Thank God I have a leason Nurse batting for me! He called me in to have Cortisol levels checked as I have been steadily lowering my Prednisolone under direction from Ophthalmology, and Steroids shut down the Adrenal system reducing Cortisol levels. Reading posts on this website made me wary when getting to lower doses as the kickback from reducing can be worse so I slowed it down when going from 4mg to 3mg as my legs felt like jelly for a couple of weeks. But I was quite taken aback when told that there was a risk of Adrenal crisis when Cortisol levels get too low and this can be fatal and my tests revealed it to be low. I have now been started on Hydrocortisone 10mg morne and 5mg nocte as well as my reduced Prednisolone and am being referred to Endocrinology. I wasn't aware of that risk and as I have said before to others sometimes you are your own care co-ordinator.
Surprised in a bad way.: Thank God I have a leason... - PMRGCAuk
Surprised in a bad way.
It is discussed a LOT on the forum - mostly with regard to the fatigue which is more sort of a part of secondary Addison's and comes on slowly but I have often warned about the risk of an adrenal crisis in the right (or wrong) situation such as accident or illness or mental stress. That is the main reason for carrying a steroid card or wearing a warning bracelet to show you are a longterm corticosteroid patient so healthcare professionals are warned. They have even introduced a new card in the UK though because HCPs seemed woefully uninformed about the risk.
Technically an adrenal crisis could happen at pretty much any moderate to low dose if the emergency experienced were bad enough. I have a friend with PMR who would have wee dwams (Scots for a funny turn) even at 10mg. Her husband was trained to watch out for her talking rubbish or being away with the fairies and force a extra dose of pred down her!
PS - do you know how low the cortisol level was?
No, I mean that level of Transparency is an unusual occurrence in my experience and even the dosage I was told on the phone call from an Ophthalmologist, 15 mg morne and 5mg nocte is different from the prescription I was handed from the Hospital 10mg morne and 5mg nocte. Who do you trust? Your bloody self.
P.S. I have learnt a lot from this Forum but was not aware that under certain circumstances low Cortisol levels can lead to an Adrenal crisis that can be fatal, no wonder I was asked to come into the Hospital and pick up the Hydrocortisone the same day. Forgive me but I lost sight in one eye due to what I perceive as "Diagnostic Shibboleths."
The only time it might be fatal is if you were on a higher dose and had been taking it for a long time and you stopped cold. Going down in say 1mgs should be fine. Although the adrenals might complain a bit having to come back from holiday. I should not worry about it being fatal.
Piglette I started on 60mg of Prednisolone that has been jigging around for nearly three years until they finally gave up on their diagnostic shibboleth that I was too young to have GCA and a rheumatologist put me on Tocilizumab, I fought for that, I feel I have had to fight for what is patently obvious to me and why I am very wary.
Fair enough, but I don’t think you need worry. It is people who are on 15mg for a few months then decide to stop dead that are really asking for problems.
Thanks for the reassurance👍
I’ve been going down in 0.25mg steps over a period of 5 weeks once I got to 3mg/day. Tomorrow will begin week 1 of the taper schedule to 2.25mg. I never understood the rush. I have had zero symptoms of PMR or Adrenal deficiency. I have an upcoming routine appointment with my Rheumy to see if I should get my cortisol levels checked. At my last appointment he indicated if I’m not experiencing any side affects from my current activities (2 days ago I walked long inclined belt conveyor, really taxed my hamstring muscles. No symptoms of abnormality) he saw no need.
I really believe slow and lower steps is the secret.
Just a word of warning: a lady on the forum felt fine at 2mg pred, no fatigue, functioning well. But her doctor automatically did a synacthen test - and she had no reserve function at all. They upped t pred dose a bit and she has the rescue injections at home - just in case.
I’ll send my Rheumy a message asking whether he’ll want the Synacthen or other test performed this year before we meet later in November which if no surprises I’ll be starting a taper toward 2mg.
Regarding the lady in the forum to whom you refer do you know how she was tapering? Did she do 10 percent drops beginning at 10mg and was it via a DSNS methodology? Also, how many years was she on pred and average dose?
Remember, I’ve been literally following the 10 percent rule. Was at 4.5mg in February 2021 @ 0.5mg drops / 5-7 wks until I got to 3.0mg and began 0.25mg drops. Obviously, that’s the smallest decrease I can do.
Everything I’ve been reading indicates spreading out the reduction with low steps increases the probability of the Adrenals awakening, so to speak.
As you may recall I had severe tingling and some pain in my hands. Carpal tunnel release solved that issue. My right hand fingers feel (don’t look) swollen but my dexterity is fine. My left hand feels the same, but, my middle finger is prone to the trigger finger, late evening sometimes bends and hurts if I try to straighten it (depending on day’s activity). Soaking my hand in warm water and taking Ibuprofen alleviates the condition. As I taper the Pred this does seem to worsen, which makes sense.
When I say zero symptoms I literally mean no symptoms of PMR. After walking that long, steep incline that had my hamstring muscles aching while climbing I though I would trigger a flare for sure. Nada. Within minutes of finishing that inspection/walk the muscle fatigue was gone. Felt great the rest of the day and same the next morning. Also manually dug up a rather large plant. No issues.
Thanks for the heads up, I really hope it’s not booby trapping me.
It is ages ago but she had been at 2mg for some time. And you are quite right - reducing slowly increases the likelihood of adrenal function returning. Just nothing is 100% certain.
Hope it all continues as it is though!!
It also helps if the medical people involved in your triage or care know. When I fell last year and hurt my knee they asked at triage, of course, about medications, and I told them. I was at the time tapering from .5 to zero (those were the days!) and apparently this was of no concern to them. I suppose they didn't understand the implications of having been on pred for several years by then. It wasn't until later I understood why I felt so extremely unwell in myself, that it wasn't just shock from the trauma of the fall, but after a few hours more likely my body's inability to manufacture enough cortisol to deal with the stress not only of the injury but of the bad (because very lengthy) experience of the emergency department. If, heaven forfend, I'm in a similar position ever again I will be sure to emphasize this a lot more when questioned!
Heron, I have read some of your posts before and you come across as being articulate and cogent, never assume others are and that the much vaunted electronic joining up of notes precludes the recipients ability to read and assimilate them.
It's actually quite hard to be emphatic and articulate when you are sitting there wondering if you've broken a bone, and expecting to be home in about four hours. Of course at the time I didn't know it would take 5 hours before a doctor looked at me and another six before I got home (with no broken bones but shaky and very cranky). Probably a few cups of tea would have served as a fine substitute for a few mgs of pred! I did ask for tea (not allowed) but didn't think of pred.
I know, I know, I know. I went into A+E with visual disturbance, I was at the finishing end of Chemo, but this was nothing like was told to expect. I sat with drunks for hours until I was seen and they Kept asking "have you had headaches" to which I responded no but a feeling of pressure in the head. I went in at 1:30 am and was finally seen by an Ophthalmologist at 9:00 who went off to ask advice, went for a CT scan "a stroke" was ruled out even a Dr in A+E said this isn't a stroke and Ophthalmology asked for another scan, my sight was disappearing from my left eye and as I am sure you can understand I was getting panicky the right was next. Well nearly 24 hours later I was put on IV steroids, my sight gone in the left. Their constant defence was "You didn't say you had headaches" poor, very poor. SO always push, challenge with knowledge as their diagnostic Shibboleths defend them from incompetence.
😮
Oh I am so sad to hear about your sight loss….. when it was so avoidable. 😱
I can't turn back the clock, i can't do anything but compartmentalise it and put it away as the rest of my life is in the future.
Like my situation , when reading on here i should have a card. On my very rare visit to the GP i asked for a card .The Dr rang the nurse and it took 3 of them to find me one as they were <Tucked> away in a spare office in a box ! Made me wonder if the box had even been opened .
What are the symptoms of a looming adrenal crisis when on a low dose. Seems funny that many GPs bang on about reducing so quickly when this can happen. Don’t they know ?
Quite scary in fact
Judging by the fact it was deemed necessary to create a new steroid card BECAUSE of poor awareness of adrenal problems in long term corticosteroid patients on the part of healthcare professional - it would seem not!!
endocrinology.org/endocrino...
says that National Patient Safety Alert was raised - there is no excuse ...
It would be a factor if you were ill/in an accident/under severe stress or any sort and the adrenals couldn't produce enough cortisol in response - so being in that sort of situation and feeling unwell should be enough to seek advice.
"Acute adrenal crisis is a medical emergency caused by a lack of cortisol. Patients may experience lightheadedness or dizziness, weakness, sweating, abdominal pain, nausea and vomiting, or even loss of consciousness."
They so rarely deal with patients on long term steroids that it probably doesn't occur to them - and that has brought about the introduction of the new card. Though without education that won't achieve a lot.
How low was low? Mine weren’t special at all at 4mg but the Endocrinologist said to keep reducing slowly because the lack of steroid was the only way of triggering the body to make its own. It certainly is a balance between triggering function and exceeding the capability of that function.
I don't know, but my beef is that I was on an Ophthalmologist guided reduction programme and at no point told that in lower doses this becomes a risk, it was the Nurse, yes the Nurse that chased me up and got the tests done and it was enough of a concern that I am now on Hydrocortisone and told to get them from the hospital THAT SAME DAY. Jesus.
Thanks for your response, how long were you on Prednisolone for?
3.5 years with a handful of times when I had extreme stress and my apparently happily functioning adrenal response couldn’t cope. For me the risk times are when stress is prolonged and extreme. My latest was travelling to St Lucia on Monday. Need 1mg and a day of total inactivity. Debatably I needed more but I went for trying with less and then go on a shut down.
My Rheumatologists didn’t tell me and it was up to me to go to my GP and flag up my concern once I got to low doses. It was this site that made me aware of this issue. Bless her heart she booked a Synacthen for months in the future when I should be below 5mg. The low result of that automatically won me a ticket to the Edno. There are docs who don’t think it is an issue and ascribe to the theory that they kick in at the right time. I did my own reductions because I felt I could read my body better than someone else, though Endocrinologist input was valuable in advising me that I had to keep going and being able to measure progress. However, if one keeps supplementing the adrenal’s cortisol level feedback part will keep thinking it doesn’t need to register a deficit. It needs someone to guide you thought
I am glad things have settled for you and yes you do have to chase things and fight which is very hard when you suffer from an illness like this, well done.
I don't know Snazzy and try to control my irritation at these things, potentially fatal, being treated as an "After thought" by those whom I'm supposed to invest trust in, thank god I have that leason Nurse who is on the ball.
Indeed it can be fatal and it can creep up on you and just feel like you’ve got a bug. Prescribers should know that but.
Well it hasn't got either of us yet has it? So you cuddle up for the Winter and take care.
Yes, my gp said exactly that when I mentioned adrenal insuffiency which I ticked all the boxes for a few weeks ago. This is an interesting post! Not sure now whether I can feel safe on 2.5mgm after reading all this.
Dear Dad, you keep going as will I, ultimately there are few things in life we actually wish for that we get, like an afternoon in a pub with Billy Connolly or Joan Collins (Think of the stories she could tell) but ill health is guaranteed and I object to having been a life long tax payer and having to do so much for myself.
never heard of a liaison nurse before...can I get one please
I would like to help, but it would be unfair to name him the poor bloke would have a Tsunami. I am a retired nurse (mental health) so am used to asking awkward, difficult questions, try that.
was tongue in cheek AM. at 56 you've got a long way to go to be ancient. I've never had an issue with asking difficult questions. Mind you unpicking some of the answers can give me problems. 
Jargonised, or the use of "Neologisms" a way of hiding knowledge and creating a hierarchy of supremacy, secrecy, cults and religions do this we don't all speak Latin after all do we Cycli? I have Sat in ENT appointments with an audience of people around me and the Consultant made a comment to them "that's a proper" (I can't remember what technical term he used for the gaggle that was there) and cut him short and asked him as his patient what that meant, well he looked a bit sheepish and explained it. Captain Bringdown, that's me.👍
good for you. have done the same many times. They all do it and the terminology can always be explained in plain english. If they can't explain it they don't know and should say so. Some things are uncertain and we can share knowledge and maybe find answers but a consultation should be just that. A collaborative meeting between the "expert" and the patient. Sometimes you do wonder.
Thanks Cycli, I worked as a Community mental health nurse for many years and can tell you, be sceptical, the house of Windsor cannot continue to transfer it's insanity onto the wider public by telling everyone they might be mentally ill, Jesus every Narcissist in the neighbourhood will be on the phone, glad I'm retired and possibly likely to be cancelled from here.🤨
I believe it may have something to do with the breeding.
Possibly, but the pair of us will get invited to leave if we go off on such subjects, but question your care providers as you do, you are the recipient and always give that kind of trust carefully.👌
I always find out before any such trust just how competent the individual is. I took control of my welfare early on and don't let anyone mess with it unless they can explain what and why they are proposing to do whatever .
Good, your early years have become your shield.👍
I once used the term “MO” in a team talk where the age ranged from 25-45 and not one of them understood, I was shocked tbh. At a recent physio appointment I used the expression “lead boot” to describe how my ankle felt and had to explain that too. I had a standard education and do not consider myself a know-all but thought these terms were fairly standard .
verbal communication has attenuated with the advent of television and mobile phones texting. The ability to describe something requires a vocabulary and that comes from a diverse range of experience and the desire to impart what you see in a commonly used communication medium. This shorthand text speak they use is context and linguistically inadequate to communicate properly and has permeated their everyday life. With consultants hiding behind terminology and trying to explain symptoms it's no wonder people get the wrong or o information.
That and the inability to spell means that sometimes they use the wrong word but it fits in the context, As a scientist it infuriates me - no wonder things blow up ... Details, details ...
Completely agree.
I think that is why sites like this are so important, you do get knowledge from other sufferers that helps and it also has a professional input that can stop "Witchery and diverse potencies of malodorous origin" take hold.👍
You should have the phone number of the delivery service when you were put on Tocilizumab, mine is Lloyds and they usually give me a notification by text on my mobile phone but were getting late so I phoned them and organised it. Dad I know older people don't always get mobile phones or have computers and I am not assuming that you don't but you should not be rationing this medication yourself without medical advice, GET ON THE PHONE AND BOTHER THEM.
Dad2Cue is in the USA - Lloyds don't deliver there 
Thanks, but I think he will get the general idea.
Oh man I am sorry to hear that, I thought things were just tough in the UK, but it looks like Truck Drivers can't be found across the entire globe, I mean where have all of them gone to ?North Korea? better deal? I have been informed you are in the USA and I don't know what social support systems you are entitled too so can't advise but if you have a community support leader, anyone get them on the case, Dad I wish you well and hope things get better for you for Xmas.
I think it is a feature of our generation! There is a vast number of people who have recently retired or are about to retire - in everything, healthcare, driving, the service sector and the trades. And no replacements because training places were cut without thinking about the fact that "baby boomers" were getting older. They have only had about 55 years to get used to the idea!!!
Good point, also the worlds population is likely to peak around 2050 and then decline according to what I have read. China is approaching a demographic crisis, worse than Europe's (particularly Germany) because of it's one child policy, now reversed by the all seeing eye of the CCP but is becoming very elderly and all male as Chinese couples preferred a male only child under the Statist Communist one child only policy, China has shown it's hand too soon and started to Unite the Five Eyes democracies closer. Anyway, this is a health forum so I will shut up.
We'll be frizzling by 2050 ...
Royal Dutch Shell and the University of Pennsylvania have developed Carbon scrubbing Trees that are highly effective at taking carbon out of the atmosphere. Britain is in a prime position to store this as it has been mined for resources since antiquity and the North Sea is now full of underground chambers that can be Carbon storage sites. You never hear about this from the BBC do you? No.
Nothing will work unless we stop spewing fossil carbon into the atmosphere and stop cutting down our trees. Everything else is just bandaids to make us feel good about our efforts and delay the inevitable. We don't have time for the technologies to take over and undo the damage we've been causing for centuries, but mostly post WW2.Unfortunately we've already unleashed Arctic methane.
Be more optimistic, the high technology solutions are easily deployable and Carbon storage is a business already underway and Britain has immense capacity for due to the empty oil wells under the North sea. China is a busted property flush and just last year was planning to open 25 coal mines, Well if we can do without the garbage that they produce on the cheap for us then that may stop some of that. This might be a hard Christmas reminding people you cant always have what you want when you want it and if our egregiously narcissistic population swallow that lesson at last then maybe the West will start to recover.
There is hope then? 🌍
I’m not bothering to taper anything anymore on this basis, pass the gin please 🤪
No, cos that’s good news. BBC specialise in disaster reporting.
But will we be able to get a face to face appointment with a GP 🧐
Who knows! There was an article on Sky News yesterday I think - with Dr David Lloyd stating the blindingly obvious, saying that f2f is necessary for some things although telephone triage and some telephone prescribing will continue. Above all though, there needs to be education teaching people totake responsibility - I see people at the GP for things I wouldn't dream of even calling them about!! The problem is that when you do take responsibility as long as you can and THEN need their input you are still relegated to their waiting game. By the time I ask for help I have exhausted all other options open to me but that doesn't register.
Ditto
We can still get a f2f as long as you jump through all the hoops euphemistically called "triage". Personally I prefer a telephone consultation if I really don't want or need a f2f. I'm much more assertive on the telephone and thanks to this forum I am armed with probably more knowledge than the average general quack, so tend to get what I want.
Love that term ‘general quack’
It was on TV yesterday, there has been a 4% drop in new borns year on year for the last few years in the UK, they are worried about who will look after the elderly in years to come....lets hope it`s a better system that what we have now!
My reading of cortisol was 92, very low....the Endocrine dept won`t prescribe HC, and no emergency injections....my Rheumatologist is disgusted, he said it`s a postcode lottery!....and have to be alert for an emergency...I have a card and bracelet....
Do you know what your cortisol reading was?
No I haven't been told that but I am still around so that's a bonus.
It certainly is....Suppose I like to know what I'm dealing with....improvement or not, having another test in December, so hoping it has risen....fingers crossed....
I continue to take quite a high dosage of Methotrexate, that , apparently was the next drug that the Ophthalmologist was going to start reducing when Prednisolone was stopped, FAT CHANCE, now I am also on Hydrocortisone. Forgive my bitterness but some of the care pathways I have been put on seem to have been devised by Dr.. Micawber or Dr.. Seuss .
Quite agree, have been there, and met the same....
that's before PMS and GCA took control. Now I listen to them and ADAPT.
Stay sceptical, even of yourself, otherwise illness may come to identify you.
never
Spoken like a Spartan.
I’m Spartacus .....
you're trouble I know that much
Did you ever see that joke reflecting modern politics that was adapted from the scene in the film where they all stand one by one saying "I'm Spartacus" ? In the joke adaptation they all shout "He's Spartacus", great, what a wit.
😂
I feel like we are even more these days ! Lets see if the Government forcing the DRs back to their surgeries will help , its about time ! I know that at least one of my ailments has got worse since only being able to have a phone app !! how can they possible review your situation over the phone without seeing the awful side affects you get from being to low on Pred. Not to mention some people can struggle with mental health issues when tapering to this amount of Pred ! Hope you improve soon, best wishes Viv 🌷
Thankyou.
Thank you piglets for that image, “my adrenals are on holiday and don’t want to get back to work”. I think mine are protesting. I’m down to five mg now but have been fatigued for months. How long should I wait?i
I've been very ill with adrenal problems a couple of times. The last time was when I was on depo-medrone injections a few years ago - an ignorant doctor made me have too long a gap between injections. I remember feeling absolutely dreadful, like I was going to die. Dizzyness, low BP on standing, nausea, overwhelming fatigue, inability to get warm, sudden rapid weight loss. Nobody warned me either, I had to figure out what was wrong myself, with the help of this forum
such a wonderful resource tangocharlie. Keeps me sane.
Just want to thank all for your excellent witty, informative and elegantly vituperative comments! First time I have laughed today. Have a good weekend!
It's the humanising of what is a truly cruel disease and we must all try. Have some fun .
and then they will tell you it is all in the mind
That is a very good point.
Did you ever take MXT for your inflammatory arthritis?
Please see above.
I’ve heard many people get this sick feeling. In some cases, the rheumatologist will prescribe injections instead of pills. I started my first dose last week when my rheumatologist diagnosed inflammatory arthritis. I’m keeping my fingers crossed. She also had me increase from 3 mg of prednisone to 7 mg. She’s really listening to me and my pain. Someone, finally!
D2C ""morning sickness" . I wasn't pregnant and never have been but that was how I described it." WHY on earth would you think to use these as comparatives. There's no way you could relate to them as a bloke.
Sick in the morning I would have thought It was the allusion you could have even thought you could relate to childbirth and the related sickness rather amused and dumbfounded me. That's some empathy you must possess D2C
you've been on a long and painful trip D2C. From reading it seems as if you have over experimented with your meds and it has had a long term effect. Must be difficult to sort out what did what. Sounds like your bid for empathy backfired this time. You said you had a good relationship with all your consultants/professionals as they were family friends one way or another and neighbors. If so that's nice but unusual and not what most of us face, so we can't be so free and easy and the timing of meetings/ftf or phone consultations is sporadic and uncertain. Sounds to me like your body finally rejected the drug and has had too much. Hope something else works.
So basically because you had uveitis the opthalmologist treated you from day 1 no need for any other medic. You never had advice about dose or taper and had to figure that out by yourself. Problems were overseen re. possible GCA by opthalmologist and only when PMR rears its head do you have problems that multiply. Did uveitis come from Inflammatory arthritis? Presumably you had diagnosis from Dr. for that. Why didn't you have advice or was it that you just thought they didn't know what they were talking about so why bother with them. It is difficult for all of us to make up our minds whether to trust in their judgement with this disease because there are so many different takes on it and how we each react. This is the bit that worries me "I had ample supplies of leftover prednisone so I "expanded prednisone's use" to treat all kinds of things -- I self medicated but prednisone was all I ever took. I do give prednisone credit for not being addicted to narcotics."
I really wouldn't even contemplate that having seen what it did to my father 40 years ago. I'm on a different path and hope to be off it but not sure when. I would prefer to keep it as simple as possible and work out how much my own body can adapt and heal as I reduce.
sad for you D2C. no fun dealing with that. Any long term stuff from pred or have you managed that. Think I have had a charmed life by comparison
how are you still alive D2C? I honestly don't think I could contemplate how I would cope with that load. I guess like this disease you just go on and decide at the time. Your health system is different and I guess that informs your approach and howyou interact with medics. More commercial and pro-active.
respect D2C. I'm glad you are doing ok at the moment. I guess we each face whatever comes and adjust. It's certainly an interesting ride if somewhat challenging. I'm going to try my turbo today and see where I am at. A bit nervous to discover the worst but I need a base line and it is the only way. Daughter drove up to help wife select groups for tupping and taken steers to market before driving home. all good. It's just not quite the way I had planned the next 10 years or so. We'll have to see what the future brings. Finally moved my machines up here for my woodworking so machine shop next project after renovating and reroofing the old cow byre into her weaving studio.
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