Hi everyone. I was diagnosed with PMR4+ years ago. I also have other health issues. I eventually managed to reduce to 5mg Pred using the slow taper method. When my Rheumie phoned me for a review recently I explained I was extremely fatigued and questioned whether my adrenals were struggling. She said she had not thought of that - but referred me for a synathecin test. The results - confirmed by an endocrinologist- stated that I have adrenal insufficiency. I was sent an online booklet and advice that I would need to take lifelong Prednisolone 5mg daily. I am struggling coping with the pain and fatigue . Do I increase the pred again? This site has kept me going over the past few years as I find GPs struggle with PMR. I never see or speak to the same person twice. I would appreciate hearing how others are coping?
Many thanks Bren@PMR
Written by
BrenatPMR
To view profiles and participate in discussions please or .
But the Drs will need to consider if you need Pred for the PMR as well as the Adrenal Insufficiency - it’s very important that you have a Red Steroid Card which l wrote about yesterday & it is mentioned in the FAQ - on the Adrenal Post as well as on its own.
Kind Regards
MrsN
It is very important you always carry spare Prednisolone- have they mentioned you having a Back-Up Hydrocortisone Kit?
My Mum developed Adrenal Insufficiency following long term steroids (60mg per day) because she had brittle asthma. She was off Steroids (Prednisolone) completely when she had an Addisons Crisis following a Medical Procedure, they did not follow protocol & give her hydrocortisone cover, hence a total collapse!
Her long term treatment included Hydrocortisone 3times per day but if she ever had an asthma attack/chest infection they always prescribed Prednisolone so as there was never any confusion of the dosages.
That’s why l’m always very cautious regarding Surgery/Procedures if you have any risk of low adrenal function.
Thank you MrsNails for your reply. I omitted to say they sent me a Red Steroid Card. No mention of a Back-Up Hydrocortisone Kit though. I will investigate that.
Yes, that is important incase you have a Vomiting Bug/D&V so can’t keep anything down. Usually if you have a cold or generally unwell you can manage Oral Meds but best to be prepared then hopefully you’ll never need it 🙏🏼
The blue ones are the old ones, just a small card like a greetings card, and had space to record your dose on them. The new ones are more an advisory card, like a donor card, to tell healthcare professionals that you are a long term corticosteroid user and that they need to watch out for signs of adrenal crisis.
On a dose of 5mg it is quite likely that you will appear to have adrenal insufficiency, it is high enough to still suppress the HPA axis and production of cortisol. I think it is SheffieldJane who was deemed insufficient at 5mg but when she got to 3mg and had another test it was improving. So it is possible it WILL get better but it won't be fast. Snazzy also tells us she felt awful for a span of doses but did manage in the end.
Dr Rod Hughes, a very good PMR rheumy, likes to keep people at 5mg for up to 9 months to let the body catch up and find the rest tends to be easier.
Though I have to say, if a doctor told me they were happy with me at 5mg, I'd take the offer and run!
Still haven't had cortisol blood test, have rung hospital twice!...anyway, Max did say to me you may have to stay at 5 mg when you get there....who knows....but I was hoping for a p arty at 4 mg!!.......
How a Rheumy hadn’t thought of adrenal insufficiency beggars belief given that their bread and butter drugs are steroids. Personally I think giving up on your adrenal glands at 5mg is a bit premature but what do I know? My Synacthen test was done at 4mg and wasn’t very special and I didn’t need that result to know, judging by how I felt. The Endocrinologist wanted me to slowly reduce to keep challenging the adrenals to try because even 4mg he felt was still enough to keep them snoozing more than they should be. He wouldn’t even do the test at 5mg as it might not be a reliable reflection of their potential function. So of course your test might show some insufficiency but not necessarily permanently. Sure enough by about 1mg the test was much better but it still took about a year to get from 1mg to zero. Judging by what others have said here, there seems to be a variation in opinion and of course you throw in individual differences.
In my experience most of them think that it is very rare for adrenal function not to return - whereas it is about half and half - although the half that struggle may also be struggling because of the PMR so it is difficult to decide which. But then, they also believe that almost everyone iwith RA does well on methotrexate whereas the actual figures are that for about a third it doesn't work at all and another third give up because of adverse effects ...
I found 10mg was the time I felt best in terms of energy. I don’t know how I managed to keep going down from 7 mg as it was months of living like a shadow of myself. Just had a strong hunch that it was a necessary evil, though I wasn’t having any disease symptoms.
I`ll bear that in mind...but it is hard not to overdo, especially when we have been struggling for many years....human nature really, but we know what will happen if we do....wish other people understood it...but not a lot we can do about them...
PMRPro is right. I Showed adrenal insufficiency when I was on 5 mgs of Prednisalone, once I reduced to 3 mgs my Adrenal function had recovered significantly. Your doctors seem to have given up without a fight. My Endocrinologist was prepared to treat the insufficiency and was keen to swop me to Hydrocortisone. Did your Endocrinologist just confirm the diagnosis or did they confirm that nothing could be done? It might be worth returning to the Endocrinologist to see if it can be treated.
Can I ask how long was the time between 5mgs and 3mgs with the endocrine balancing act in between? My rheumy seems to think I can drop 1mg a month until I get down to zero. I'm taking what she said with a pinch of salt.
My first Synacthen test was mid November 2019 (abnormal) on 5 mgs of Pred. my second one was February 26, 2020 well within the normal range on 3 mgs of Pred.
I think your experience supports those doctors who think one should be on a dose lower than 5 mg before having the test. Could be that some of us will not really be needing more than 5 mg from our pred and it's not till we are lower the adrenals decide maybe they should stir!
I would too - unfortunately for her theory you aren't ever reducing relentlessly to zero, you are titrating your dose to to find the lowest dose that manages your PMR symptoms as well as the starting dose did. That is by no means the same thing - and as you get lower, you also have the problem of giving adrenal function time to recover - and that rarely does so at the same rate as dropping 1mg pred per month.
I'm so grateful to this site for educating me. I used to hang on every word the clinicians spoke. But experience has taught me otherwise. You have to listen to your own body and keep asking questions.
This is me atm ! Im on 6.1/2 and fighting to function properly . All i really want to do is sleep. Feel this is the worst ive been so far , stuck here fighting to have my normal life back !
BrenatPMR I’m now tapering 0.5 mg every 4 weeks now at 2.5mg my rhuemy has me booked in for a synacthen test when I get down to 1mg also a bone density test, my energy level seems to be improving maybe my adrenalin is kicking in I hope so!
Hi Sheffield Jane. I just got a letter, booklet on adrenal insufficiency and a steroid card. No debate offered. From most of the comments it appears my adrenals are more resting than given up. Think I will contact hospital and try to get some more info. I do really value everyone’s advice. Thank you.
It is something you can do yourself if the PMR is happy enough. SheffieldJane had a poor result at 5g, a few months later at 3mg it was improved. You can't predict at 5mg - just slowly drop 1/2mg at a time and slowly, using a slowed taper helps, and being patient.
Thanks for the information here, esp the distinction between the purposes of a synacthen test and an a.m. cortisol level test. Interesting -- feel I'm just dipping my toe in the edge of vast ocean...
You say you are struggling with pain. You need more pred just now, not just the adrenal support dose. Have the doctors forgotten the reason you are on pred in the first place, which is to control PMR pain? Reminds me of a friend, an older man, who several health issues, including PMR which he at the time was on about 8 mg for - he had some other health crisis which involved a very large dose of pred to treat. He was in the hospital. When he no longer needed the pred for the other problem, it having resolved, they stopped all his pred. He had to remind them he was on long term pred for PMR. 🙄
The other point, touched on by PMRpro and also confirmed by others in this thread, is sometimes the adrenals don't show signs of activity at 5 mg pred, but do start to reactivate as the dose is carefully lowered.
Really finding the posts on this subject very helpful. I’ve been stuck on 5mg for maybe a year now. Just can’t get any lower. I am now waiting or a synathecin test at my rumatologist sugggestion.
My mobility is suffering. So very stiff. Getting close to needing a stair lift.
After reading all these posts I am wondering if I maybe need more pred !!
Unless you have a nother condition like severe osteoarthritis, it seems it might be worth an experiment to take a few more mg of pred for a day or two and see what happens.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice please. Could I have GCA?
Any advice to get back on track please?
please can I have some advice
Any advice please.
