Anyone diagnosed as not producing Cortisol naturally, hence problems at reducing prednisolone to zero?

[CZAE]

Diagnosed in 2019.

When reducing Prednisolone below 10mg symptoms always started to return. Was put onto Methotrexate injection (but this did not make any difference to my symptoms).

Eventually I reduced my prednisolone to zero in March 2024 and ceased Methotrexate in July 2024, however my (PMR) symptoms had been steadily getting worse from September 2023.

My Consultant insisted that I had Steroid Myopathy and not PMR. The symptoms got worse and worse by October 2024 I could hardly move (swollen hands, weakness of muscles etc). My GP was sure it was PMR.

Another Consultant sent me for a PET scan which proved conclusively that I had bad PMR. So back onto the steroids and now feeling a new person.

New Consultant thinks that I am probably not producing natural steroids (cortisone), which may be why I have experienced the difficulty in reducing prednisolone.

I have been referred to Endocrinology for a Short Synacthen Test (SST), however to have this test I must be off steroids (best) or 3mg/below (next best). I am now on reducing dose to enable this test to take place.

I would be really interested to talk to anyone who may have gone down the Synacthen Test route and hear their experience. Also to share my journey with anyone who would like to talk to me.

[DorsetLady PMRGCAuk volunteer]

Hi, you will get more replies when Europe wakes up later.. but can I ask what dose are you on now? And if above 7-8mg and have been on steroids for longer than 3 weeks or so you own body won’t be producing any cortisol anyway … your adrenals glands temporarily go to sleep until you get low enough for them to be nudged into waking up again.

Have a look this - healthunlocked.com/pmrgcauk...

As you say an Endo won’t be interested until you get to around 3mg - but by reducing the dose, your PMR is likely to flare….

[CZAE in reply to DorsetLady]

Dear DorsetLady

Thank you for your reply. I am currently on 10mg having reduced from 15mg prescribed in early November. I am prepared for my PMR to flare as I feel it is vital for me to allow this to happen in order to know about my adrenals (and possibly my pituitary function).

Your link to Cortisol testing is really useful.

When I wound down my prednisolone over 2022-2024 once I reached 10mg I then went down at .5mg at a time over 20 months. But my PMR started to return when I got down to 7mg and steadily got worse over the following months. I found it really interesting that a PET scan offers a conclusive diagnosis and did not know about this as a diagnostic test for PMR. Have you heard of this? You have to be off prednisolone to have a PET scan for a PMR diagnosis.

[PMRpro Ambassador in reply to CZAE]

"I am prepared for my PMR to flare as I feel it is vital for me to allow this to happen in order to know about my adrenals"

Which is all very well, but if you are on more than 7mg pred it will be suppressing cortisol production anyway, it is a perfectly natural physiological response to the present of exogenous corticosteroid. It can take months at lower doses for that to recover, and if you have let PMR flare badly you do run the risk of it being much more difficult to get under control and lengthening your need for pred considerably. Which really seems rather counter-intuitive.

[DorsetLady PMRGCAuk volunteer in reply to CZAE]

PMRpro has replied [I’m in different time zone at present] - nothing to add to her replies…and agree with her comments.

[PMRnewbie2017]

Have i understood you correctly? You stopped Pred in March 2024 and were not on it again until 2025? Surely if you were able to function during that time (ignore PMR symptoms) this would mean you were producing some cortisol? Symptoms of secondary adrenal insufficiency are a medical emergency and can be life threatening. I've been there and it's not something you can overlook! So, given that you do have PMR, Pred is the treatment. You may qualify for a biological but you still need to taper off Pred.What dose are you taking now?

Your situation is complicated and perhaps you are steroid dependant. An endocrinologist will use Hydrocortisone as a substitute for cortisol, but HC is not potent enough to treat PMR.

As has been said, a SST or even a basal cortisol test is not going to yield anything useful while you're on a dose of greater than 3mg. You may also have a long wait to get an endocrinologist appointment?

[CZAE in reply to PMRnewbie2017]

Thank you for your reply. I stopped Prednisolone in March 2024 and was put back on in November 2024. I was really unwell during this time, forcing myself to take exercise, but if I stopped moving I would seize up badly. I took large amount of pain relief daily. Currently on 10mg.

I aim to endure any return of PMR symptoms in order to have the SST. Endocrinology have kindly said they will fit me in as soon as I am on a low enough dose, and I can immediately return to a higher dose of prednisolone as soon as the test is completed.

[Gaz227]

I was down to 4.5mg when I had my adrenal function tests , I also take 12.5mg MTX injection once a week, I could not get any lower than 4.5mg of pred tried for about 2 years to even drop 0.25 mg and every time I got very ill within 4 days , it seems 4.5mg is my bodies optimum dose any less and all hell breaks lose , then I have a 2 or 3 weeks trying to get control again . Endocrinology. Said it is fine to have the test at 4.5mg but can not have any steroids 24 hours before the test , the outcome was very poor adrenal function induced by 10 years of pred, I was told under no circumstances should I reduce , they tried me on hydrocortisone 3x daily , after 2 weeks I felt dreadful that was my last hope of getting off pred, I had real concerns about staying on pred for life but the endocrinologist said, just like a diabetic on insulin with low adrenal function you need pred to function normally , as it’s only topping up what I can’t produce he said hopefully you won’t have any side effects . 🤞up to now he is correct , I try lots of other methods to try and improve my health , lots of exercise , Intermittent fasting is my latest attempt 16/8 method I’ve found good as it keeps body fat levels low and you can eat most things, plus it maintains my blood sugars and blood pressure at a nice level . I do plan to try and reduce again the endo said I can try but at a slower than slow pace , who knows I might be able to get my body back in balance . Always up for sharing ideas and experiences , good luck 👍,

Ps with regards to mobility Yoga gave me my life back . 🙏

[CZAE in reply to Gaz227]

Thank you for your really helpful message - which clearly explains a pathway I may have to go down. I have a low weight and BMR, the prednisolone does not give me any side effects - it allows me to live! I take loads of exercise - walking, pilates (in various forms) 3 x a week, gardening etc. So if a low dose of prednisolone keeps me fully functioning I am fine with that!

[Gaz227 in reply to CZAE]

Best of luck 👍🤞

[Cashewnutty1962 in reply to Gaz227]

Hi. I’m new to this group. I have been on Prednisolone for 2 years now. Starting dose was 15mgs with great results. I have been trying to get below 4.5mgs since. Last attempt in October resulted in a bad flare up of symptoms. I decided to retire last month after 44 years in the NHS, latterly as a Nurse Practitioner. The flare up made work difficult. I feel better mentally but still aching on this dose. I am now trying to split the dose and will take 2.5 mgs enteric coated tab tonight. I took 2mgs of the uncoated tabs this morning. I will see how I go.

[PMRpro Ambassador in reply to Cashewnutty1962]

Hi and welcome! I hope we can help you enjoy your retirement with your PMR better managed!

If you would like to hear from more people than probably Gaz, the author of the thread and DorsetLady and me, do post this again as a new thread rather than a reply in the middle of an existing thread. The way the forum works means most people won't see it, just those who are actively following the thread.

If you post as a new thread, you will get lots of info from others about the later stages of tapering but I will say just one thing here: you are not reducing relentlessly to zero pred, you are titrating the dose to find the lowest effective dose, the lowest dose that manages your symptoms as well as that starting dose did. PMR doesn't just last 2 years and disappear like magic - 2 years is about the minimum and something like 3 to 5 years is a much more usual duration. You have done well to get to 5mg - and that sounds like what you need for now. There is no point being uncomfortable when a little bit more pred improves your QOL!

Looking forward to hearing more from you.

[Gaz227 in reply to Cashewnutty1962]

Hi and welcome , this is a very common problem you are having so try not to be to frustrated , easier said than done I know . Push your Rhuemy or GP for adrenal function tests after only couple of years that might be a hard task , if you have only been on pred for 2 years , with time and patience I think you have a better than average chance of getting off steroids , but remember the tortoise won the race not the hare. Very slow taper is the sensible option. Good luck 👍

[CZAE in reply to Gaz227]

Thanks for your message. I have been on steroids since 2019. However always had problems when getting to lower doses. Not being sure if the problems are being caused by PMR or lack of natural cortisol to make up for the low dose pred.

Fortunately Endocrinology are happy to fit me in if I get to a very low dose of pred. I am seeing my new consultant in February and will explore PMR resolution vs lack of cortisol replacement, what happens if Adrenals do not kick back in. I feel I need to understand how this works!

I have always tried a v.slow taper - .5mg at a time.... still get problems. Last consultant said my problems were due to Steroid Myopathy - but this proved to be an incorrect diagnosis.. and caused my much suffering until PMR was conclusively diagnosed using a PET scan

[PMRpro Ambassador in reply to CZAE]

"I feel I need to understand how this works!"

There is a good explanation of adrenal function when on pred in the FAQs, probably under A.

What is it you don't get?

[Gaz227 in reply to CZAE]

I reduced my taper to 0.25 by cutting a 2.5mg in half , still didn’t work for me . The endocrinologist told me after 10 yrs the chances of getting off pred are low but not impossible , my worry was what damage can I do to my body by being in such horrendous pain day in day out even with such a tiny reduction . The jury is still out as to whether I will succeed, but I will never give up trying from time to time, please keep in touch with your progress. I’m very interested to know the outcome. Like PMR pro said use a new thread and others in similar situations will pick up on it and just maybe they might have a different approach for us to try 👍🤞

[SnazzyD]

To answer your title question, loads of us at some point.

Your adrenal glands will be naturally suppressed depending on your Pred dose because they simply don’t need to work because the Pred is flooding the body with a synthetic form. Even on 5mg it can be enough to suppress the adrenal gland function. This is common but troublesome. We tend to start to feel the lack of cortisol from about 8mg down but it isn’t until you get below 5mg that the activity starts for many. All your PMR problems being tricky will be nothing to do with this.

The only way for your adrenal axis to come back on line is for your body to be subjected to a deficit which is done in a gentle and progressively more challenging way; reducing extremely slowly if the person is showing symptoms of insufficiency. From 5mg I was reducing 0.5mg every 8-14 weeks because my adrenal glands were very slow to pick up as the Pred was withdrawn. People usually start to feel the insufficiency from about 8mg. My Endo would not do Synacthen tests above 4mg as they can be meaningless for predicting future gland ability. Mine at 4mg was rubbish but they said to keep reducing and sure enough by 1.5mg they were much better on the second test. It was a rough ride I can tell you. You can’t force it or you feel very ill, so it can take many months or even a couple of years in my case. I am now ok.

While your PMR is active you need what you need and that comes first not trying to reduce just so that you can get your adrenal axis going. What dose are you on?

[CZAE in reply to SnazzyD]

Thank you for your reply. I have had some great replies which has been very helpful. I am on 10mg.

I could have had the SST in November last year when I had my PET scan. However the Rheumatology department (mine clearly does not communicate with Endocrinology) said it wouldn't be a problem going back onto Pred and that I could have the SST anyway...wrong!!

[SnazzyD in reply to CZAE]

Extremely wrong. 10mg will have done a proper Sleeping Beauty job on your adrenal axis so your SST would result would likely be dismal.

[PMRpro Ambassador]

I don't think your adrenal function had anything to do with the difficulty in getting off pred - you have confirmation from the PET scan that you still have PMR. If you have PMR, you need pred to manage the inflammation. The role of natural cortisol is immaterial until the PMR is burned out.

A synacthen test is not going to provide ANY information until you are well below 5mg and for some time - it can take quite a while for production of cortisol to start up again, it isn't like a toggle lightswitch, either on or off, it is more like an elderly dimmer switch that sticks and protests at being asked to turn up the light.

You also don't need the whole shebang of the SST - just measuring the basal cortisol level tells you a lot and whether it is worth doing the SST. But none of it is any point until you get down to well under 5mg - and the primary limitation at present is not adrenal function but the PMR itself.

[Mrsd12f in reply to PMRpro]

I do love your analogies, Pro!😀

[PMRpro Ambassador in reply to Mrsd12f]

😘

[CZAE in reply to PMRpro]

Thank you so much - your reply is really helpful and clearly I need to have a good chat with my new consultant. As the lines between PMR and body producing Cortisol have not been discussed with my previous consultant (2019-end 2024) I was just told that my severe aches, joint swelling and pains was caused by Steroid Myopathy. No mention of cortisol, until an on-call rheumatologist mentioned it and referred my for a PET scan.

[PMRpro Ambassador in reply to CZAE]

Steroid MYOpathy is muscles - shouldn't cause swollen joints.

The posts I have read in the last 10 mins make me dreadfully worried about the level of understanding some rheumies have of adrenal function at all and particularly in patients on pred!!!!

[SnazzyD in reply to CZAE]

I had steroid myopathy and it didn’t give me those symptoms! Muscles, what was left of them, started to hurt with not much working but not severe aches and joint swelling.

[PMRpro Ambassador in reply to CZAE]

Like Snazzy - I have had steroid myopathy - it did NOT cause those symptoms.