I’ve been on pred for 9 years now , at 4.5mg I felt there was no way I could reduce anymore , even 0.25 of a mg I couldn’t function , I told the Rheumy and my GP there was more to this than just reduction pain , finally yesterday I got the tests at the hospital to check my adrenal function . They have already rang me to say my adrenal function is very very poor and they are arranging for me to see an endocrinologist as soon on as possible , I haven’t got the figures yet from the test but I’m thinking it’s probably below a hundred considering the speed they got in touch with me but that might just be me being pessimistic. Has anyone else had very poor adrenal function from being on pred for so long , what can I expect to happen next , more drugs ? . I am also on 12.5mg of MTX , I hate taking any medication but for quality of life not much choice I guess . Thanks in advance for any reply’s 👍🙏
adrenal function poor after tests : I’ve been on... - PMRGCAuk
adrenal function poor after tests
There are a few members whose adrenal function never recovered completely.
Would say at 4.5mg, there is still hope that yours will recover -but good idea to see an Endo.
The medication for adrenal insufficiency is steroids -but usually give as hydrocortisone rather than the Pred you take now, and 3 times a day I believe.
Sure your Endo will go through all the options open to you.
Others will be along with more info.
Thanks for the info 👍
Poor adrenal function is very common once you get to low doses after being on long term steroids. See what the synacthen tests reveal which is basically whether your adrenal glands are capable of reacting or whether they are totally dormant. Your choice now will basically be either to do nothing and hope the adrenals start to work again, and in the meantime feel very rough. Or be switched to Hydrocortisone which produces the chemicals your adrenal glands aren't producing. Or going back up to a dose of Pred above where this happened, usually around the 5mg mark. These will all be options to discuss with the endocrinologist. What you have is a 'medically induced' form of Addisons but which unlike Addisons may be temporary and your adrenals might start to work again but it will take time. Meanwhile if you start to feal really unwell such as fever and vomiting or pass out, that might be signs of an adrenal crisis and you would need to seek emergency medical attention ie go to A&E so let those around you be aware. I hope you get an endo appointment soon so you can start to get sorted. I was in this postion a few years ago so learned all this by expereince. I ended up back on steroids as my PMR was still active so that solved the problem for me.
Thank you for the info 👍
More pred or switch to hydrocortisone really. Both are approved for replacement therapy in adrenal insufficiency and it comes down to which you prefer and suits you better. Both steroids so similar but different side effect profiles. If your PMR is still active then pred is the preferable option.
And it isn't just QOL - corticosteroids are essential to life and if there isn't enough circulating you may become seriously ill - an adrenal crisis can be fatal if not recognised and treated in a timely manner. The pred/HC isn't to "produce" anything, they do the same as insulin does in Type 1 diabetes or thyroxine in thyroid disease - they are replacement therapies.
If I am basically ok on 4.5mg just can’t reduce , is it ok to stay there , or is that just like an ostrich burying its head and hoping everything will be ok . What I mean is will this problem just get worse if it’s not addressed ?
I think that something to discuss with Endo - plus you need to know whether it’s totally down to adrenals or part PMR as well.
As DL says - at this stage it is a mixed bag of why you need a given dose. Is the block on reducing further purely adrenal function lagging WAY behind - it takes far longer than even endos think, talking years not months sometimes and requiring tiny reductions a long way appart, 3 months and 1/4mg for some - or is the PMR still chugging away in the background. For most people it is probably both and it can be very difficult to tell which is doing what.
If it is decided your adrenal function is shot and not going to recover, then a common PRED replacement dose is 5-7mg per day which obviously can cover both factors nicely. The split HC dose is 15-25mg daily and supposedly mimics adrenal function better but won't be ideal for PMR that is still there and needs a similar amount.
"The goal of glucocorticoid replacement in adrenally insufficient patients is to abolish symptoms of glucocorticoid deficiency and prevent adrenal crisis while avoiding over-replacement. The cornerstone of glucocorticoid replacement is oral hydrocortisone, typically 15–25 mg daily, taken in divided doses. Total daily hydrocortisone requirement is dependent on body surface area with normal cortisol production rate about 6 mg/m2/day.19 The first dose, generally 10 mg, should be taken immediately on wakening.20,21 A further one or two smaller doses should be taken at 4–6 hourly intervals, with the final dose taken more than 4 hours before bedtime. Typical dose regimens should be tailored for body size/weight; however, there is significant inter-individual variability as absorption and disposal kinetics differ."
ncbi.nlm.nih.gov/pmc/articl....
The Glucocorticoid Replacement bit I took that from is all worth reading probably.
My synachten test showed my adrenals were very bad and endocrinologist told me to stay on pred. 5mg. Maybe due to PMR issues? though he never mentioned changing to hydrocortisone. Many tries to get any lower over last few years failed miserably though now on 5.5mg. I do also have ME and fibromyalgia which don't help the issue. You may well have better luck! Let us know how your test goes. Good luck.
My rheumatologist wants me to stay on 5mg as maintenance dose as I was unable to reduce.Too many issues and adrenals not working he said.One day at a time.Hope my body doesn't throw up any nasties but right now 5mg is my happy spot.😊
Interesting post as I'm on 7.5mg prednisolone and have been since October 2020. My rheumatologist is in no hurry to get me to reduce and I feel so well compared to how I was before diagnosis that I hope I can remain on this dose indefinitely. I also have a brain aneurism, and optic neuralgia, diagnosed several years ago, and I do wonder if the pred is helping to keep these under control. My optician has said that my optic neuralgia has improved since being on steroids. I'm 81 and would rather have a decent quality of life for as long as I have left.
I have been on pred for 4 years now have secondary addisons my endo has kept me on 5mg of pred and said i will be on that for the rest of my life.
I had a synacthen test in March while on 10.5 mg pred which I have been taking for 3 years. They sent for me in July and said my responses were very low and it was likely I would have to take some sort of steroid always. They also recommended I carry an emergency adrenaline injection and sent me some sick day rules which require additional adrenaline in stressful times. I confess to being a bit confused as I thought at my current dose of pred I was having a more than adequate amount of steroid.
Why did you have synacthen test at that dose….unlikely to be meaningful.
At that dose, your adrenals will still be asleep. In some cases they may start stirring, but usually mor around the 7-8mg mark, and most doctors don’t hink it worth testing until you get below 5mg Pred.
I was very spooked by the adrenaline injection request to my gp. I am mystified why at my present dose but my Rheumatologist likes to send me for tests . I think it was my very poor response to the synacthen injection that was the prob. I haven't seen the rheumatologist for 18 months - he does call me when i contact him and says he will send an app but nothing. I should press for this but he is very keen for me to try Leflunomide which scares me a bit so no appointment is almost preferable. I have to reduce slowly as i end up having a flare. Sadly I have rather lost faith in the medical support. Thank you DL as it is you guys on this site that keep us going.
Sounds as if Rheumy doesn’t really have much idea about how steroids affect adrenals - which is a tad worrying. Never been offered leflunomide or any other steroid sparer so cannot comment - but whilst they work brilliantly for some, they do little for others.
I’d be inclined to keep my head down, and plod on with a slow tapering plan and small steps - and reducing as and when you feel able to.. and if you were diagnosed the same time you joined forum [Oct 2022] then as many have discovered your PMR is still ‘there’ despite what many medical people think. As we say on many occasions, your PMR is your PMR, no-one else’s- that’s what some can’t seem to get their heads around.
Good luck.
Thank you very much. I cannot believe that PMR will ever go plus now arthritis etc ....Oh just been down to Wimborne to see aged relatives and we were shocked about how much development there has been especially around shaftesbury and the roads are so busy (or closed as around Bath). I suspect we are used to the quiet roads of Herefordshire/Wales. Take care. x
Still some quiet roads in Dorset... out of the holiday season 😏 - and yes a lot of development...
hi Gaz I'm sorry you are having such a hard time and I do hope you will get some reassurance from your Endo when you see him/her. I've been on pred for 3+ years for GCA and currently on 2.75mg (hurray!!) but diagnosed with adrenal insufficiency several months back when I was on just under 4mg. I've had 2 Synacthen tests and will have a third one next month. Basically my levels were very low and my endo gave me the option of going on cortisone twice a day which is a softer steroid and sometimes can help the adrenals to wake up. I asked to keep trying to reduce on pred as I'm worried that if my GCA is still lurking the cortisone won't hold it. Every .5 reduction was rough. My second test revealed some improvement but still not near where it needs to be. My Endo was pretty insistent about switching but said if I chose to keep reducing on pred in no way must I go below 2.5mg. The thing is I listen to by body and check for signs of crisis and generally I'm ok. My worst symptom is fatigue and the tingling I feel with it. I also get a lot of headaches. But I can function well. Sick day rules are very important. I think you can get a copy on this site. Good luck with your journey.
Gaz
as per LJ comments here are SDR from endocrinology.org -
endocrinology.org/media/416...
Thank you 👍
I have just reduced from a flare protocol period to 7.5 mg prednisolone and seem to be ok except for the tingling and fatigue, which is still there, though at a lower intensity than at 10 mg. I'm 3+ years since diagnosis and it took 3 years to get from 15 to 5mg, (very slow tapering) when a massive flareup halted my slow progress. Is the tingling and fatigue a symptom of PMR or too much prednisolone?Also please can anyone remind me of sick day rules.
Does a cortisol test tell us about adrenal function, and when do we ask for this test.
Sorry for questions. Am I posting in the wrong place? Grateful for any advice as always. Thankyou!
See these links -
healthunlocked.com/pmrgcauk...
medicinehealth.leeds.ac.uk/...
And this -
endocrinology.org/media/416...
Some doctors will test at 5mg, but others like you to be a bit lower..
Thankyou dear DL. I will print and file these links for easy reference. Xx
Hi Gaz, I have been on Prednisolone for 16 1/2 years. I have tried unsuccessfully to taper on several occasions, due to going too fast (as per GP & Rheumatologist’s guidance of 1mg per month) I was lucky enough to stumble over this amazing site a few months ago and I have now successfully reduced to 3.5 mg, which is the lowest I have ever been on using DL’s 5 week reduction method and going at 0.5mg drops at a time. I had a short synacthen test when I was at 5mg, but I had reduced too fast to get there and felt really awful, unsurprisingly the test was not good with the result being 90 something. I am about to start the reduction to 3mg and then stay there for a while and get another SST. I’m sure that it will be better, but curious to know how much better! I do not have PMR, but seronagative RA. Good luck with your taper.
I was 9 yrs and I to insisted on getting tested and my adrenal function was 25. Extremely low. My rhumitologist was yelling at me if I caught anything ( during covid) I'd be dead.Off to endocrinologist and actually he just wanted me off prednisone because I'd been on prednisone so long.
He literally just about killed me. If ever to do it again I'd stop and stay put allowing them to kick in more.
I change sometimes my actual date getting off prednisone because I literally was dying when I got to zero and it took months before I got out of crisis and then a good 18mos for me to really start feeling more normal.
Good luck
Unfortunately for me I was a bit older than you so I missed these years leading to retirement. I went into early retirement which financially was fine. However the prednisone masked arthritis and dupuytren's in my right hand. Still haven't found a drug to help mind you my rhumitologist is about to be fired. This is my 2nd rhumitologist because we moved cities. He's an unbelievable ass and lier. Called him on it and I always bring a witness. So not just my understanding. It's been a rough 1st year with 2 operations but I can see a light. Up for a 3rd operation but has nothing to do with prednisone masking things.
I was in a diving accident my 1st trip off prednisone. My husband and I do shore diving and a rouge wave hit us apon entry and picked up both of us and threw us into the coral. He ripped his bcd; dive vest and I thought I was ok until days later. By the end of the day I could barely walk and excruciating pain in hip. Fast forward to 2 weeks ago after a dye cast mri I have a torn cartridge in my hip. Ughhh. Cortisone shots finally help. My rhumitologist thought I had bursitis and kept stuffing it off.
Finally found a Dr in this city who happens to be a orthopedic surgeon who gave me a proper shot and now surgical referral.
Sorry for the ramblings.
Just take it easy
I hope you the best in reducing. Remember you want to be the tortoise.
Hi Gaz, hope you manage to sort things out when you see endocrinologist. I’m 4 years into PMR and reduced to2mg. Had cortisol test this week and level was 270 the report said ‘normal’ I thought I should be nearer 400 to be normal? They are not taking any further action and I’m unsure what to do. I’ve been on 2mg for 9 months and am loathe to reduce as I am really tired every afternoon and the tingling has returned to fingers and stiffness in neck. I can live with these minor symptoms but are they caused by too low Adrenalin? As Pro says we each have our own unique PMR journey and very few out there seem to understand. Good luck on your journey.
Not sure your symptoms are adrenal related…apart from the tiredness. Do painkillers help the tingling and neck - plus when you say returning, where they part of your issues pre diagnosed? If so maybe try going up to 2.5mg or 3mg and see if that makes any difference.
Re adrenals, just stay a 2mg [or increased if that helps other symptoms] for a while, and give them a chance to catch up…
Thank-you Dorset Lady for your sage advice. I only ever had neck problems and tingling fingers since the onset of PMR and after being on 2mgs for so long and feeling fine I’m not sure why these symptoms have returned. My tiredness comes and goes, but at present has returned during the afternoon, maybe the change of season, end of holidays and back to routines.
Is 270 Adrenalin / cortisol level low or normal for where I am on the PMR journey? Should I talk to my GP or just carry on with current regime.
Always so grateful for any help from Forum, seems like the only people who really understand PMR.
Would say tired is adrenals still struggling - and they do take a lot longer to get to full function even after finishing Pred completely- anything up to a year.
Your reading are with the normal ranges - and again it’s a personal thing, and of course after 4 years of Pred who can say what normal is. As there is no warning comment on levels then I wouldn’t get worried about it, by all means speak to GP, but not sure how helpful they will be.
If you aren’t overly concerned about other issues, I’d just stay out at 2mg for a few months to give adrenals a fighting chance, and then think again..
Don't confuse adrenaline with the effects of low adrenal production of cortisol - the normal level of adrenaline is low, about 10ng/ml, but it can increase 10-fold in exercise and 50-fold in stress situations. That response may be missing but you should be OK for normal function. They do different things. Your cortisol is in the normal range - particularly in view of the fact you are still on 2mg pred which will be suppressing adrenal function to some extent, with 140 being the bottom of the normal range.
mountsinai.org/health-libra...
Thank-you for that, it is all a bit of a minefield but I am grateful for the reassurance.
Thanks for the reply 👍
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