hi everyone, following Kendrew’s earlier post on adrenal issues, I wondered if my own symptoms of chronic fatigue, nerve type pain/sensitivity in random places, headache, neck pain and sinus inflammation could be associated with poor adrenal function?
I have been on prednisolone for 4 years and every time I get really low (currently trying to reduce to 0.5mg) I get these symptoms. Dr last time said it was fibromyalgia which I know it isn’t. He increased the Pred and it went away. I did a HIIT class on Sunday and have been struggling since. If it is adrenals, will it eventually go away without increasing Pred please?
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Bloomsbury123
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If he increased the pred and it went away - it isn't fibro is it!!!! In fact - if HE thinks it is fibro - why did he increase the pred!
Personally I'd suspect the PMR is still lurking - and the HIIT session wasn't a very good idea, especially if you are suffering fatigue anyway.
Has it occurred to your GP to take a basal cortisol blood sample to see what your adrenal function is doing? It will separate out definite adrenal insufficiency and normal patients - and if you are in between, some idea of the status of your adrenal function
He didn’t think it could be adrenal insufficiency at such a low dose but I’ve felt like this before and it was when I got really low on Pred. I agree, with hindsight the strenuous exercise was daft 😬 I will send an econsult and ask for a cortisol blood test and see how I get on.
Wants to keep up with his reading! A study from endocrinologists at Imperial, London, decided the traditional 7mg equivalent dose was far too high - and 2mg can be plenty to keep normal function ongoing. Which can also mean, it isn't until such a low dose that some people notice. There is a lot of variation from patient to patient.
Anyway the body DOES start to produce its own cortisol as the pred dose falls BUT it may still be relatively low or unreliable for a long time - usually considered it takes a year even after getting off pred altogether to settle down. It doesn't just switch on like putting a kitchen light on - more like a dimmer switch and it builds up gradually. Most endos won't do a synacthen test until the patient is down to 5mg - and many like it to be 3mg.
The trouble is that at these low doses it is very difficult to tell which effect is which - even 1 or 2mg can be plenty to keep PMR inflammation under wraps too. And PMR frequently lasts more than 4 years.
The adrenals can cause the most awful fatigue, at least they did in my case. Ideally you should not increase unless the fatigue is really bad, I did actually go up from 5mg to 6mg as I could hardly move. Even lifting my arm was too much. If you can go to an HIIT session you are obviously nowhere near me!
It’s such a fine balance, whilst decreasing Preds. At present I’m on 9mg, decreasing one mg per month. I’m sure that my adrenal glad is confused….. I have PMR and taken Preds for 3 years - putting dose up and down due to symptoms returning. The fatigue is certainly due to lessening Preds (when I was on 15mg, life was so much easier - I have MS!) It’s good to share each other’s journey through this “minefield.” Take care.
it really is all about getting the balance right! I thought I was almost there but I think 0.5mg is too low for me. Good luck on your journey, it’s not much fun but good to share with people who understand it x
it’s nearly 5years since I finally got free off pmr it took over 6years of preds. I gradually reduced my steroids started 25mgs to get me over the line I was referred to a arthritis clinic who started me on methotrexate medication low dosage and helped me get off prednisone yo will get their eventually but it’s a slow process.
Hello, I sympathise with your symptoms. I have suffered with PMR for 15 years and have taken prednisolone for all of these years trying to wean myself off many times. I now take a maintenance dose of 5mg per day which prevents symptoms returning. Hope this is of some help.
Hi - I’m sorry you’ve had PMR for so long but glad you’ve found that 5mg keeps your symptoms at bay, I had always hoped I could manage without Pred, I’m still learning though!
Have you tried high dose B12 I felt very tired all the time and my Dr suggested this and it did help my energy levels. Also I take super magnesium tablet as well as Turmic.
Sometimes natural vitamins help the body to adjust to low dosages .
It is a struggle but you will get there
I would also suggest yoga and walking still excerising but no so hard on yourself.
I have been off pred for about 2 yrs but I still have PMR hanging around.
I did read from a study done in Aust. that it takes about 5 yrs to disappear completely.
Hi, thanks for your reply. I do take B12 and magnesium although I stopped turmeric a few years ago, might give it another go!
I just find it so hard to pace myself, I start to feel really well and think, thank God that’s all behind me and I’ve just got to get off Pred and then boom, it starts coming back again. I love yoga so will go back to some nice gentle hatha once the pain is under control - thanks again x
You have to remember that pred is only a management strategy - and you need enough to manage the inflammation and if you reduce below that level - the inflammation surfaces again and is enough to cause symptoms. I suspect for you it may be more about how much pred you are taking because you are so desperate to get off pred and not so much the pacing - though that is critical too.
hello Bloomsbury, well I didn’t have all the specific issues that you are having but I did have chronic fatigue and chronic neck pain. PMR is such a roller coaster of a condition! However I was on Prednisone for 6 years altogether with the usual tapering and increasing doses throughout until I finally decided enough was enough and battled with reducing and suffering pain. That’s not to say I nearly weakened more than once and was very tempted several times to increase my daily dose but I managed to stay on course and taper. The last 6 months were very trying and when I finally took my last dose there was no sudden return to normal. It took about another 6 months for my adrenal gland to function normally again and my energy levels were very low all that time and I still suffered from chronic fatigue a lot. However I persevered and overcame and now 6 years into remission it is all becoming a distant memory thank goodness so don’t give in or give up, you can win the fight! Good luck! Maureen
I am down to 3mgs per day but have been in a lot of pain since comi g down from 15mgs to 12.5. I have had all the pain moving across my shoulders and neck with swellings. Front neck looks swollen. Back pain girdle area and now legs and knees stop me walking so much. Haven't seen a doc since January. Unbearable by March. Painkillers prescribed but not helping much. I was very fit till February last year and after my first to my third covid jab I became worse as the year went on. Wasn't diagnosed till January after blood test. I haven't been give a Rheumatologist appointment yet. Very difficult being awake at 8.00 to phone for doc appointment as I have very erratic sleep pattern since taking Steriods. Also loads of weight gain. I feel for you all that have had it so long, my now closed surgery where at first my doc diagnosed and I haven't had an appointment since January, I don't even know a doc at my new medical centre. My brother's adrelin glands packed up years ago and can be very fatigued but has his meds changed when needs to be boosted.
You aren't reducing relentlessly from the starting dose to zero - you are looking for the lowest effective dose. You have to stay in the starting dose for long enough to get all the inflammation cleared out and only then can you start to reduce the dose successfully. I would say that you started to reduce too much and too fast for a successful outcome , Your GP has made a right pigs ear of it. You probably need to start again with a doctor who knows what they are doing and takes responsibility - which means seeing you.
Thank you. 15mgs was only for 2 weeks then 12.5mgs for 2 weeks, 10mgs for a month and so on every month I had to reduce by 1mg. Surely doc should have kept me on 15mgs longer to kill off the inflammation before her reducing me and checking me after a few months. I will write my new gp a letter with everything detailed and see if I get a response. I might even get to see a specialist and a steriod meds card to carry. Thank you.
“Surely doc should have kept me on 15mgs longer to kill off the inflammation “
Doesn’t quite work like that, but longer than 2weeks is really required to mop up existing inflammation- however the inflammation occurs every day you have the underlying illness.
I've just explained it to you on another reply of yours - the 2 weeks at 15mg was a bit short but it DID work, you wouldn't have got down to 3mg before the symptoms came back if it hadn't.
The pred doesn't "kill off the inflammation" - it is an ongoing process due to an underlying autoimmune disorder that makes your immune system attack your body tissues by mistake. As long as that is active, inflammation is created every morning, starting about 4-4.30am . You take enough pred that day to clear it out - and the same the next day, and the next day. That goes on as long as the autoimmune disorder is active - might be 18 months, might 4 or 5 years, might be even longer for an unlucky few. It is a bot like BP drugs - they manage the raised BP, they don't cure it, however long or how much you take.
This is what I wrote on the other reply (in case anyone else is interested)
"No - longer at 15mg won't make any difference. You aren't supposed to be reducing relentlessly to zero - you are titrating the dose to find the lowest effective dose for YOU. The speed of reduction is often immaterial - it is reducing too far that brings the symptoms back.
The pred has cured nothing, it is a management strategy to keep the inflammation under control to allow a better quality of life in the meantime until eventually the underlying autoimmune disorder that causes the symptoms we call PMR burns out and goes into remission. Only then will you be able to get off pred altogether - and it may take a couple of years or it may take several years - or anything in between. Pred is like BP drugs for hypertension - they don't cure it, they keep it under control.
In the meantime - you could try adding 5mg to the dose where you have flared and with a bit of luck that should be enough. You obviously do need a fairly low dose though with the speed you have been reducing I doubt it is 3mg, it takes time to build up enough inflammation to causes symptoms and you often miss where exactly it was when you are going down 1mg per month. After a couple of weeks at 8mg, maybe 10mg, you could then drop back to 5mg for a while and see if that is enough. The average time to get to 5mg from the starting dose of 15mg is 18 months so you were doing really well - until you overshot."
Only doing as doc says. It seems you mean I can up my steriods or down them without docs say so.! I got a lot of pain back at 10mgs and as i say no doc has kept in touch with me.
Well that may depend on your doctor..many patients have permission to amend dose as necessary -but some don’t. Mine was happy as long as I kept him informed -but that was pre-Covid., and he was one of the sensible ones.
But if you have no or little advice from yours, they may question why you want to increase -when they are expecting you to decrease….
Not really - it was a suggestion as to what has probably happened and a way to remedy it if my suspicions are correct. You need to present it to your doctor - if you can get hold of him!
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