It’s now 02.45 am. I was at work all day and will have to get up in 3 hours for work.Its been another restless sleepless night. A couple of days ago I started another DSNS taper from 5mgs to 4 and a half mgs of Prednisone.I feel a bit odd..vague and distracted and with that muscle heaviness / tingling in my arms and legs.
I would like to ask how will I know if my 5/4 mgs is enough to cope with my level of PMR control without the Adrenal gland’s additional imput.? I think that the normal level of cortisone is about 7 so if my Adrenals aren’t working surely 5mgs won’t be enough for my body? What does it feel like when the Adrenals start to wake up? Sorry I hope someone can understand my questions it’s a bit hard to explain what I mean.
One other thing I’d like to ask is that I remember when I was first diagnosed with PMR,the Doctor said that when I reduce my Prednisone dose that the pains in my back and base of skull will return.Well they have .So do I ignore those pains as they are not associated with PMR,and carry on with my taper or stay at a dose that deals with them?
Thank you.
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Dewdrop456
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Hello. Sounds like quite a trial. I’d love to know what your symptoms would be like with a week’s worth of good sleep under your belt. Working a full day on little sleep on top of having an autoimmune condition as well as being at the low end of steroid taking isn’t a recipe for an easy life.
As to your level of Pred being enough at your current dose or not, it is hard to say because it is a personal thing. You have to go by whether your PMR symptoms come back or not.
From personal experience I’d say you know when the adrenals start working because you feel better. I felt awful from about 7.5mg with slow improvement to 5mg with 3mg being the sweet spot. Below 3mg it got harder again so I had to slow down to allow my body to catch up. When I say awful I mean, terribly tired especially in the morning, emotional, unable to cope with anything (shaking & overwhelmed), fuddled brain, weak, nausea and upset gut. I also craved salt and sugar. My GP arranged for a Synacthen test at 4mg and the results were that my adrenal glands could work but not whether they would work to order. My cortisol blood level was fair but not exciting. This was definitely shown in the way I could feel ok then suddenly, I couldn’t cope and had to sleep; I couldn’t plan anything.
My worry is that you are pushing your body too hard at this delicate time. Is there a specific reason you are not sleeping? Can you take some holiday just to rest and catch up so that you can see the wood for the trees? Currently, it looks like there are too many factors to know what’s happening with you exactly so getting off the treadmill will help. Remember adrenal insufficiency is not to be trifled with and can be life threatening; it’s not a case of powering on through bravely. A visit to the doctor is in order to get a referral to an Endocrinologist to see where you’re at.
If you haven’t already done so, this is a helpful guide to adrenal insufficiency (secondary)
Dear SnazzyD,thank you so much for your kind and detailed message.I was worried that I might taper too low for my body’s needs.The sleeplessness is a real bother but it’s not every night thank goodness.Thanks too for sharing your experience,it’s very interesting.
I might have to take some days off soon or I will loose them. Even then I will have to get an awful lot done.This really has to be a very stressful few months for me.
I had the back and base of skull pain before diagnosis .The Pred removes it but I still don’t know if it belongs to the PMR.I don’t want to take a higher dose to cope with pain unless it is the PMR.Tricky isn’t it.
Thank you and thanks for the link.You always post great replies.
The adrenal gland has nothing to do with it - the pred replaces the cortisol only because the body doesn't make unneeded corticosteroid when enough is present. Just like your central heating thermostat knows that the wood stove is heating the living room so the boiler can switch off. As the amount of pred reduces, the body starts to produce a top-up - but actually experts in London published work recently that suggests that as little as 2 or 3mg is plenty for normal function. It is emergencies that MAY cause difficulties when there isn't a surge in cortisol - and that is why it is suggested we take a bit more pred in the case of infections, accidents or emotional upheavals. If we are shown to have poor adrenal function sometimes we are given emergency kits of hydrocortisone. But I doubt you have to worry about it.
As far as your PMR is concerned - if you are on a high enough dose, you won't have symptoms. If you go too low then they will appear, but that is a separate thing altogether. Your sleeplessness etc could be due to the adjusting adrenal function and the best thing to do at present is slow the reduction right down, use a slow taper and only drop 1/2mg at a time, staying at a new dose for a month or two before trying another step.
I haven't a clue what your doctor means - obviously another with a faulty crystal ball. Did they say what the back and skull pains were due to? Obviously pred dealt with them - which might make ME suspicious they are due to PMR and you shouldn't reduce further or you may risk a flare.
Dear PMRpro,so sorry that I haven’t got back to you to say thank you for your answer.I eagerly read your reply straight away but have only just been able to snatch time to post back.Sorry .I really value your knowledge advice and support.
Now I can understand the process better.I wondered why we need to updose in certain circumstances.
I did indeed linger at 5mgs for quite a few weeks but eventually decided I’d better try another taper.I do only drop by a1/2 mg. And actually this time after the first drop I panicked and have decided on 1/4 mg drops for the rest of this period of DSNS. I know the PMR is still with me and as you advice us we need the right amount of Prednisone and hurrying won’t change that!
I was also interested in your comments about my back and skull.The pain from both sites was present before the PMR diagnosis.It would be good news for me if they WERE associated with my PMR in as much as they might go when the PMR goes. I wasn’t looking forward to them being present when afterwards.Could they be,however ,some other condition which is been masked by the Prednisone?I suppose you won’t be able to tell me ..Xrays of both sites do not reveal anything .
The back and skull symptoms COULD be caused by muscle tightness/spasm, especially due to myofascial pain syndrome and that is often found alongside PMR, it is due to the same inflammatory substances but they are concentrated in so-called trigger points in the large muscle groups, in the shoulders, about rib level and in the low back. For me they improve at higher doses of pred but then reappear as I reduce. If they are approached with other management options I can get to a lower dose of oral pred. And no - they won't show on imaging although sometimes the effects may be in that really tight back muscles can lead to a worsening of scoliosis for example.
If your adrenals are waking up properly you won’t know, as everything will carry on as normal, the adrenals will take over from the pred. It is if they do not wake up properly you will know as you will have awful fatigue. If you are having more pain than before things are not right and your dose of pred may be too low.
Thank you very much ,that is interesting and very helpful. I did read your reply straightaway but have only just had a minute to reply! Best wishes to you and thanks again.
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