I have, over the last 3 months, managed to reduce to 5mgs of Pred and have been at that dose for a month. I have become increasingly tired, lethargic, emotional and generally low for some of that time although PMR doesn’t appear to be any worse.
GP ordered a variety of blood tests, and it would seem my C ortisol level is 103 which he says is low and I should go up to 7 again and has referred me to an endocrinologist.
I’m really disappointed to lose all that recent gain!! Do any of you experts know whether that is a really low cortisol level? I’m sure it will be sorted out with my endocrinologist but as we know it could be some time before I get that appointment!!!!
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Hirwaen
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It IS a really low cortisol level - BUT it is because you are still on 7mg of pred so the body probably isn't requiring any more corticosteroid to function and isn't making it. While you are above about that dose the body uses the pred and makes no cortisol. As you reduce the dose the body's HPA axis (hypothalamus, pituitary, adrenals set up) has to start coming online and produce a top-up of cortisol It doesn't happen overnight, it can take months and the only thing that encourages it is being at slighly too low a dose of pred to prod the system into life. And putting up with the fatigue that comes with it I fear.
Even an endo can't do anything about it - there are no magic solutions and at best they would switch you from pred to hydrocortisone which works in the body for a shorter time and can be used 3x daily to mimic normal adrenal function better. Unfortunately HC doesn't manage the inflammation of PMR as well as pred does - if the PMR is still active, it will poke its head above the parapet. Either HC or pred does the same job for the adrenal replacement so if you have PMR, pred is probably better.
Your GP's action of upping the pred dose is absolutely the wrong response to poor adrenal function when it is secondary to chronic use of pred, that just switches it off again with no encouragement for it to get into training again. Most endos would refuse to see you at all at this dose - Longtimer's rheumy has been struggling to get one to see her for months and they aren't interested. If it were me, I would stick with the 5mg if you can - that is just low enough to prod and it should improve over the next few months. Were you reducing 1/2mg at a time before? Did you immediately develop the fatigue at 5mg or has it progressed?
Snazzy has written some excellent posts on getting through this stage of pred reduction. Some people never meet it, others get exhausted and can barely function. How you deal with it relates a lot to your own personal situation and how much support you have.
I’ve been on 5 mgs for approx 6 weeks and feeling pretty dreadful, made worse by breaking a bone in my foot!!! When I get an appointment with the endocrinologist, when being the operative word!!! I will lower before hand and follow instructions immediately before the test. I have good support from my oh but also have a son who you may remember lost his wife last year and has 3 young children and needs our support. You are right, I should stay at but just at present it is all too much to cope with!!!🥴
That is absolutely fair enough I think - but that broken foot probably has increased your need for corticosteroid, if your adrenal function was OK it would have produced more cortisol to deal with the stress of the injury and healing. Not to mention the awfulness of the last year. That you have got this far is amazing.
Just to add to the above, I began to feel pretty awful about 2 weeks into the 5 mg dose and did reduce by half a mg. I’m over 5 years into this disease, have osteoporosis, just broken my first bone so am eager to get off pred asap!!!
It would be defeating th object as the replies here have said if you raise pred again! I am feeling exactly like you on 6.5mg dropping to 6....my first cortisol reading was 92, now 124.....which is still very low....but no way would I raise pred, I'm just sticking with it, very hard that it is. I went this morning for my shingles jab, a doctor who I hadn't seen for a long time arrived at car-park as we did, she asked how I was!....I told her adrenal suppresion....her answer...drop pre d very very slowly....she is the second doctor in last few weeks I have seen in the carpark...so if we need to see a doctor face to face.....now we know where to meet them!!
I just became comatosed at about 5mg, I did go up to 6mg as it was so bad. I did not want to go up too much as the problem would happen again when I reduced. I then stayed on 5mg for at least three months before I woke up a bit.
I agree fully with getting a endocrinologist involved. If it was happening to me I’d increase the Pred dose by 0.25-0.5mg increments and see how the ( adrenal related) deficiency symptoms lessen (don’t take it to the degree they go away). From the 2 papers I’ve read on the subject the patient needs to accept those ‘mild’ symptoms for awhile as part of recovery. An Endocrinologist can help with that assessment of what magnitude of those symptoms are safe.
Probably meaning will be treating the PMR separately from the AD. That is lower the Pred so still no pain from that disease while giving a different steroid for the Adrenals.
While I don’t remember it all, it’s possible to treat both simultaneously and it’s possible (hope not) where PMR goes away, yet you’ll have to take the other steroid for a long time or worse case for the rest of your life if the Adrenals refuse to wake up. Not all steroids are alike…🤷🏼♂️
"lower the Pred so still no pain from that disease while giving a different steroid for the Adrenals"
That doesn't really work - corticosteroid is corticosteroid and the doses add up. You can treat both at the same time by using pred, it is equally suitable for adrenal replacement therapy. The reduction in pred must be balanced against the PMR symptoms - if they allow a reduction then you can get low enough to encourage return of cortisol production. Many people need 3mg or even less to manage the inflammation of PMR but replacement of the pred with hydrocortisone which theoretically is better for regaining adrenal function often doesn't control inflammation.
You’re going to make me dig aren’t you?😂 Okay, may take awhile as I don’t think I saved it to the computer because I don’t think I dreamed it up (and at my age anything is possible😁) but I’m 90 percent sure I read a document that discussed another compound (I thought a steroid) that could be used in addition to Pred to address only the adrenal deficiency and one had no impact on the other. Or I totally misinterpreted what I was reading. That too is a possibility, but now I’m curious.
Wait. I think we’re saying the same thing but differently. Prednisone is stronger than hydrocortisone. If you need let’s say 3mg Pred to control PMR, but it’s not enough to keep your cortisol sufficiently elevated. As if my memory serves me correctly hydrocortisone has little (no?) impact on adrenals but can raise cortisol levels. As you continue to lower Pred, if necessary can increase hydrocortisone (if that was what was mentioned in the paper) to offset adrenal deficiency. My understanding was the mechanism was such where Pred could inhibit the Adrenal medula hydrocortisone would not exasperate the situation. Let me try to find that paper. Maybe I’m not stating it properly.
It must depend on how much HC and what time the dose is taken - but if there is any corticosteroid present it will have SOME effect on the adrenals. But it is the amount present at about midnight that counts so if the HC is taken early enough, it is eliminated far more quickly than pred so the chances of the adrenal production being triggered are greater. we are probably saying the same but from slightly different viewpoints ...
I’ve been blessed. Assuming nothing changes I’ll be off Prednisone after 39 months of treatment, and that includes starting at 80mg!
I think it was around 2mg/day when a couple of times I felt a wave of nausea hit me out of the blue and I just rested for about 10 min and it dissipated. I attributed it to AD, but don’t know. I attribute my lack of AD issues to literally continuing to follow the 10 percent rule: 10>9>8>7>6>5.5>5>4.5>4>3.5>3.25>3>2.75>2.5>2.25>2>1.75>1.5>1.25>1>0.75>0.5>0.25>0
Most was DL 5wk, some, based on how I was feeling were 4 wk, one or two transitions were 6 wk and one at 3 wk by accident. With such minute decreases no significant flares and very minor or no adrenal issues. Tbh, while I’m at wk2 of 0.5 > 0.25 I ‘feel’ I could just quit at this point and be fine, but, why risk it as I have nothing to prove.
I’m really surprised my Rheumy didn’t once suggest replacing Pred with Actemra, or equivalent, even once like @Dad2Cue doctor, especially considering he kept pushing MTX.
I’m just hoping once I hit zero I’m done with it for good.
I have an Adrenal Reading which has come up from 101 when I was on 6mg to 150 having reduced from 6.5 to 5mg. I have been under an Endocrinologist who I saw recently & have been told to try & reduce very very slowly, just edging down, trying to cope with the side effects of very low adrenal function - for me I know no more than half a mg over 6 weeks (I started suffering the problem at 8mg) & have sat at 5 for 6 months now as didn’t feel good enough to start reducing again. The problem is if you increase your steroid you are back where you started.Much better to stay at 5mg & wait until your body readjusts - not easy I know.
This advice was underlined by the consultant.
The other advice was if I am ill (catch Covid) double my dose for 3 days to help my body cope.
Did she or your Rheumy tell you what dose of Pred to try if out of the blue it hit again? What biologic did the Endo put you on? Assuming my progress isn’t affected I’ll be off by 2nd week of September 3 yrs & 3 mos after my first 80mg dose.
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