I thought this was a link that should be easily available - it's a bit heavier reading than some but from real experts in the field and deals with tapering steroids in various situations. They emphasise some of the things we have worked out as patients too.
As we all know, slow works best in PMR - but when you get to the stage that the PMR/GCA has gone away or you have been told it isn't PMR, something other than pred may be better, there is still some need to go slow for the benefit of your adrenal glands! I think this may be useful.
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PMRpro
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Good clear info. After being on 2mg of pred. For three years I had to go up to 3mg last year due to stress. Now when I try to reduce by only a quarter I feel not well. Quess I'll just have to wait a while. Patience, patience....
I just so wanted to reduce while everything is a bit easier so I could go up if need be.
Click on the link download the guide which is level with the top of the archives on the right, just above the heading Glucocorticoid tapering and adrenal suppression testing guide. It downloads as a print-friendly pdf file
I read through the article. My rheumatologist said at my last visit that he thinks he will keep me at 1.5 mg. (last spring I went to 1.0 and then .5 in the summer. It didn't go too well). I was ok with resting for a bit here. I'm feeling better, have managed to lose some weight, and increased exercise. I don't think/wonder if the PMR is in full remission because the holidays were quite stressful and my body reacted as you'd expect. I was able to keep it under control with rest and finally adding 2 days of an additional .5 mg. I go back to the doctor in March. I was thinking I'd talk to him about tapering again. Would it be a good idea to discuss having an ACTH test first? If I'm this low is the assumption my adrenals are functioning fine and it's the disease? I'm not sure what to think.
Thank you. I'll make a note to have the conversation with the Dr then. At least I would know for sure and it would give me/us some direction. It's hard - on the one hand I'd like to be in remission and off prednisone, on the other maybe I should be satisfied with 1.5 mg and feeling pretty good. For now I'm trying to focus on general health and rebuilding muscles.
Remember all it does is show if they CAN produce cortisol - it doesn't mean they ARE going to do so OK. It is a very complex feedback system with lots of bits to go wrong.
Horses for courses - the most accurate result is when you are off pred. The safer alternative is to have a look on the way down. But it very much depends on the individual doctor.
Thank you for this interesting article. I can't get below 4 or 5mg without having to increase the pred. My Rheumatologist is wondering whether this could be due to my adrenal function. Quote from her recent clinic letter ".....there may be some suppression of her adrenal glands meaning that she is not making enough of her own steroids." She's going to consider a 9am cortisol blood test when she sees me in 6 months' time.
On the other hand - what happens? Is it a return of symptoms? There are 2 things to balance - suppressing the inflammation of the PMR/GCA and being low enough to stimulate adrenal function to return. If you can manage at 5mg and not have to increase, that should be low enough to stimulate the adrenals.
ACTH stimulation test or synacthen test. Not really - you could assume that if you feel OK as you reduce the dose well below 5mg. But Karools (I think) felt OK at 2mg pred but when she had a test they found she had no adrenal function at all. That is something the article does mention - that there is an increase in secondary adrenal insufficiency.
Thank you for posting this and for managing my condition more than anyone else. I haven’t seen Sarah for over a year, she has been busy on other projects, and my GP is pretty useless. The Endocrinologist who has finally been consulted due to my Synacthen Test results has sent me a leaflet and a syringe in the post with ampules of Cortisol. Honestly, you have to laugh or you’d cry. Hopefully my sudden rash of appointments this month will clarify things. What’s the betting that Endocrinologist advice will contradict Rheumatologist advice? Hopefully my good Rheumatologist will be back.
Thanks PMRpro. Still hard for me to comprehend that I had none of the low cortisol symptoms, and landed up with Addison's. Controlled on 7mg Pred, at present, and sticking there until after my throat scope next month. Only able to taper to 5mg and that's my dosage for life. Fine by me.
Thanks again. I will bear this in mind. I can just imagine how good this would be. Even though it is at the other side of town and my current practice is within walking distance, with a pharmacy attached. My appointments have yielded nothing useful of late. I will see how I feel after the Endo and my Rheumie’s input. Thanks to you I know more about PMR than my GP he tends to look startled when I contradict him with a piece of your research.
In case you've forgotten, Helen is the one who did the research paper "I suddenly felt I'd aged..." It is strange that Sheffield isn't better!
My daughter was at Sheffield Hallam last Friday for her orientation day for her MSc course as an advanced care practitioner - no longer a paramedic. She has to commute once a fortnight for day release. 3 of them had a pool car on Friday - don't know if that will happen every time.
I just meant “ your research” in the widest sense. The research you find and share with us.
Sheffield Hallam is a great Uni one of my daughters went there.
I think my GP practice has lost its way somehow, it used to be great. It seems to accommodate a lot of students doing their GP year. You get a sense that they are rushed. Of course I’ve got one of those dread diseases that older women tend to get, that can appear difficult to manage with the balancing of tapering steroids, keeping symptoms at bay, the medical fear of expensive side effects, the development alongside of other diseases of older people that can muddy the waters. Symptoms that can appear vague etc etc.
Let’s face it, it is not fascinating to the uninitiated. Perhaps I have helped to burn out what used to be the best doctor there. No NHS doctor has time to go into the level of detail we go into here. I still think that the GP writing to an Endo and me getting a syringe in the post was pretty poor. I am not sure where I hid it, having children in the house at the time. My poor Synacthen Test results were way back in September.
Thank you so much for this PMRpro. I wish I had thought/ realised/ known about this before having my hip operation in November. I was on 5 mgs and had been attempting to get down to 4.5, but thought I should stay put at 5 when I got an unexpected call to have the op way before I thought I would.
Took me along time after my op to realise I was having a massive flare. So have now got back up to 10 mgs. Unfortunately my GP was not around to ask him about it all but am seeing him next week. Have been feeling worse over these last couple of months than I have for a long time.
It is all very well telling hip op patients they must reduce the pred so far - but they just don't think about the patient having a flare and then struggling to mobilise post-op. And to go so low isn't necessary - as a few people on the forums know,
I had a flare after my hip op, apparently it is quite common. In fact I was not allowed out of hospital as my CRP reached 415 and I had to wait for it to reduce. I was bored silly waiting and it was only a couple of days. I do sympathise with the surgeons though, it is easy for us to say they can easily operate at higher levels of pred, but I know some surgeons have had problems with people on a high level of steroids who have had problems after due to slow healing and infection, which is something you definitely don’t want with a hip op, as it may result in having to have a hip revision. This happened to my mother, she was without a hip for at least three months being given broad spectrum antibiotics until it healed and she was able to have a revision hip. Surgeons really do not want that to happen.
My hip op went petty well and I gave up crutches as soon as I got home, also I only took paracetamol for a few days, I am not sure I needed them though. One problem I had was a huge blister about eight inches long caused by some pressure on my lower leg while in hospital, no one knew why although I do suspect my surgeon suspected something! I reckon the reason it happened was that pressure caused it and there was a reaction because of the steroids. In fact my doctor and rheumie thought the same.
It seems if I get a bad bruise it becomes a blister. I had to have an op three weeks after my hip op as it became infected. It looked rather like shark bite. The doctors thought it was one of those flesh eating diseases. I just could not believe it was my leg when I looked down at it. I was having the district nurse coming in three times a week.
Maybe the surgeon had been leaning on this leg while doing the surgery on your other one. That sounds ghastly having to go in again to have more surgery after your hip op. I should think this was very worrying on top of having to recuperate and get mobile again as well as dealing with PMR..
I do hope it has all settled down now. I guess now you know what to alert any medics to if you have to have anything else done.
BTW, I guess, unless you are across the pond or on another time zone, you are like me and still awake! As soon as I get into bed my feet and legs get mad hot, no matter how tired I am. It does make trying to concentrate on anything, extremely difficult with brain fog as well, and just being exhausted.
It was actually the same leg as my op, but they do have boards to get you in the right position. I did have bruises on both shins after the op. Also after the op I had those anti DVT things they put round your legs which sort of massage them, they should be really pleasant, but it was actually quite painful, so it could have been that. I have had a couple since, but much smaller. I think the steroids are at the bottom of it though. I seem to spend my life at the local medical centre!
To be fair the lovely hip surgeon didn’t have an issue with me being on steroids, and in fact The anaesthetist gave me a shot of steroid when knocking me out. I just had no conversation with any medic about what might happen afterwards. I was concentrating too much on the actual op. Also had a physio who had me in tears afterwards who seemed to take no notice at all about me having PMR and Fibro .
I had managed to get to 5 mgs without any thought about having my hip operated on. My rheumy has been wanting me to get down off the steroids for a while. My GP has been quite happy with me managing my doses depending on how I am.
I just wish some medic had been in a position to talk to me about the after effects of the op regarding steroids. I stupidly didn’t think about it, and brain fog didn’t help.
I don't think it occurs to them - had you mentioned it here there would have been a chorus of "Be careful!!!" I do know people who were able to get off pred once their hip op was out of the way - as if the hip pain was feeding the PMR.
Hmmm, that’s interesting. I must say I am now very reluctant to have any more surgery. I have two shoulders that have problems with rotator cuff and tears in the tendons, which the pain coming from this was made so much worse having to use ghastly crutches after the hip op. I soon switched to Nordic walking poles which has been a help.
My husband is keen for me to get these seen to by the end of the year. At the moment I feel I don’t want to go through anything like the after effects I have been having, again!
I now seem to have shoulder, neck and back of head pain waking me at about 5.00’ish am so am wondering whether I need to split my dose to take some when I go to bed. Shall ask my GP next week!
Thank you PMRpro, have you had to do this? I see you have had to, yet again, go back up to 15 mgs. I am wondering whether I should increase yet again. Last night I had the shoulder, neck and head pain all through the night, so yet again another rubbish night, with having to get up because of soles of feet and legs on fire. I just seem to be worse than I have been for quite a while, and think it may well be as a result of a reaction to the hip op and me being too stupid to realise it caused a massive flare, and now have too much inflammation coursing round my body.
Splitting you mean? No, never needed it, a dose of pred lasts me over 24 hours, at least I have that positive!
Pillows? Not really. I have a couple of the neck support things which have been of variable success at various times. At present I use very squooshy ones I can pummels to provide support and comfort.
I am a bit concerned though about your worsening symptoms, especially the head pain. Have you a sensible GP?
Yes, wondered if you had tried splitting the dose to take some in the morning then the rest later. But sounds like you haven’t had to. Must say up till now I haven’t even thought about it. But since being conscious of these pains being with me at around 5.00’ish am I have started to wonder about it.
Agree, I have more pain and dreadful fatigue than I have had in a long time. All so annoying as I had comfortably got down to 5mgs and trying alternating it with 4.1/2 in October, then had the hip op in November. All seems to have gone to pot since then, but really my own stupid fault, not realising what was happening, so I rather think the inflammation has gone on the rampage!
I wasn’t able to see my GP as, poor man, had to look after his sick father who then died. He is very supportive of what I do. He is suggesting getting a second opinion regarding my shoulders. Also have a very thorough rheumy who I last saw in September, who seemed to think my PMR “ was no longer active”! But that there may be an overlap with Fibromyalgia. I really don’t know! I just know I hurt a lot all over and am wiped out!
Seeing my GP next Monday so will see what he thinks. My husband always says that I play down how I am feeling, so need to fess up this time!
Any pain that goes away with pred is NOT fibro - it isn't an inflammatory disorder. There is no reason why you can't try just a few days of more pred - if it works you have an answer, if it doesn't you can go back where you were immediately.
Thank you so much for this. You are such a longtime expert on all this. It is awful to think that I have more trust in what you say, ( I don’t mean that is is awful to trust what you say at all, just that I trust what you say more than the medics )
because you know exactly what you are talking about. Yes, maybe go up to 15 again, like you have done and see how that goes.
Thank you so much for taking the time and trouble to respond.
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