My rheumatologist referred me to an Endocrinologist because a synacthen test showed adrenal gland suppression. That sounded serious and really scared and depressed me, but at the same time I thought it would be good to see an expert who could sort me out. When I saw him 4 months later he said 'of course your adrenal glands have packed in because by taking 7.5 mgs of pred that is nearly twice as much as the body would normally make so there is no need for them to do anything'. He added words to the effect the glands may or may not start up again but there is no way of knowing until the dose is down to 5 mg or less. He muttered something about doctors who ought to know better than send along people like me and sent me on my way. Just thought I'd let people know.
Adrenal suppression - FYI: My rheumatologist... - PMRGCAuk
Well that's told the doctors, tangocharlie! However, he isn't quite correct. 7.5mg of Pred is not "nearly twice as much as the body would normally make". According to my rheumatologist (a bit of an expert in PMR/GCA, involved in research) 7.5mg of Pred is about equivalent to the amount of cortisol (natural steroid) the body would normally make. Hopefully, slowly slowly with your reductions, and your glands will gradually catch up as you reduce.
Goodness me. We pay dearly to see our highly trained professionals to guide and lead us....
At times I do become rather concerned and most annoyed cross that we are told such conflicting information.
My Rheumy told me that I would need to stop taking my meds for a few days to see if my adrenals would function or not before having a test. PMRpro quickly put me on the right track not to do this - bless her.
Thank goodness for the wisdom & inherent value of this site
Abundant blessings one and all.
By joining one of the three registered charities operating in the UK, PMRGCAUK, PMR&GCA UK Scotland and PMR&GCAuk North East Support and who who have support groups throughout the UK and opening more in areas which are not covered at present when volunteers step up to the plate, then you would find so much accurate information.
There were none 8 years ago and all three operate on a shoestring and are run by volunteers, except for two people who are paid for 2 days a week and that has taken a lot of hard work to achieve.
All three have websites and all three run helplines and two run forums.
PMRCA UK runs this one with volunteers administrators.
patient.info/forums/discuss... the forum and where 5 people, nearly 9 years ago, and the above is the result. 20 people joined the 5 and paid their own way to London and with Professor Dasgupta decided to go ahead and form a Charity.
I think you're on the money with regard to phsiologic levels of cortisol vs 7.5 milligrams of prednisone.... cortisol needs and/or subsequent physiologic levels vary from day to day depending upon the amount of stress we are subjected to. It is my understanding that we start stimulating are adrenal glands to make cortisol once we get them to 7.5 milligrams of prednisone.... yet this number varies from person to person. I am presently down to 5 milligrams but will step up my dose on high exercise days, well I'm traveling or if I have a fever..... however I am not certain what dose is the correct dose in every situation.
Part of the problem is that the bioavailability of corticosteroids varies between 50% and 90% depending on the person. My 10mg dose may be effectively 9mg, yours may only be 5mg. Doctors seem unaware of the pharmacology.
And some people can make small amounts, others find their adrenal function just slips back into place - but too many doctors want a one size fits all and it ain't going to happen!
Are you sure it's a good idea to step up pred dosage to deal with "possible" additional stress caused by travel or exercise? I feel pred is designed to help us with PMR pain and inflammation, and the other effects are side effects we must live with in order to let our normal bodily functions get up to speed as we taper. I'm currently at 3 mg, working on a slow taper to 2.5. I've noticed a distinct inability to deal with stressful situations or even unpleasant news items. I was startled awake the other night by someone making a loud noise just as I'd dropped off and lay in bed with a racing heart for some time, something which would normally have settled almost instantly. The panicky sensation didn't go until I got out of bed and moved around. Thought this was odd, but presumably just part of having so many hormones knocked askew by pred. I will never take pred to deal with these issues unless it turns out my adrenal glands are unable to return to normal. I know this is the case for some people.
In this regard it's very hard to distinguish between your true physiologic needs for a corticoid vs a subjective stress response...... what is the best objective test for adrenal deficiency after the adrenal gland has been suppressed by physiologically high prednisone levels.. it would not be practical to consider objective tests such as ACTH/ cortisol testing on a routine basis. Assuming that your PMR is under control interval SED rates may let you know whether you're taking the right amount of prednisone. Further objectivity can be obtained by measuring your morning oral temperature..... adrenal deficiency sometimes results in a lower body temperature but this is not reliable for everyone. Nevertheless following your basal temperature over many months may give you an idea as to whether you are adrenal deficient. Common sense will tell you that any real stress situation such as illness, fever, excessive exercise, stressful traveling, injury dictates the need for more corticoid in your bloodstream.. the real issue is how much more?? Bottom line is that I don't know but I will neverless add a milligram or two of Prednisone to my regular regimen on any given high-stress day... one can choose not to do this, but must accept the fact that you will be relatively adrenal deficienyduring this stressful interval or at least hope that your adrenal glands maybe responding.... presumably you have some innate adrenal function after your Prednisone has fallen below 7.5mg or 5mg......different for each individual
I appreciate what you're saying. I just feel that in my case the pred side effects are something I can do without and I'm prepared, within reason mind you, to live with the consequences. On the other hand when I was at 5 mg I went on a long train journey (over 24 hours each way) to visit my daughter and was able to carry on with my scheduled taper although I hadn't planned to. This is quite contrary to what many advise and experience, but I had no ill effects, in spite of coming down with a short lived cold on the way there, and a very busy side trip to Toronto while I was feeling wretched. I think we need to give our bodies a chance to function normally. The body has a wisdom of its own.
How interesting Heron - can equate to exactly what you are saying re the occasional panicky sensation + racing heart as you are tapering. No two days are ever equal however.
I have been sitting at 15mg hydrocortisone (equivalent 3mg pred) for almost 4 months now.
Have torn tendons in so many places now so will look at attempting to drop to 2.5mg in October
This is 4th attempt but only tapering as slowly as my body will allow - always a sprat to catch a mackerel.
Blessings once more
I'd been worried I was trying to reduce too quickly, but when I look at my calendar, and remember that when I was on my trip I was starting the taper to 4.5 and that was April, and now, late September, I'm working towards 2.5, very slowly, I think perhaps it really is dead slow nearly stop!
The synacthen test does not assess whether your adrenal glands are presently functioning or not - if you are on more than 5mg of pred they probably aren't. That is a basic fact and why you need to be careful at these low doses as there are no reserves if you are under stress.
What the synacthen test can do, when done and read properly by an expert, is show whether your adrenal glands are CAPABLE of producing any cortisol when required. If they are damaged and unable to do so, then all the slow reduction in the world won't get you off pred. For most people they will get off pred for that reason if they go slowly enough - which is the biggest reason not to rush off pred at these low doses.
And it was an endocrinologist who told one of the members of the charity that it would be a good idea for all patients who struggled at or below 5mg to have a synacthen test. But it does have to be read by someone who knows what they are doing - a doctor in Scotland developed the concept some years ago. The results are different but he can identify what is what.
PMRpro - Is a synacthen test world wide? Recovering from usual winter upper respiratory virus (mild symptoms wise) but felt indescribably dreadful at times & wondered if my adrenal glands capable of coping as still don't know if they are functioning very well............ still sitting at 7.5mg x 2 daily hydrocortisone almost 4 months now but have torn tendons in sooooo many places ;( ;( ;(
As far as I know but they may call it an ACTH stimulation test or cosyntropin or tetracosactide test. As you'll have seen from the discussion already there is some dispute about whether it is any use while still on pred but I do know of a doctor in Scotland who uses it on all his longterm pred patients to assess whether the adrenals have any chance of waking up. It is downright dangerous to say you can't use it until the patient is off pred - they may have had an adrenal crisis before then but you do have to look at the figures very differently.
You SHOULD be OK on that dose - but you may not cope with stressors and may need a bit more - but only your doctors can say that. The same applies at the lower doses of pred of course - if you haven't got enough to deal with a situation you may feel decidedly unwell for a while and if it is ongoing for days.
Thank u PMRpro - have my checkup next week with Rheumy will revisit the question again about my adrenals - written the names down this time.
Are u able to expand further on why if my body is under going stressors (illness &/or external) what is actually happening physiologically speaking?
I can't find anything online to explain that doesn't come with a "you have adrenal fatigue and you need this..." - except this one:
Adrenal fatigue isn't a real illness, it's one of the many "diagnoses" created to sell some fairly useless and sometimes dangerous products.
But does this answer your question? You need adrenaline and cortisol to cope with stressors - your body isn't able to respond properly. In a way it's a bit like pressing the accelerator/gas pedal on the car and the fuel feed is blocked - you'll struggle to get up a hill.
Your adrenal glands will get there in the end, even though they are suppressed at the moment, but as PMRpro says slowly is the key.
In my case, between the levels of 6mg down to 3mg in 0.5mg steps and on a slow tapering plan, mine certainly were still on holiday! Some days the fatigue hit me like a brick wall! But once I got below 3mg they suddenly woke up! But don't expect miracles, it can take up to a year for your body and its various hormones to get back to normal after you've come off Pred - still some way to go personally.
Incidentally, it took me just over a year to get from 6 to 3, and almost another year to get to zero. Unfortunately there is no quick fix.
By then were the side effects of the meds going away? I don't mind the timeframe if I start to look more normal 😊
It depends on the person - I lost a lot of weight (by working VERY hard on it) while still on above 10mg pred. My waist reappeared and my face went back to its normal shape. I'm not slim but then, I haven't been that for years!
We've just been at Lake Garda for a few days - believe me, I felt slim!!!!!! Half the world must be on pred...
No...half the world just eats too much . We have something to blame it on at least
Yes most of them, including the 'hamster' look.
Not sure how much was purely Pred - I think about a year after I lost my husband I went back to eating properly prepared foods, rather than rushed easy meals when I was his carer, particularly in the last few months when he really wasn't interested in food, and when he was - he wanted it then and there! I also decided I needed to try and get myself a bit fitter.
It's surprising, when you look back, how little time you have to think about yourself when you are caring for a loved one, you just get on with it, but any thoughts about 'you' go out the window. However, having said that, I'd rather have him as he was than not at all, but such is life!
In some people the adrenals never wake up and one person whose adrenals have not and never will wake up posts on here.
Remember, when you have PMR and/or GCA, whilst on the journey into remission, you age and that can have an effect and you can and do encounter other illnesses which can also have an impact.
Absolutely Sambucca - I have never known to be such a dab hand at juggling so many balls with the new challenges faced on this journey of PMR - talk about ageing fast but gracefully I will.
Always tempered by the fact that there are so many others like your good self who have been dealing with this way longer than me.
The fatigue u mention hitting you like a "brick wall" - do u think this was as a result of your pred reduction even tho u are doing this slowly?
Once u were below 3mg u say "they suddenly woke up" - what were the signs? I am trying to gauge if my adrenals are responding even just a wee fraction.
I have been craving salt recently (had very mild upper respiratory virus) altho no extra secretions so not sure why my body wanted salt & see that can be possibly linked to adrenal functioning.
Blessings 2 u once more
I only assumed the fatigue I suffered between the doses 6mg -3mg was adrenal related because it was different to the fatigue I had pre diagnosis - that was all encompassing, all day, whereas that whilst I was on Pred was spasmodic.
As we always say everybody experience is different, we start at different times during the illness, some diagnosed early, some very late, some with PMR so on lower doses, some with GCA so much higher doses, some have one disease, some both, some unfortunately get GCA even though they are already being treated for PMR. No wonder we all react differently at each stage.
Obviously I can only tell my story, but I think because I started at such a high dose (80), I didn't get some of the related symptoms that others have - no fatigue until reaching 6mg, no flares (although dose was increased through raised blood markers due to stress - no symptoms, but over anxious GP who missed original diagnosis!).
The ""adrenal" related fatigue seem to follow no particular pattern, after some activities where you would expect it to happen, it didn't - but on the other hand if I had a small amount to eat, like a scone or a flapjack with a drink and then went shopping, the brick wall hit me half way round the supermarket! First time I thought it was a one-off, but it happened a number of times so I knew it wasn't. However, if I sat down for, say 30mins after the coffee & snack reading a paper and then got up to shop I was fine! So I put it down to the extra adrenaline required to process that small amount of food was not forthcoming if I did something active straight away. Strange, but true!
Not sure about your salt craving, but high doses of Pred upset lots of your body's functioning, so could be related!
As for my signs, other than not having the odd fatigue moments described above, I just generally felt energised and more like the old me! I think that may also have coinsided with my GCA finally going into remission.
What a wonderful journey we go on! Take care.
Hi Dorset lady - bless you with your indepth response & sorry I am only answering now.
So pleased to know that the fatigue moments are less now + your GCA having finally decided to go into remission, this is wonderful & heartening to read.
I have my Rheumy check up this coming Thursday & have some questions for him re my adrenals + my list is usually lengthy.
Having 2mg (hydrocortisone) made up presently to eventually replace my usual 2.5mg, so the drop will be minimal altho my sensitive bod will notice no doubt - slowly catchy monkey!!
Abundant blessings as always
Hi I've been on pred for 7years and experienced the same as you in that my adrenals have packed up. I can't do anything until at 7mg or lower when my Endocrinologist can then put me back on hydrocortisone which I felt helped me a lot a few years ago when I got down to 5mg. Now I am on methotrexate as well as 9mg pred with a view to reducing the steroids and have learnt that I have to read the warning signs and rest as much as I can and try to accept my situation as things could always be so much worse. Really hope that helps a little.
If your adrenals have packed up - methotrexate won't make a blind bit of difference to your pred dose. Hasn't anyone considered swapping your pred for hydrocortisone? That is fairly standard practice to try to poke the adrenals into life - and at the same time manages the PMR. There is one lady on the forum who is managed with hydrocortisone because she can't tolerate pred. The only difference is you need 2 doses a day instead of one because of the duration of action of hydrocortisone being shorter than that of pred.
Thank you for replying....I feel like nearly giving up with it all!! I was on hydrocortisone when on 5mg some time ago and it helped a lot but have been told several times that I can't go on it until lower than 7mg. The methotrexate is purely to see if it helps my pmr which it does seem to be doing a little it is me who only wants to reduce the pred. Can't see any way out of this vicious circle.