I am 65 and have had PMR since 48 , been up and down on prednisone for all that time. Have been either hyper or fatigued. I have never found a happy medium. Soon as I lower it takes weeks to try and settle ( 8 weeks ) Then I give up and increase again . So after all those years I have made it to 5 mgs. But the fatigue is terrible . When I stand up my legs feel as they are going to give way. I push and push myself to cope, my husband shops , cooks I just can muster the energy to be leading a normalish day. Go to bed at 9 pm can’t get up in morning as feel drugged. I have been reading about adrenal insufficiency. I totally understand that I am not in crisis or have any major adrenal problems. But wondering if it’s possible my cortisol is lower than should be . I just , won’t to move forwards and start feeling energy in my body . Thank you for listening
Understanding origin of weakness : I am 65 and have... - PMRGCAuk
Understanding origin of weakness
You sound like I have for a long time....a year or so....I knew something had changed.....My excellent Rheumatologist agreed to a Pet scan....we knew then I had to have a cortisol blood test, because of not seeing inflammation on the scan...
Have you had any tests to see what's going on....if not, please try and get them arranged. You have had this too long!....good luck...
Very interesting reply, can I ask if you are in uk. Only that I have never heard of a uk rheumatologist using a pet scan to look for inflammation. Mine just takes blood for CRP and ESR if that’s normal then there can’t be inflammation. And many Drs don’t believe in adrenal fatigue only crisis. Hope I am not appearing rude. It’s just all so confusing around all the factors of what causes debilitating fatigue.
Maybe have a read of these FAQs if you haven’t already, and as suggested please get yourself tested -
You are explaining me! My body is just shot with fatigue, painful legs like led. I am 6 years i to this and been told i have adrenal insuffiency after having a synachten test. I am on 5.5mg (rheumy thinks 5 but i put it up a bit). I dont know what the answer to it is as nothing is changing! If 5mg is the go to for adrenal issues its not doing much for me! Like you early to bed and im falling asleep like a drugged person every time i sit down all day. You are longer on this never ending road!
Love the name “ power walk “ ha ha you wish. I am up late for tennis but will pay for it tomorrow. Anything past my normal has to paid for. I am staying on 5 mgs as the Pro says , no point in reducing anymore it’s failed to many times and I just keep going up and down from 3.5 to 6 mgs . Wishing you good luck on your 5.5 mgs
It really sounds to me as if you have been trying to reduce too erratically in the past. It helps to reduce in small steps and at not more than monthly intervals - may even need to be slower. You have to be very aware of a return of symptoms because even 1/2mg can be the difference between being OK and not. If you reduce in bigger steps you overshoot and the inflammation flares and you end up in trouble.
But now you are at a dose where your body has to top up the pred dose with homemade cortisol. That means you have to be very patient at a dose that is not quite enough for everyday "normal" activity. At 5mg it is likely to be pretty borderline - just low enough to prod the feedback system which is what is needed to get slowly back to proper function but also still enough for that prod to be quite gentle. You do have to adjust to it - it would be better if you went back up but that would mean that normal function is even less likely to return and you will be stuck where you are.
Pushing through will just make you feel awful - it is all about pacing and patience.
healthunlocked.com/pmrgcauk......
Yes I understand the process of reduction, and have done and failed many times over the 15 yrs of my illness. I have never been back to 10 mgs after the first few years. But been fighting at between 7 mgs and down as far as 2 mgs . I don’t think I can ever accept that this is me now, broken and exhausted, always fighting to achieve at least something in my day . Just need to moan today, feeling sorry for myself. . After all these years of illness you just end up smiling at friends and saying “ just one of my days “ it becomes exhausting for them as well to be around someone who doesn’t appear to be listening and joining in. That’s how the exhaustion gets you. Unable to be social . Anyway don’t need to tell all of you, your in or have been in same situation.
I have to wonder if you really DO understand how to apply reduction to yourself. The sums are one thing - the physiology is another. And fighting isn't the best way to go about it because that is stressful - and PMR and stress don't make good bedfellows, whatever the stress is. Acceptance is the first step to living well with any chronic illness and perhaps even more so PMR. Acceptance isn't giving up, it is being realistic about your situation and making the best of it.
7mg is a physiological dose, a similar amount of corticosteroid to what the body makes in the form of cortisol and which is essential to function day to day. Below that dose you aren't only managing the PMR, you are also waiting for normal adrenal function to return. After 17 years on pred the chances of adrenal function returning quickly is very low - it could still happen though most doctors would suggest it is unlikely. DadCue on the forum regained adrenal function after 12 years so it is possible but I suspect that was pretty exceptional. There is probably not a massive amount of point your aiming for significantly less than 5mg - and if you work on that assumption, you may well find life a lot more comfortable and enjoyable.
Oh dear did I make it sound like I wanted to run up the road or swim a mile. I just want to wake up in the morning and feel some energy and awake. I do have a routine of light exercises but that has to be a mental fight . I cant just get up and lay on the sofa each day. I decided some weeks back after reading reports on here that I would be staying at 5 mgs . As you say after all these years of struggling to get off steroids , there seems little point if I have to repeat the increase , reduce process every few months.
Please stay at 5mg if you can tolerate that, because you have been on pred for a very long time, but only lower VERY slowly!.....you are feeling as I do....my head is out there...but my body dosen`t follow....if you know what I mean....I am surprised you haven`t been offered a Pet scan, after all those years, similar to MRI, but not noisy!.....this would show if you have any inflammation in your body....just because your blood tests don`t show inflammation dosen`t mean you don`t still have it....many people don`t have raised markers....I didn`t...
I am trying to be positive that one day my adrenals will start to work, at least to some degree anyway.....but this extreme fatigue is difficult to deal with I know...
I have a good rheumatologist that I can discuss and agree the next thing to do, I hope you have, because it makes a lot of difference!
Ps, yes I am in the UK....
Good luck, and keep us posted how you are doing....
Thank you for your reply , I am staying on 5 mgs but at the moment it still feels it’s not enough. Are you feeling better now . Since reading lots of the info I am going to re talk to my GP no chance of speaking rheumatologist. There is a year long waiting list for referrals , unless your urgent. It’s just a hard situation to be in . So nice to chat with others, but now we have a country full of long Covid suffers competing for go and medical services support
It does sound like your adrenal glands are not happy at being woken up. I had the same problem except I was completely collapsed in a chair! I was on 5mg too. You really need to sit it out as otherwise you hit the same problem when you reduce again. I must admit I did go up to 6mg as I really was deathly fatigued. Then stayed there until the fatigue improved before cutting down again.
Thanks yes, the deathly fatigue, just can’t give into it. Terrified of being labelled as fat and lazy . Think I even accuse myself of it. I am not even driving at moment as can’t hold my concentration. I just count my blessings that I don’t have to work, and don’t have money worries , Goodness how people cope if they do .
I must admit I often think how lucky I am. No real money worries although I am careful apart from lashing out on cashmere sweaters.
I know exactly how you feel!! I am completely off prednisone since 4 month, as my doctor absolutely wanted it and in the beginning I had more days as you prescribed them, I always thought, it's an flare up, it's coming back, but the symptoms disappeared, it must be the adrenal function, it's now much less often, and less severe, but you must work on it, get physiotherapy, do some exercises, I hope there are days you can do them, every time a little more, that helped me, not sure, i'ts an good advise, we are all different.
Thank you , yes , waiting to settle after a 1/2 mg reduction takes weeks and weeks of feeling something is wrong. In fact it has often been almost to my next reduction time and some times I haven’t reduced again as not feeling any better. I do a modified “ salute to the sun each morning ,” few bits of deadheading and tinkering in garden, and perhaps a small walk in afternoon. But those few things are forced out of me . I really don’t understand the adrenal function thing .
So pleased you have cracked it , I have tapered down so many times in my 15 yrs always following the regime, and also pausing when I was struggling. But on the insistence of my rheumatologist and GP had to persist to 0 mgs . That would then cause me to have flare ups , but they were pain , stiffness flair ups . Not this continual dreadful fatigue , muscle weak , brain numbing feeling. That never leaves me. There has never been any mention of adrenal insufficiency as the cause. In fact I have read that most of the medical world don’t believe in it. Only the adrenal crisis, which as you stated is a pure medical emergency. Which would happen if you suddenly stopped a higher dose steroid , when your adrenals are not be asked to produce any cortisol , and your suddenly without any circulating cortisol. Thanks for listening
understanding the origins of weakness...what a good heading. I'm a newbie since June. On 40 mg and envy your 5mg but concerned. PMRpro and others have the gen. on it so listen, I am. I know nothing yet about tapering but something on fatigue. You've been on steroids for 15 years. It's a muscle wasting drug. I've been on it less than 3 months and the loss of muscle is startling. If you lose muscle and continue to try and do stuff like normal you are day by day going to notice a reduction in capacity and an increase in fatigue. There are two types of fatigue. Simple exercise where the muscle responds and the lactic acid which builds up during use needing to be cleared. It causes discomfort and in extreme use pain. This is healthy and providing your blood and lymph are working you will clear this if you rest and stretch the affected muscles. Look up stretching exercises, there are many sites and most useful.The other is trying to make your body do what your muscles are no longer able to sustain. That's where you probably are now. The answer is to very gradually rebuild your muscle mass. That is going to be especially hard given the time frame and likely loss. Others on here may be experts on this rebuilding muscle mass. If you do try please remember that it won't be a fast process and will involve pain but not the crippling pain of PMR. You need to work wasted muscle to grow and that will hurt but good hurt. When you have more you will be able to do more. There's more to it but that is a start. If you are already on a program then apologies for butting in. Lie I say, I'm a newbie and still coming to terms with what it has done to me.
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