After 12 years of PMR and down to 5mg of prednisolone I am told I no longer have PMR! However I have reverted to lots of pain and get extremely tired having to collapse at least once per day. A new enlightened GP is looking for a synacthen test and suggests my adrenals may have given up the ghost! This site says stick to very slow reductions of pred to get the adrenals working again but I am confused. I am back on 10 mg pred and virtually no pain. How then do I get adrenal glands working again? I seem to have several symptoms of Addison's disease and if I do have it am told I will have to have another steroid for ever after or maybe HRT. I am male! Any suggestions please? It is good having no pain on 10 mg and GP suggested this for at least 4 weeks.
Taper/Adrenal fatigue/Addison's disease - PMRGCAuk
Taper/Adrenal fatigue/Addison's disease
Hi Mike
Firstly, don’t worry about ‘HRT’ that’s the abbreviation for Hormone Replacement Therapy - it doesn’t mean the kind we gals sometimes take at the Menopause 😉
Your GP sounds as if they have a handle on this & great they’ve suggested to increase your Pred to see how you feel & glad you’re feeling better.
Your GP may suggest you drop by 0.5mg rather than 1mg at a time which will be less of a challenge to your body.
The real issues start at about 7.5mg(ish) which is when you start to notice more pain etc as that’s about the dose you need to make up the Cortisol Level everyone needs to function.
They may consider changing you from Pred to Hydrocortisone as that mimic’s the body’s production of cortisol however it is not as beneficial to pain.
With Hydrocortisone you have to take it 3times a day with a larger dose in a morning with two lower doses at lunchtime & tea time. It is essential that this is taken on time as it has a much shorter lasting effect. Your GP will probably send you to an Endocrinologist for their opinion.
My Mum was on High Dose Pred for many years for Asthma & had what was described as an ‘Addisonian Crash’ - caused by some bright spark of a district nurse who debrided a leg ulcer & Mum collapsed a couple of hours later. For some reason 🙏🏼 l decided to pop in to see her on my half day, so l found her, she was Blue Lighted to A&E - she then remained on Hydrocortisone 3times a day for the rest of her life. If she ever had a Chest Infection, to which she had always been prone she was given Prednisolone as a Short Course so as not to interfere with her Hydrocortisone Dose.
Kind Regards
MrsN
PS there has been a post about the Adrenal Glands in the last day or so, if you scroll down you’ll find it.
Um - how do they know you no longer have PMR if you are still on 5mg pred? Especially if 10mg deals with pains that are VERY PMR-ish?
Enlightened he may be - but there is not a lot of logic in seeking a synacthen test which is not very informative when the patient is at or above 5mg pred and at the same time increasing the dose to 10mg.
What symptoms of secondary Addisons do you have? And some choose to manage it with pred rather than hydrocortisone - especially when there is a question as to whether the PMR is still there.
Hi. To be fair it was not the GP who said I don't have PMR anymore. It was my Rheumy 18 months ago on the basis of my inflammation markers. I have not been diagnosed with Addison's - it's a possibility the GP wants to look at. Symptoms are fatigue, feeling unable to tackle physical jobs - like cutting the grass, dark blue patches on back of hands, prone to panic attacks. Constant battle with constipation and bouts of abdominal pain - but this could be diverticulitis which I do have. I do need to urinate frequently but this varies. Difficulty getting a good night's sleep - longest would be about 5 to 6 hours. I also have bronchiectasis which means I cannot exert myself too much - the electric bike is fantastic - 1300 miles since March! I was diagnosed as pre-diabetic and since then cut out sugars etc and have lost a stone. Full blood tests last week seem normal so I am now waiting for GP to get back.
Grrr - a pet hate of mine that! Just because a patient on pred has normal blood markers doesn't mean the underlying cause of the symptoms is inactive - it means the dose of pred is enough to mange the inflammation. Really not the same thing!
I take it he has investigated the obvious cause of the peeing?
Yes - a few years ago I had an enlarged prostate and was peeing about every 30 minutes at night. But now it is only once in night. No more tests done.
What an earth did your rheumy think pred does? It reduces the inflammation so your inflammation markers should be normal. That definitely does not mean that you automatically do not have PMR. Do they really believe that taking pred, which then reduces your markers, cures you of PMR? Words fail me!
Ah that old chestnut. On what basis can anyone tell you haven't got PMR if you are still taking steroids which probably is controlling it? I have been in the same position and naively believed doctors who said it must have gone way as I'd had it so long. You may still have PMR and you may have adrenal problems or you may actually have both, I did. The symptoms can be very similar and tbh difficult to unravel, but a synacthen tst can help. though you need to be on 5 or less Pred to have it, my endocrinologist said it had to be below 5. Increasing your dose would make you feel better whether the problem is PMR or adrenals so that doesn't really help the diagnosis. The only solution is to taper down the steroids, with the help of hydrocortisone to replace the missing Pred at low doses. The HC keeps our adrenals going but do little for inflammation, so if you still have PMR symptoms you probably still have PMR. But even when on HC you would need to allow at least 6 months to see if your adrenals kick back in. I have written long posts in the past about my adrenal problems if you do a search. All the best
There’s no point worrying about adrenals while you’re at 10mg; they simply don’t need to work at the moment. The only way of getting them to work is to stay at a low enough dose for the memo to get through to them. 8-5mg can be very tough because there isn’t quite enough Pred to go all day but still too much for some people for the adrenals to know it’s their watch now. I felt pretty vile until I got to 5mg but although I had general aches and pains I did not have PMR symptoms though sometimes I almost persuaded myself I did. The Synacthen test done at 4mg showed an ok response but not exciting. Gradually it came back but it was never consistent until I was on about 1mg, but that was me.
Docs seem to vary in their response too. Some assume all is lost even when a patient is still on too high a dose to tell. Some don’t think it is an issue or don’t think about it at all and some get it right. This means test at a suitable time, give the patient lots of info on adrenal insufficiency and crisis and if it’s appropriate, let them get on with a very slow reduction to challenge the adrenal axis into action.
BUT If your PMR isn’t settled and you need to go back to 10mg, the adrenal situation has to go onto the back burner. The difficulty with the below 10mg area is if you get crushing fatigue and general lassitude you don’t always know if it is autoimmune activity, adrenal insufficiency or both. I had GCA and my hunch for me at that time was to keep reducing even though daily life was like walking through custard. It paid off but it was months of feeling rough.
Dear SnazzyD,thank you for all the information.I taper using the DSNS method ,reducing a quarter of a mg each step.I am moving down from 4 to 3 and 3 quarter mgs.I know I still have PMR because every morning at about 4am ,the backs of my thigh feel fuzzy and heavy ,I also have lots of the usual symptoms,at times ,so I am not expecting to be able to stop taking the Pred for quite a while.I am just following the amazing and wise advice that is given out so kindly on here to reduce to the lowest level of Pred which settles the symptoms. I am not rushing at all.
Your post has made me wonder.I do feel that I’ve run out of Prednisone in my body quite often .I am hoping that my Adrenals will continue to cope with my reductions.Is it safe just to accept feeling completely drained by the afternoon/evening?I certainly don’t have the same amount of energy now.Will it cause any harm or stress to my body?How should ,or do I have to prepare/be prepared for an Adrenal crisis? Or doesn’t this happen with people who just have PMR?
Shall I just get on with it?What happens if the Adrenal glands don’t make up the shortfall of cortisone? I hope you can follow this rambling post.These questions have been bothering me for some time and your post prompted me to ask you. Sorry and thank you.
The adrenal status is nothing to do with the PMR - it relates to you having been on pred for a long time and the whole feedback system that pred disrupted and which has to get baack into balance again. That doesn't happen overnight - it can take months at too low a pred dose for perfect function for the body to wake up and smell the coffee.
Thank you PMRpro, I thought that’s what needed to happen but I’ve always wondered about the actual process.If the body doesn’t get given enough Cortisone in the form of Prednisone and the Adrenals aren’t fully working but are beginning to function,where does that leave the body? Does it have to run on less than it needs and is that alright or is it harmful? I understand that they need to be promoted but at what cost? And so in the meantime do we just have to manage with feeling a bit sluggish by the evening?Thank you.
Well yes - you do have to manage with an underpowered system until it wakes up and if the adrenal function is low enough to be a risk (as established by a synacthen test) then you may need to have a "rescue pack" on the shelf in case of an adrenal crisis.
stgeorges.nhs.uk/wp-content...
Thank you ,sorry I haven’t had a minute to see your replies before today.I’d better sort this out.You have explained this part of coping with PMR perfectly.Thank you.
Sounds like your PRed might be getting a bit low to control your PMR. Depending on your daily stress and activity it might require more for longer to keep the inflammation at bay.
As PMRPro says, adrenal problems are not to do with PMR. Sleepy adrenals is a consequence of them not having to work because of so much artificial steroid (Pred) sloshing about in the system. Once the Pred gets low enough they need to learn to work again and it is this process that needs to be slow too. Adrenal crisis is an acute event where there is not enough steroid (natural or artificial) in the system to cope with whatever your body has to deal with like shock, stress, illness, accident etc. It can also creep up slowly if background physical and mental challenges go on and on. Even a slow easy life can be too much if you can’t produce your own steroid. Anyway, what you do about it is when you start getting under 7mg you taper very slowly and keep an eye out of signs of your body not coping. Have a read of this
patient.info/doctor/adrenal...
So, don’t panic, just keep these symptoms in mind so that you can seek help if they spring up or start creeping on.
While you are on doses of above 7/8mg your adrenal glands will be back to sleep again. The adrenal function is an issue as and when you get go back down in dose.
Thank you SnazzyD, please see my reply to PMRpro.to explaining my further thoughts and questions.I am reducing so slowly by a quarter of a mg on the DSNS schedule.Currently on 4mgs and reducing .... I also repeat a week if I start feeling a flare stiffness ( normally of my left shoulder).If the Adrenals don’t start joining in where does that leave us?I appreciate yours and PMRpro’s time.
Firstly don’t panic and think the worst. Just take it very easy and try not to over do it or over stress yourself but above all listen to your body. If you start to feel increasingly ill and have symptoms in that article you get medical advice. A period of feeling rubbish is very common but your adrenals have to be challenged otherwise they don’t know it’s their turn now. If your adrenals don’t kick in and/or a Synacthen test (done under 5mg) shows a poor result they put you on a shorter acting corticosteroid to support your adrenal function. There is no short circuiting this process currently, as in no magic pill to boost the adrenals and besides they need to learn to work on their own.
Thank you.well my days are always busy,I’m a nurse and I am the type of person that ‘could be busy in an empty room’ even when not at work! I will try harder to pace. Emotionally I am in the process of trying to leave my home after a much needed divorce it’s taking years because the house has to be divided before I can sell my half.Neally there now I hope .It’s incredibly stressful having to live next door to an ex.So I guess my little dose of Prednisone has to cope with quite a lot.
Thanks for the article and your advice.Take care of yourself.
You'll have seen my reply above - I think you probably need a synacthen test to assess where you are. Under 5mg is the first hurdle, some endos like the patient to be at 3mg. You are under a lot of stress of various sorts - either you need to stop tapering for a while or you might need to add hydrocortisone for the adrenal boost. If the adrenal function is blunted then you don't get the spikes of cortisol to deal with stress events.
I see.Well I will ask for a test. I think my body is quite used to being this stressed as it’s been going on for decades. Although it’s going to be massively increased if the house ever does become ready to sell.I think that I’ve got a telephone appointment coming up with the Rheumatologist soon so I will discuss your advice with him. I’ve never seen an Endocrinologist.Thank you for your clear explanation and advice as always.Take care.
Mmmm - but the PMR and low pred haven't been in the equation for decades have they?
That’s true but I did have two frozen shoulders about two years before I got the PMR label which may have been the beginning I suppose.I have had PMR officially for four years now.I get your point of course.Certainly over the last year I have been making a great deal of effort to eat slower and relax my shoulders more. I often catch myself being completely tensed up for no reason at all and try hard to take a breath.
Many thanks.(See, midnight already ,I’ve been helping with my son’s homework )!
Thank you everyone for your comments. I am 72 and have to say all this really leaves me rather confused and fed up. It seems as if we cannot win against this PMR thing. Having gone back to 10 mgs Pred I do feel a lot better but still get the fatigue. I think I would rather be this way than worrying about what else is happening or what I should be doing.
Ooh yes I do know that being busy in an empty room! I think we nurses are particularly bad at being still. Have had to unlearn that since GCA. Also I do know the divorce thing and carving stuff up. So, you’ve got a plateful. I’d say you can’t have it both ways ie. working/stress and reducing right now. Be very careful of getting a flare which would be upsetting on top. Do try to look critically at your job list and see if anything can go so you get some rest. Bodies have a horrible habit of coping, coping, coping...and then not. So getting through a day isn’t permission to cane it the next. It is jolly upsetting and inconvenient to have to think like an ill person.
Thanks SnazzyD,we have a lot in common!I will try to heed your good advice.
Take care.
I had exactly the same ridiculous response from the rheumatologist I was seeing! That the inflammation markers were down ( no idea what they were!) so therefore PMR was no longer “ active “. This was also said last March when I saw a registrar who just read the notes the rheumatologist had written a year before, and said the same thing!
My lovely GP ( who sadly has now just retired) said it was ridiculous as the steroids were doing their job so the markers shouldn’t be raised. I really can’t be bothered to see anyone in rheumatology if that is all they can say!
Incidentally, my markers a couple of months ago were higher ( for me) than they have been before. So, have gradually been trying to reduce down from 10 mgs ( tried a couple of times in the last few months, to no avail) but have been on9 mgs for about 10 days. Fingers crossed!
Good luck!
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