I have posted recently that I was about to undergo a short synacthen test to discover if my adrenals were suppressed. Two weeks later I have had a phone conversation with my GP who tells me the Rheumatologist has referred me to an Endrochronologist & yes my adrenals are suppressed. The Rheumy suggests I continue on 15mg a day (in 2 doses) Hydrocortisone or return to Pred at 5mg (I had previously reduced to 2.5). I now suspect the Rheumy is correct in diagnosing that my PMR has gone & my symptoms are probably due to the adrenals and/or Psoriatic Arthritis.
I am hesitating over returning to Pred. Has anyone else had experience of managing this condition which, I understand might now be life long 😢. Thank you.
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Pollyanna16
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Hi pollyanna16, at least you know now. I don't have much experience of this. I think one member was put on Hydrocortisone but it didn't suit her so she went back into pred. I think it depends what suits you. I certainly wouldn't be scared of 5mg of pred though imagine it should be nearer 7mg. As I say I have no experience just wanted to say glad you know what's going on now 🌻
Hi Polyanna I have the same problem. I had tapered to 2.5 but now take 4or 5 mg and that will continue for life. My endo did say that hydrocortisone is usually used but she said as I tolerated pred well I could stay on that and I'm doing grand. Hope you get sorted
I was tested at 6 mgs and found to be deficient. I was told that there was a 95% chance of my Adrenals recovering. I don’t remember the exact figures, they seemed significant to me. I am on 5 mgs of Pred however the Endocrinologist would prefer that I was on Hydrocortisone, starting at 25 mgs moving quite rapidly down to 15 mgs. I am waiting to discuss next steps with my Rheumatologist in about 10 days. I prefer to stay with Pred. The side effects are negligible and I don’t think Hydrocortisone would do much for PMR pain and stiffness which I still get to an extent. Like you I have suspected Psoriatic Arthritis. I would be interested in how you get on. We could always PM.
Thank you Sheffield Jane that’s interesting, we seem to have a very similar situation going on. Yes we could PM. I shall see if I get a copy of the rheumy’s letter tomorrow & if I can glean anymore from it.
Thanks to Mark’s input I have now confirmed that my awful fatigue that seems to be worsening can be laid at Psoriatic Arthritis’s door, not PMR,Pred, or even Adrenal suppression necessarily. Two essential naps today and still tired with general malaise. This is not what I signed up for!! 😡
Nice to see you Mark, I wish the news was better. My Psoriasis is confined to my feet and hates sunny weather. They look quite normal in the winter!
Thanks J. Maybe my Rheumy picked up on the fact that I also had Palmoplantar psoriasis several years ago (nasty blisters on hands), but it cleared up on its own with no recurrence. I'm certain that it correlated with a stressful time. As with PMR, immune system over-reacting maybe?
So many ppl here seem to report the DF as a major symptom of PMR and / or Pred / Pred reduction - even when gentle. It has certainly been the main curse on my PMR journey, and still is despite other PMR symptoms (pain, stiffness) being almost non existent recently. I'm hoping a Synacthen test will throw some light on what's going on (or not) in the adrenal department. Hey ho...
Interesting also that there are differing opinions from medics about whether long term steroid (Pred) treatment does in fact supress adrenal function permanently. I can only guess that it will vary in an individual's health context?
That is because it isn't a 100% effect - everyone is different! Probably half of patients on PMR/GCA duration pred management are able to reduce and get off pred without problems at all. The other half or thereabouts have problems, with some requiring a longer and slower taper to allow a very gradual return to adequate function for day to day living. Of that half, some will have (almost) total and permanent malfunction whilst others will just be running in the slow lane. So since the facts vary - so must the opinions.
I don’t believe it’s connected to Steroids. I have had Psoriasis since I was 15 & it goes back 3 generations which is often the case. Another autoimmune disease effecting the skin. However there is an arthritic version! Which I may have.
The Psoriasis I have pre-dates PMR by some years. I used to have it in my ears, Pred. seems to have cleared that up completely. I had never heard of Psoriatic Arthritis until my Rheumatologist suggested that it could be responsible for the joint pain I was experiencing after 3+ years of Prednisalone treatment for PMR. I know of no studies that link this form of Arthritis with PMR. I am hoping that I don’t have it, it has been confined to my feet for so many years. It goes in the winter.
There is no link - it is a differential diagnosis. PsA can present looking like PMR and responds well to pred as well but they are different disorders.
My friend has psA and it does present like PMR. I THINK anyone with psoriasis can get it. When she lived in.portugal for a year she almost turned her head to the wall after a stay in hospital. I have dry skin on my elbows and these were examined at Rheumy to see if PsA a differential diagnosis.
Can they tell you definitively whether you have it or is it a process of deduction like PMR? My pains, such as they are, are not really clearly bilateral anymore.
Thanks Poopadoop! That has increased the sum of my total knowledge but I am still not sure that I have it and if I do it’s mild. It seems that like PMR it can do a lot of damage unchecked, so Methotrexate raises its head again.☹️
The problem is much the same as with all a/i disorders and as there is no cure it is a case of finding the drugs that work best for you to give the best management of symptoms and quality of life. Everyone is different - boring but true.
Deduction I'm afraid. I think her right hand side was really painful last time. I think she may be starting to flare again. Her right hand very sore and was swollen a couple of weeks ago. It's gone down but she is not feeling very good, off food and fatigued.
Some people seem.to tolerate mxt but others hate it. Maybe it's suck it and see.🌻
My hair’s just grown back after PMR/Pred loss. Worried about the lung/kidney/ liver effects and everything had depression as a bonus. Never mind, I can hear lovely owls outside, spookily cheering.😞🦉
Yes all meds a mixed bag of rubbish. I take stuff that has unwanted effects that include skin and thyroid cancer. My liver etc checked every 3mths because of my dmard. So far, apart from initial side effects until dmard got up to max dose, it seems fine but its not mxt. I suppose the thing is once one is being treated with the correct drug, does it make a difference to the quality of life. Only you can answer that one.
The psoriasis on my skin pretty much cleared until I got down to about 3/4mg of pred, which was great. I thought I had “grown out of it”. However it comes & goes regularly now maybe as I go back to 5mg it will disappear again. Fingers X.
The more I learn about PA the more I hope we don’t have it. It seems to cause a lot of co-morbidities and deformed joints. Do you have stomach trouble? That apparently goes along with it - like Crohns Disease etc. Much more complex than I imagined and Methotrexate can stop it progressing further.
I am in a similar situation to yours, and have an appt with my Rheumatologist next week to discuss persisting symptoms of 'DF' ('Deathly Fatigue' - by which I mean frequent and truly incapacitating mental and physical Exhaustion) for the past 12 months despite PMR pain / stiffness symptoms being generally under control and at 3 mgpd Pred +/- in context, and depending on how I feel.
From my learning here, my request will be: "Please refer me for a Short Synacthen / ACTH Test to establish clinically and objectively whether my Adrenal function has been permanently affected by long term steroid (Pred) usage: as has been suggested might be the case according to some recent studies into the subject.
Co-incidentally: at my last appt with my Rheumy 12 months ago, when I asked him about the dread DF (by far, the worst of my PMR / Pred related symptoms) he replied rather casually : (q) "You have (arthritic?) Psoriasis!": as if to suggest 'what do you expect?!'. At the time, and due to the DF, I was feeling like a medically proverbial rabbit in the headlights, so didn't have the presence of mind to question his statement, nor the context for his differentiating between PMR and Arthritic Psoriasis.
As you suggest: it's a difficult decision to make for a PMR patient re.possibly arbitrarily adjusting the Pred dosage +/- without some reliable, clinical perspective on what is most appropriate in context. (Of course, the advice / treatment regimen for GCA patient is a very different matter).
Either way, I look forward to comparing notes with you on this one.
Best wishes, and try to keep smiling on the often unpredictable and perplexing PMR / Pred Journey. We live in Hope for better times health wise...
Thank you so much Mark. I am so sorry you are having such awful DF when you had done so well reducing. Do you have Psoriasis? How strange he just threw it out there. My Rheumy has been trying to get me on methotrexate to treat the Psoriatic Arthritis but was waiting to see my results to help her with the diagnosis. I don’t think she has mentioned it in the letter though. Not quite sure what to do about that at the moment 🤪. Anyway ... I very much appreciate your comments & will be interested in the results of your next appointment! I was try & stay positive but it’s all rather depressing 😒
No worry Polly, it's always good to compare notes with others of Us Lot in a similar position
Yep, the whole PMR (not forgetting GCA - potentially far more serious) thing is quite challenging at many levels.
Yep, my (albeit well respected Rheumy) threw me a curved ball with his 'Psoriatic.. etc' comment. But being known as a bit of devil for the detail I'll quiz him on it when I see him.
Yep, I know: these things are often a bit depressing but keep your chin up and we'll get through it. To be continued...
I do feel now that my symptoms have been adrenal related for a while but how are we supposed to differentiate? I really think there should be an adrenal test at around 5 mg, hey ho I hope you are able to reduce from 50mg shortly. Thanks for your helpful input.
I tested at 5mg and the adrenals were suppressed. 10 months later I was still on 5mg, but the adrenals had recovered. I think it depends on how much and how long you have been on steroids. My GP said that with suppressed adrenals 5mg would be what the body would need and not to be too worried about being on steroids. Now the adrenals are up and running I can taper. I have tried to go down to 4.5 but had a horrible flare up. A bit scared to try again.
The second one was to see if the adrenals were ready to taper my steroids. I really didn't feel any different health wise - although in the actual tests I felt no reaction in the first, and I tiny surge of something in the second.
Yes the dreaded adrenals. I spend most of my time trying to humour them. Doesn't work. I still feel horrendous. I've not had a test. I feel so bad I would like a proper check up but I am afraid they will try to put me on metheroxate or something as my GP is insisting I get off the steroids (been on them three years) but I just can't function and I reduce any more. I'm on 4.5. Let us know how you get on and good luck with it all.
I was stuck on 6mg pred for 6 months so rheumy put me on methotextrate. I haven't had any side effects and am now down to 3.5mg pred tapering 1/2 mg month since January. I started in July 2017. My rheumy made a comment that I wouldn't be able to reduce if my adrenals weren't working.
You have to have either pred or hydrocortisone as a replacement therapy if your adrenal glands are not producing cortisol. It's like being on thyroxine because your thyroid function went AWOL.
One lady felt fine at 2mg - but has no adrenal function at all. Hydrocortisone is usually used as a replacement that better mimics cortisol production - the side effects for her were bad so she went back to pred which causes her no problems. It is a case of what suits you best really.
And with a VERY slow reduction it might come back - never say never!!
Thank you PMRpro. My friend, a retired GP, used exactly the same analogy yesterday which is very useful. Have taken 5mg of pred this morning instead of the HC & we shall see how it goes. I was ok ish on HC though feeling sluggish on 15mg, we will see if there is a difference. I am feeling very large around the middle & probably because I have been less active recently haven’t shifted it 😬 I may just see a nutritionist to make sure I am taking the right combination of supplements & see if she can help me drop the weight too. Onwards & upwards.
Cut the carbs - it really does work for weight control when on pred and when I started the first place the weight went from was around my midriff as evidenced by my trousers suddenly deciding they could keep up!! There are no supplements that have been shown (scientifically at least) to improve adrenal function. It is a very complex process involving a lot of factors, both organs and hormones, which have to work together.
Yes I’m sure cutting carbs will help. I just mentioned to my Pilates teacher/physio that I was thinking of seeing a nutritionist & she was very clear that I should opt for a dietician instead. Mainly due to their having to study the subject to degree level & don’t try & sell you supplements. 😉
I agree with her 100% - nutritionist should be accompanied with a sign saying "Do not go here!" Use the money to improve your diet. Mind you - I have had a hospital dietician tell me to eat more carbs to lose weight!!!!
From the comments and stories in this thread, I’m wondering if there’s a connection between those who suffer the Deathly Fatigue and have trouble tapering due to adrenal insufficiency.
I had no fatigue pre-pred, during pred and post pred, and have tapered to zero more or less uneventfully. A few niggles since, but settling down in a new normal that’s quite livable.
But I wonder if those who have had trouble getting tapered below that functional level, and have tested as positive for adrenal insufficiency, are more likely to have experienced this incapacitating fatigue I keep hearing about.
Is there a link? Could presence of debilitating fatigue during PMR be a marker for a need to test adrenal function and taper very slowly?
It is not a given that pred will damage adrenal function, it doesn't for a majority of patients - and for many there would have been adrenal insufficiency anyway, probably never recognised because the fatigue was put down to aging.
Have you a better suggestion for managing PMR than the ONLY drug that works affordably? Actemra works for some - but it also has some pretty nasty potential side effects. Of course there needs to be other options - unfortunately that applies to many other illnesses and it isn't as simple as you might think.
Polyanna I used the dsns method to taper and had no DF until I reached 2.5 ml of pred. That was about 4 years into my PmR journey. That's when I had the synacthen test that showed adrenal insuffiency
It's important to keep in mind that while pred can have some serious side effects, including permanent effects on adrenal function, the damage from untreated inflammation - besides the pain - is irreversible.
One can get along quite well on a low dose of pred for the rest of their lives. Not so much when untreated inflammation has damaged heart, lungs, liver, kidneys etal.
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