , admittedly 10 miles but easy , I completely crashed in terms of fatigue and can’t pick up .
I don’t want to believe it but do you guys think 5 mg is just sailing too close to where I should be, desperate not to increase the dose .
If that’s the case how much do you think I should go up?
Thanks for your support
Written by
5goFlotilla
To view profiles and participate in discussions please or .
Normal adrenal function will probably never return if you go to a high enough dose to feel well all the time - the ONLY trigger to the adrenal glands to produce cortisol to top up the pred dose comes about by that pred dose being lower than the amount of corticosteroid needed for the body to function well. You have to compromise on what you can manage to do so you can function on a low enough dose of pred to stimulate the HPA (hypothalamus, pituitary, adrenal) axis to start up adrenal function again. You have to go through it at some point in order to be able to get off pred,
We talk a lot about resting and pacing and not overdoing things as that can set you back a long way - which appears to be what has happened. You need to discuss it with your doctors as to whether slightly more pred may help you recover in the short term - but in the long term you will have to cope on a lower dose of pred.
Thanks for prompt reply PMRoro that’s my concern I don’t want to Yoyo and realise I have to get my Adrenals working and the only way is by reducing the dose .
If only we had a crystal ball , if I could know that this will take a month or whatever then you can just hang in there .
My fear is if it’s a flare am I doing my self more harm than good by sticking on this dose .
See my Rheumatologist in 3 weeks , GP’s are kind but not very forthcoming in advice . As mentioned before my Rheumatologist has said I don’t have PMR🤬 purely because my ESR and CRP were normal because they were done after I started Prednisolone. My conversation has to be well what have I got when I see him because I certainly have all the symptoms !
Once again thank you just not sure how long to hang in until I pick up a bit .
Incidentally your analogy of the inflammation and the empty bucket is excellent .
The markers are irrelevant once you are on pred anyway - and up to 20% of patients have markers that remain in the normal range - but they still have a pred-responsive myalgia which is similar enough to PMR to say it IS,
If the symptoms increase, that might suggest a PMR flare. If they are due to adrenal sluggishness, they will remain stable or improve over time. If you flare because of being on too little pred, then the markers might go up, but no guarantee.
Thanks PMR Pro I did get my GP to test ESR , CRP and early morning Cortisol while I was feeling rubbish and they all came back in normal range, we were trying to establish Flare or Adrenal issues . Will stick where I am for now and see how it goes , especially as my main issue is the fatigue .
Just because your cortisol is in normal range, doesn't mean it is enough for extras or that the adrenal are providing spikes to cope with extras - or even the afternoon boost that normally happens - reliably and consistently. It will improve but may take a while.
Two weeks ago I actually felt completely normal for the first time in over a year while on holiday but following a bike ride , admittedly 10 miles but easy , I completely crashed in terms of fatigue and can’t pick up .
As discussed probably a combination of adrenals struggling - and maybe just a tad too low on the Pred if you are have aches and pains [but joint pain can be a sign of adrenal insufficiency] so yes at such doses it is difficult to tell.
Unfortunately no one can say how long it will take your adrenals to get going again - mine stuttered and faffed about for 8 months or so. Luckily I only had random bouts of fatigue and none of the more serious affects than many have, and did continue a very slow taper, with steps of 0.5mg.
I’d be inclined to stay at 5mg and give the adrenals a chance by-to catch up, but obviously if the aches and pains intensify, and seem more consistent with PMR then you may need to treat as a flare.
Can't really offer helpful advice, but I do understand what you're going through. Possibly my current position will give you some encouragement. I had a time, early 2021, when I thought some pain I had was caused by osteoarthritis. But for the first time physio didn't help. Only when I decided to take more pred to see what happened (realizing after quite a long period of suffering, I think it was a couple of months) did I experience relief - very much like what I had experienced in the beginning of PMR/pred. It took me about a year to get back to my former low dose and since then have been dealing with adrenal reluctance. But I am back down to 1 mg which makes me happy, and no PMR niggles when I take .5 and each time I do that the resulting fatigue becomes less than the time before. This stage will, I think, take a very long time, and I plan to keep a supply of pred on hand maybe forever, just in case, after I finally (hopefully) achieve zero pred!
Incidentally my CRP soared higher than it had ever been when flaring in 2021 so markers did work in my case. Think I was taking doses around 2 and 3 because I was in denial about it being a PMR flare. It didn't take too long at 10 to get things back to where I wanted to be, but tapering below the 7 or 8 level took a while. Now CRP is down to something like 1, which islower than it ever was before.
I think it all fell apart at the bike ride. We active ones tend to rate intensity of exercise with too much reference to our old standards. The trouble with low adrenal function as explained above, is that one can be coping on a quiet day. If one then demands the adrenal glands pay out more cortisol to deal with a sudden increase of stress or activity they can be ineffective. An ‘easy’ bike ride is like a marathon if one’s cortisol output isn’t up to snuff.
To add to Snazzy's comment - if I do more walking in the day I can feel quite wobbly next day. And also if I have an emotionally "busy" day, sorting out tax, banking, something that triggers memries of my husband, I can feel really unwell that evening and even worse next morning.
Talking about bike rides, I did 20 miles on Friday last week, half of it in the lowest gear (a slight but relentless incline), and it had to be done very fast as we started too late (we were on holiday with two teenagers). The whole next day, I was shattered, even though I was coping impressively well on the day. This is on 0.5 mg every fourth day. My adrenal function is fine, but I clearly pushed myself too far. I hope this is all it is for you as well, and you will continue to improve once your muscles recover.
I stayed on 5 mg for 6 weeks at least and I remember going down to 4.5 mg extremely slowly, so good luck.
5mg was where I suffered most, mainly with fatigue. But there’s light at the end of the tunnel…hopefully! I’ve just managed to get from 2 to 1.5 & fingers crossed, ok so far! Good luck
Thank you Lyndaki my difficulty is I have been at 5mg for almost 3 months and can go a couple of weeks feeling OK then out of the blue knocked off my feet . For some reason this time is worse I feel fatigued but different I terms of a little wobbly at times all
My numbers are all “normal” …. It is helpful to know others have travelled this same road and got to the end 🙂
Typical of adrenals struggling - seem okay for days, and then -even the slightest thing they remind you they are not functioning at anything like normal capacity... very slow taper, small steps down on the Pred, resting when necessary, time ..and patience will get you there. something else that can't be rushed.. even after you've taken your last dose of Pred - can take between 6-12 months to be back to 100%..
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.
Flare?
Is this a flare?
Flare?
flare?
Flare?
