Adrenal Insufficiency due to long term use of Prednisolone
Posted , 14 users are following.
I require some advise please.
I have had PMR for approximately 9 years now and have not been able to reduce Pred. lower than 7mg for the last 7 years (up and down like a yoyo). A few months ago my Consultant suggested that I have a Synatchen test to see if my Adrenal Glands were working. Results next day stated that they were not and that I would have to stay on Pred. for the rest of my life, I am 69 years and hoping for many more years. I will be seeing my Consultant on Monday and am wondering if any of you out there have the same problem, how you have dealt with it and is there anything I should be asking my Consultant that I don't know about. I have looked in detail on line and have a list but your experience would be very helpful. Thanks in advance Quizgirl x
0 likes, 24 replies
constance.de Quiz_Girl
Posted
I too have been told I would probably be on pred for the rest of my life (6 1/2 years PMR - 4mg at the moment). As I am 79 that shouldn't be too long (!!!) so why worry? I'll concentrate on things I CAN change or do.
EileenH Quiz_Girl
Posted
I have had PMR for 14 years and counting and cannot get off pred either. I have been down to 4mg which was fine and 3.5mg which was not so I returned to 5mg - only to have a flare a few months later that sent me back to 15mg. I again got to 8mg with no problems - but 7mg was too far. Now I have had yet another flare and am back at 15mg to function without pain and severe atrial fibrillation - which seems to be associated with the flare (it was probably caused by the autoimmune part of PMR).
Of course your adrenal glands aren't working if you are on 7mg - the results of a synacthen test is not reliable until you are down to at least 5mg and lower is better before doing the test. The pred you are taking signals there is corticosteroid present, no more is required so the response is severely blunted. There are people who have managed to get off pred after longer than 9 years - not many probably but I do know of a couple. It may still happen so continuing to try to reduce 1/2mg at a time is still a good idea I think.
However - my view is it doesn't matter as long as I can function reasonably well. It's similar to needing insulin when your pancreas is shot or thyroxine (probably a better comparison) when your thyroid doesn't play the game. You do probably need to get information about emergency requirements should you have a crisis and know the signs of one and how to make family and friends aware. Maybe acquire a medialert bracelet or the equivalent.
Quiz_Girl EileenH
Posted
Thanks for the advice, I will be armed and ready for my appointment on Monday.
daisylazy Quiz_Girl
Posted
Hi Quiz_girl i have the same problem .Dont think there is much we can do about it .I had managed to taper to 3mg and my endo suggested i stay there if i felt ok.However i have increased to five on account of the extreme fatigue .Apart from that go on as usual whatever that is .By the way i am 74 .I also wear a medi alert bracelet in case of emergency .You would need a boost of steroids if an emergency arose.Hope this is of use to you .Eileen was a great help in explaining it .
lynda62707 daisylazy
Posted
All the aforementioned info is INVALUABLE!!!
I had NO idea that after "Years" of struggling, you all were STILL either trying to get off or trying to resign yourselves to the side effects if prednisone!
so, is this my future??
I'm a very young 67 ( even tho at the moment, I feel....shhh, "old")😷.
ahhh...Good Times!
Anhaga lynda62707
Posted
Lynda, MOST people will eventually get off pred. People who are not having difficulties and have a good support network around them are likely not using the forum so you are getting a picture from people who may have had problems or are perhaps still quite early on in their journey. I've been taking pred for over three years, and for the last two years my dose has mostly been down around the 1.5 - 2 mg level, with two flares caused by my trying to get to 1. The reason I'm on this forum is because I don't have much of a support network in my life. I have friends, but it's not like we drop in and see each other every day. Sometimes a month or more will pass between visits or getting together for lunch or coffee. I value the companionship on line, although I also recognize it's not really enough, so I've been doing what I can to widen my social network. The forum gives me invaluable information about how to deal with tapering and avoiding flares, or controlling them if they happen. But I don't have issues with my dose of pred. I don't need any other medications and have only the creeping decrepitude of old age to trouble me, so far, other than PMR and osteoarthritis. I'm 71 now, I suppose I was just shy of my 67th birthday when I developed PMR. I thought I was young then. Now I don't. It's okay to grieve the loss of youth, but the alternative, to die young, wasn't appealing either, and mostly I'm accepting of my lot. I do work very hard to look after myself and keep as healthy as I can.
MOST people will eventually get off pred. And if you don't it isn't the end of the world. Just part of life experience and someday you may be able to help other people who are struggling, because you'll have great insight.
lynda62707 Anhaga
Posted
Dear Anhaga, your post brought tears to my eyes (literally).
I'm so glad you're on this forum and to "know" you!
Sometimes this is the best place to go, not only for info, but for "friendship" as well. After all, we've. all got at LEAST one thing in common (pmr/pred), but I suspect FAR more than just that!......😘
EileenH lynda62707
Posted
You also have to be grateful for pred and that it is available to us at all even if it doesn't cure - both my grandfather and a great aunt almost certainly had PMR and lived for many years with it without any pain relief at all. My grandfather continued working on his small holding until he developed peripheral vascular disease - partly as the long term consequences of a war wound, partly poorly managed diabetes and possibly partly the vasculitis that wasn't managed because pred was still in its early days in the 1950s. But for both of them what we call PMR was regarded as rheumaticks and part of getting old so you put up with it and got on with things.
But as Anhaga says, 95% of patients will be off pred within probably 10 years - 19% of them in a year, 58% in 5 years. The vast majority will be at a low dose of pred in 18 months, a dose that is less than the body makes as cortisol anyway so doesn't cause problems.
Acceptance that this is the way things are going to be for a while and using pred wisely so it provides a fair degree of normality means that you can stop thinking about the bad bits and - like our grandparents generation - get on with it. Neither PMR or GCA shortens life - they aren't cancer or worse.
I'm here because this forum was the source of the existing charities for PMR and GCa and we have brought it forward so that more research and provision exists - even if it sometimes doesn't feel like it. Ten years ago there was nothing except this then very small forum and one in Canada that has since disappeared. It is the nature of the beast - we aren't young when we become ill and some of the founders of the charities are now around 80. There will be change, that is inevitable but there are far more younger people out there now to take over. If they are willing.
daisylazy EileenH
Posted
So true Eileen we are so fortunate to have pred and my experience has been good .I have had no ill effects from pred and as you said i hope the younger generation will take on the forum with such dedication and willingness of sharing of knowledge because without this forum the pmr journey would be a very lonely and scary one .
lynda62707 EileenH
Posted
thank you for all your thoughtful input!
I feel a bit more enlightened.
that's just one of the reasons I love this forum!
Vicki200252 Quiz_Girl
Posted
I was diagnosed with pmr about 3 months ago after a very long process which started around February this year.
The process started because my left leg was swollen and inflamed so , 3 lots of antibiotics later and numerous blood tests, MRI , ultrasounds you name it I HAD IT. I was starting to think I was going mad, I was getting weaker and more pain until eventually I couldn't get out of bed without help or even turn over in bed.
Then finally at one of my many trips to the doctor she must of had a thought and ordered another blood test which indicated I had pmr and results showed inflamation was sky high.
I started pres on 60mg, then gradually told to take it down to 7 mg and all this within 4 weeks.
7mg was to low and I was flaring up as I was trying to come down to 5, I was continually at the docs when I was between 10 mg and 5mg , nearly every day until I told her myself I needed to go up again, she seemed annoyed that I wasn't cured .
She started me again on 25mg , which had to be decreased every 3 days by 5mg until Iwas on 10 mg which is now. I still have all symptoms but not as bad as originally.
I have doc appointment MONDAY , so lets see what happens.
She had previously told me to take TRAMADOL and PANADOL OSTEO with the lower dosage plus tumeric tablets,fish oil tablets, GLUCOSAMINE with condrointren, caltrate, plus I have Atrial fibrilliation now and have to take eliquis and minax. I feel like a walking pill bottle.
I was wondering should I have been sent to see a specialist once the cause was found.
I have learn't a lot from everbody's posts, thank you.
lynda62707 Vicki200252
Posted
YIKES....I'm no expert at all, but it seems to me you were initially put on s "fairly" high dosage of prednisone, and then advised to taper WAY too quickly....that IS one thing I know tons about....none of it good!
I don't think you said, are you seeing a rheumatologist?
Again, in my humble experience, I suggest that's your best bet!
My primary doc wanted nothing to do with this, and immediately referred me to a rheumy....
I doubt I've been of much help, but keep posting! I'm sure you'll learn alot soon!
Take Care!!
EileenH Vicki200252
Posted
You don't necessarily need a specialist, that depends on your medical system and you don't say where you are, but you do need someone who has the slightest idea what PMR is in the first place and how to manage it. Your current doctor obviously doesn't have a clue and is unwilling to look it up.
Glucosamine and chondroitin won't help PMR which doesn't attack and damage joints even if there is some involvement of joints early on in some patients, nor will tramadol or panadol (paracetamol) help the pain. 60mg is far too high a starting dose for PMR, it exposes you to high dose pred unnecessarily, and you need a lower dose of pred for YEARS - it is a chronic disorder and the pred is only managing the inflammation, it cures nothing. That's why you use lower doses and over longer periods of time.
In the UK a good GP will manage a patient perfectly well providing they know the basics and then listen to the patient's reports of how they are faring. Any doctor who assumes their version is right and yours is not will fail to help and should be avoided like the plague. In the US most PCPs seem unwilling to take responsibility - and often it takes several tries to find a rheumatologist who knows what they are doing, They may think they know the theory - but their practical approach often is poor.
Vicki200252 EileenH
Posted
thank you for your advice, I really appreciate it.
I live in SYDNEY
Vicki200252 lynda62707
Posted
I haven't seen a rume at all nor has my doc suggested it.
I feel I need to see one.
Harrie4 Vicki200252
Posted
I presented with exactly the same symptoms as you describe. Fortunately, my GP here in Canada (an Aussie btw) knew when his first dx didnt help that it might well be PMR. And he's smart enough to verify current best practises. Once inflammatory levels are verified and match symptoms, the protocol is to prescribe Prednisone @ 15 mg. If there is relief w/in approx 12 hours the likelihood is high that a diagnosis of PMR is valid. Once the symptoms are controlled then a gradual taper with an optional rheumatology consult is put in place.
Your doc should really know this, i'm sorry to say. If she is resistant to your input you may well need to find another doctor.
Best of luck with your appointment. Pls let us know how it turns out.
EileenH Vicki200252
Posted
I do know there is one very good rheumy in Sydney - but I have no idea who, I just know someone saw one there when her doctors in Canberra were useless. I think the Sydney person wasn't in agreement she had "just" PMR and started her on tocilizumabwhich made a massive difference.
If this is the primary who is making such a mess of PMR management you need to see a rheumy. Whatever the primary thinks. Or, if it is simpler, a different primary would be a good start.
Vicki200252 EileenH
Posted
I agree.
thank you
EileenH
EileenH Harrie4
Posted
Just a note to say that SOME may respond to 15mg in 12 hours - but that isn't a given and some need a higher dose or longer to get the result. There really do appear to be different versions of PMR and they don;t all obey the same rules - just to make it even more complicated!
These are the most recent Recommendations - which say "The lowest effective dose in the range 12.5-25mg/day"
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf