I'm being as patient as I can but the A. G. Just don't want to wake up. I've been trying to get below 7mgpd since March. I've tried all suggested methods and now trying 6.75 mgpd and the glands are still playing hide and seek and complaining all the way. Oh WISE ONES, what suggestions do you have for me? I've teased them in every way I can think of. ( history : I've been on prednisolone for almost a year, started on 15mg. For PMR ). HELP!
How do I help the Adrenal Glands to 'wake' up? - PMRGCAuk
How do I help the Adrenal Glands to 'wake' up?
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Janll
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I had the same problem in January when I got to 5mg. In fact I was very ill indeed because of adrenal insufficiency. Ade and Rena just would not cooperate! Increased pred and have only gone down 1mg since New Year. Am waiting to see endocrinologist in June for Synacthen test. I think the answer is simply to have a lot of patience and decrease really slowly over a long period. Believe me I never want to be that ill again
DorsetLadyPMRGCAuk volunteer
Hi Janll,
Patience, and tapering slowly....mine took the best part of a year to finally realise they needed to work again! During that time I only reduced 3mg at 0.5mg a time, staying at a couple of doses for longer than normal due to cataract operation, visit to NZ and bad back all as minor hindrances.
As you've only been on Pred for about a year, you have some way to go yet - sorry!
You will get there eventually, but maybe not as quickly as you would like!
What symptoms do you have? Is your PMR pain completely controlled and it's the fatigue which is the issue? You say you've been trying since March - but this is only April 12th!
At 7 mg I felt completely "flat". In fact I remember complaining about it on one of the forums. Just to put this into context, this was in late 2015, when I had been on pred since June of that year. One year later and I was at 2.5 mg. So the intervening year had been very very slow. Four months later and I'm finally at 2. From now on there is likely no way your taper is going to resemble any previously successful reductions. This is moving from "dead slow" into "nearly stop" territory. My motto is PMRpro's adage: "It isn't slow if it works".
Do everything you can to reduce the inflammatory component of the disease, get all the rest you need - you are a poorly bunny and need to remember that. If you had the flu or a broken limb you'd be looking after that wouldn't you? If you family doesn't get it, give them a little lecture loaded with medical terms about adrenal function. Don't downplay your symptoms. This too shall pass!
My symptoms are the same as when I was first diagnosed in October 2015. Markers were high, pain in neck and shoulders and fatigue. When I saw the Rheumy in April 2016 he wasn't convinced it was PMR but tried me on pred then. I really cannot remember how 'well' I felt from then until October 2016. I just got on with stuff. By Oct. I was down to 12 mg, Dec. 7-6 mg. I think that is when I noticed the stiffness in my neck and back....... getting lower than 8 or 7 mg. By middle January I had more or less crashed at 3.5 mgpd. I went back up to 9.5 and have been working my way down since then. I guess looking back I have been too eager to get off them but not wanting the crash to happen again. My Rheumy is still not convinced it is PMR and I am having other tests but the NHS is slow in arranging these. Sorry this is so long in the telling. I still get pain and stiffness in my neck and back and the fatigue is very dibilatating. Sometimes in the day my stiffness is hardly noticeable, it comes and goes, without warning or reason. The fatigue, I think, is the glands not wanting to work. We, each, are different in our journey. Life isn't straight forward, sadly.
Well I think I know what everyone here is going to tell you. You probably do have PMR and you almost certainly have been wrongly encouraged by your doctors to reduce far too quickly. The earlier reductions could have been all right, but it's important never to reduce by more than 10% at a time, and to stay at each level long enough to be sure the symptoms are still under control. Pred doesn't cure anything, it just dampens the inflammation and helps us to function more normally. Eventually the disease burns out but that can take several years. I'm kind of a poster child for successful use of the dead slow taper plan and avoiding flares of the disease, but I can tell you that had I tried to taper from 12 mg last Oct to 3.5 in January I would have crashed, and probably much sooner than you did!
I do find it interesting that you can't remember how well (or not) you felt between April and October of 2016, because I think many of us can almost pinpoint the moment we realized we felt incredibly much better - in my case I felt better within a few hours, but couldn't quite believe it. The third morning when I got up I realized after a few minutes that I hadn't had to plan how to get out of bed, and was just puttering around in a normal way for the first time in many months!
Dear HeronNS, when I was diagnosed with PMR 13 years ago, it was text book and almost immediately I had the 'Born Again' feeling of total recovery once I had started on 20 mg Prednisolone. Then, I had the typical extreme soreness and pain in shoulders, hips and bum muscles. The relief was miraculous, I shall never forget it. This time is different. The pain/soreness is different, not extreme. My arms and hips don't hurt as before but the markers were high and I had overall fatigue and pain mostly just in my shoulder and ribs on my sides. The crash in January was awful and that is when I found this forum. I didnt know about the 'go slow' or any of the other warnings that I do now. The tests are ongoing but while I await for another diagnosis I still need to reduce the Steroids and struggle with the usual discomfort of reduction, as careful as I am now, it still is a slow guessing game. I know my body was content on 7mgpd. But I can't stay at that dose forever. I've been on 7mg for a month. 6.75 doesn't seem too quick a reduction.......so wait it out? Be patient?
Others with more experience can answer this question, but I've heard that often a second bout of PMR can present completely differently from the first one. Truthfully, I hope I never have to find out from personal experience. 
I haven't heard of anyone else having a second bout of PMR. I'm very interested to know who and what they have experienced.
Why not post the question on a new thread? I think it would be very interesting to hear from people who have experienced this, and they may not see this little exchange.
I don't think there are many on this forum - though I could be wrong. I have "met" 3 people with a second dose of PMR but they are all on the other forums.
But as Heron says, start a new thread and then people may see it - they are unlikely to see this unless they are actively following the thread.
how did u get down on prednisone
Pleae note this thread is six years old.
since writhing this six years ago I have been on steroids for most of the time. Up and down. A year ago last January a different Rheumatologist gave me a new plan and that was to decrease the steroid dose by 1 mg each month. I didn’t have any setbacks and did fine until I was completely off them last August. By October I was aching again. I have other health problems and I think steroids helps that in some small way. I am AGAIN decreasing my dose and my doctor 7.5 for now. I’ve been very fortunate not to have any of the side effects. I believe the Lord is looking after me. The 1 mg a month decrease seemed to work for me. My body just won’t let go of the PMR.
"My body just won’t let go of the PMR" - or more to the point, the PMR won't let go of your body! If you stay at even 1mg long term it is likely it will prevent the build up of the unmanaged inflammation to the level where it causes symptoms again. It is relatively common for patients to get to 1mg, think that the PMR is gone and stop but actually the underlying disease is still active at a very low level and in a few months there is enough stored inflammation to cause symptoms. Prof Dasgupta told us a few years ago that he often keeps patients at 2-3mg long term as it reduces the incidence of relapses. Which I take as a tacit admission that PMR lasts a lot longer than they are willing to admit.
thanks for replying Ive been on prednisone 5 years and cannot get below 7mg once I do I get bad stomach cramps lose 2-3 lbs a day and then I have to up my dosage again this is the third time trying to taper down at 1mg a month and got to 6 and started the cramps and weight loss again I can’t believe what prednisone does to your adrenal glands
Is there any other suggestions to taper down?
I’m sorry to hear you have these symptoms when you taper. It sounds like you need the steroids. I can get quite low with the dosage, even coming off them but then some symptoms come back. I have a blood cancer and some of my symptoms might be from that. The doctors aren’t worried about me being on steroids as they give me some day to day quality of life.
sorry to hear about the cancer I wish you well and thank you again for replying
thank you! I was given 3 years and in May it will be 6 years still alive. It’s not nice knowing you have a terminal illness but I’m more positive these days. My faith has been a bonus.
so I glad that you are still with us god bless you!
I’m 100% certain it is God who still wants me here.
You could try using one of the slowed tapers but do each step more than once AND only do 1/2mg at a time. 1mg per month is actually fairly fast and when it comes to adrenal function the ONLY way is SLOW!!! Unfortunately, it is sometimes difficult to get through to doctors that it isn't slow when it works and you don't end up needing to go back up further than you were at.
I was surprised how well it worked for me last year. Because I have other things going on in my body and maybe not PMR, to stay on a low dose would probably be best for me. Unfortunately I started back on 15mg and now have to slowly decrease the dose. Every doctor has their own idea of reducing. In my case, it isn’t 100% certain I have PMR but the steroids do seem to help overall achyness and Inflammation.
PMRproAmbassador
To be at that dose after a year is pretty good! I know you don't think so! But there are a lot of very jealous people I suspect...
There are no ways of encouraging them other than reducing very very slowly - I don't care what the internet says, it isn't true! The local Head of Medicine says if you go slowly enough almost everyone will manage.
However, if you really get stuck then maybe having a synacthen test to see if they are capable of producing cortisol may be worth asking for. But it really is early days.
Hi PMEpro, been reading throught this thread and have been wanting to ask you for ages, or anyone else reading this who has experience. My question is "If your synachten test is positive, eg AD's not functioning as they should, what happens then. Are you put on a different medication? Sorry if this seems like a stupid question.
Good luck to janil with your reduction. You'ce done well so far, I'm struggling to reduce even 1/2 mg from 10mg present dose and I've had PMR since 2010. Never managed to get below 8mg ever.
There are no stupid questions - just silly answers... I hope this isn't one
If they show they are unable to produce cortisol at all then you are either left on about 5 to 7.5mg pred as a replacement therapy (like thyroxine is used for people whose thyroid isn't producing it) or switched to hydrocortisone which is just synthetic cortisol to all intents and purposes. Its effect doesn't last as long in the body so you have to take 2 or 3 doses a day - and that means you can adjust it better to your own lifestyle. As the case with pred and PMR everyone is different and a bit of tinkering with the dose pattern can help. And hydrocortisone is a corticosteroid so will also work on the PMR pain if necessary.
Some people can produce some but not enough - then you get away with a lower dose of supplemental steroid. Everybody's adrenal glands slow down some as they age - some more than others. It's probably one of the reasons we tend to be less able to deal with stress as we age.
Some doctors like to switch their PMR patients from pred to the equivalent dose of hydrocortisone as it is felt that is a better way of encouraging the adrenal glands to wake up.
YvonneThanks peops! I know I need to be patient. I thought if I went really slow I might manage to decrease even .25 mg. I had hoped there might be a magic solution I hadn't heard of that might encourage Ad Gl to cooperate. They are smart but stuborn little glands aren't they? I appreciate all your help and taking time to comment. Thank you all. xx Maybe this time next week I will have turned a happy corner?!
I asked my Rheumatologist at my appointment last Tuesday about Adrenal function. She said that my own Adrenal glands wouldn't really kick in until I was down to 4 or 5 mgs of Prednisalone. Occasionally they don't in some people and then you are put on a lifetime dose of a different kind of steroid that does nothing for inflammation or pain, doesn't have side effects but replaces the function of Adrenal glands.
Apologies to the scientific amongst us but this is as she explained it to me.
This is helpful, thank you SheffieldJane.
Wouldn't mind if she was correct about it! There is at least one lady on the forum whose PMR is managed with hydrocortisone - which is the usual corticosteroid used for primary adrenal insufficiency! It is short acting - so it means more than one dose per day but it is possible to adjust the doses to fit the patient's lifestyle in adrenal insufficiency. At least one lady on the forum with a/i is on pred to deal with it - so it kills two birds with one stone.
Janll, if there were a''magic solution', PMRpro would know of it, and would've shared it with us all!! You have done well. I am on 3mg Pred, after 12 years!
Hello Janll. I think I was at my worst when on 7mg (especially the fatigue - hells horses that was bad!!) but since dropping to 6mg I actually think I've started to feel a little better!! I'm still fatigued but no where near as bad as I was the last few months. Maybe 6mg has been the trigger for my adrenal gland to come back to life I don't know. My last bloods a few weks back showed all markers within normal ranges. Maybe - just maybe that light at the end of my little tunnel is starting to shine brighter and closer! Hang in there! Patience a while longer and continue to be damn kind to your body!! x
Hello....I am wondering what the symptoms are that indicate the adrenal glands aren't up to speed. I am 4+ yrs. into PMR now working down to 4mgs. for the 3rd. or 4th. try. I have always had to go back up to at least 5mg. because of fatigue, returning upper arm pain and pain in one of my wrists. Is this the adrenal problem? My Rheumatologists discount the wrist pain as having nothing to do with PMR even though it occurs each time. Also the upper arm discomfort comes later in the day so Rheumy's say that is not PMR. Unfortunately I am one with normal markers since the original high ones at diagnosis. So that is another reason the Drs. dismiss the problems as not related to PMR. I am fortunate to have found a new Rheumy that prescribes the Prednisone and allows me to step down as I wish, even though he wonders about the PMR. SO...thank you for reading this, if you have made it all the way through. Again any info about what it means to not have fully functioning adrenals would be appreciated.
Be Well to All !
The usual rheumatology "PMR doesn't affect hands" is it? Wrong - the Leeds group have shown it does. And "PMR is in the morning" - not always, for many of us it is all day and returning discomfort later in the day is usually a sign either that the dose isn't QUITE high enough or that something else is going on - I also get pain in my wrists and upper arm when reducing and it takes a few attempts at the new lower dose before it goes away (sometimes I do the first stage of DSNS several times before the day at the lower dose doesn't cause it). I think it is also compounded by the myofascial pain syndrome problems - tight muscles all over my back.
The fatigue, on the other hand, is probably due to the under-functioning of the adrenal glands. If you stay at the dose it first appears at for some time you should be able to tell. It should improve slowly as your adrenal glands adjust. On the other hand, if they aren't adjusting - the fatigue will increase.
One top PMR/GCA rheumy likes to keep his patients at 5mg for up to 9 months before continuing the reduction and finds that helps to make the rest of the reduction smoother. 5mg is low enough to tickle the adrenal set-up to wake up but enough to protect you from most of the downsides of adrenal insufficiency.
This last message has been so helpful to me PMRpro. I'm copy and pasteing it as I will probably forget it tomorrow. Thanks a lot. Easter Blessings! Jan
Thank you once again PMR pro , you always come through with excellent answers and information. You have helped me again.
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