After two years I'm down to 3mg p d and now I'm truly struggling! Rheumy says my adrenal glands have shut down so I need a cortisol test and probable hydrocortisone therapy before any further tapering.
It really is a bugger, and depressing, I had begun to think I'd soon be of the pred for good - home and dry. Instead it's all kicking off again. Yuk!
I am sorry that this blow has come just when you'd successfully reduced to 3 mg. I would certainly welcome the test - we can be extremely fatigued for a year or so after PMR goes into remission, so it may not even be the case,,that your Adrenal glands have packed in. Even if you have to stay on 3 mgs the side effects would be negligible.
My own Rheumy made the hydrocortisone therapy sound simple and routine, like the Thyroxine I have to take because my Thyroid gland can't produce it. I am quite sceptical about doctors saying things are easy mind you. Anyway PontesburySapper chin up, onward and upward, you'll cope I am sure. Good luck!
Hello, So sorry you have hit the buffers. I'm a looong way to the giddy heights (lows?) of your dose but am seeing that this condition on paper looks like a simple one when in fact it isn't. I can see how after so long with our nemesis and saviour we hope to be rid one day, like the Holy Grail. I hope you just need more time and you get there. In the meantime all I can do I shout "Bugger" very loud on your behalf.
Is that the synacthen test? Would be interested to hear how that goes, I have asked my GP for one but he seems reluctant.
Are you at a low dose (at or below about 5mg) and feeling excessively fatigued? If the answer to either is no - it probably isn't necessary. The best test as to whether the adrenals are producing cortisol is being able to lower the dose slowly and being OK.
All the synacthen test tells you is whether the adrenal glands are able produce cortisol when prodded hard. It doesn't tell you if the rest of the process is functioning properly.
Same here podo - in fact my GP told me there was no test which could distinguish between the pred affect and the adrenals kicking back in. After six years I am still on 5mgs of pred. with my arms looking like they've been in a torture chamber. Now spreading to my face and my legs. All I get is shrugs from the rheumy and sympathy from my GP.
My blood readings are still a bit up so the rheumy wants me to go back up to six mgs and to drop in again next January.
Sorry to sound so dissatified but I am really fed up with it now. I AM over the magical age of 75, of course.
I wish you well, podo.
Hi,
Yes it is a real bugger, but unfortunately as lots of us know, these illnesses have a mind of their own, and just as we think things are going swimmingly a bl**dy great shark hoves into view!
I felt absolute rubbish between 6mg to 3mg tapers, so appreciate how you feel. Luckily my adrenals did eventually spark back into action. Hopefully the test will confirm if yours CAN, and even if they can't, as SJ says a very low dose of Pred is not such a big deal really. Yes, it would be nice to be off it completely, but many of us are on some sort of tablet for the foreseeable future - it's a fact of life as your body ages! Just accept for what it is!
Hiya DorsetLady,
You must spend hours helping out folk on this site, and very sage advice it is.
I once worked for 5 years in Libya, and learnt 'Patience'. I am still trying to be a patient patient, but my patience is running out!
We have need of our resident poet.
Thanks for your interest
Resident Poet - how about this one..?
"There was a young man from Nantucket who always drank soup from a bucket.
But after spilling hot broth all over his tie, he gave up and shouted Oh......... "
(Better not continue with this one or I'll be in BIG TROUBLE with the Aunties here....) 
Try to keep smiling on the Journey 
MB 
Thanks for the big smile.
All part of the service...
Do you mean Aunties or antis??
This auntie "read" the word he so delicately omitted...
PS - you do know there is a scientific paper that shows that pain is better tolerated when you swear...
Oh good, I shouldn't have any pain any when according to that then🤔
Me neither! Trouble is - OH is such a prissy ...
Could never say that about mine. He was that soldier after all - although he did get uptight if anyone else swore in my company!
Suppose that made him a gentleman! Jury could be out on that though!
Sometimes DL There are insufficient curse words to see me through the day!!😂🤦♀️
Ha, well-spotted Auntie PMRpro
Yep, I've read that ******* paper too 
Keep on with the funnies it brightens up one of those days!!!
Ok, but it'll cost you shella...
Worth every penny Mark Benny 🤦♀️
Lovely!
Love it makes you laugh and that missing word is mighty powerful used in the right context
Yep Zanthy, it doesn't need to be said - only thought!
Keeps me out of mischief ....ummm 🤔
Careful what you wish for DL...
Greetings PontesburySapper
Sorry to hear that you've hit the wall with your pred reduction. I'm guessing you're 'struggling' with the usual symptoms (stiffness, pain, fatigue?). Yes, it is frustrating / depressing when you think you're out of the woods - both with PMR and the preds..
I'm not a medic so I can't give an expert opinion. But from what I've learned here, and if it helps:
First, getting down to such a low dose (3mgpd) relatively quickly is pretty good going by most standards with PMR. 2 years to 'get off' the preds / for PMR to abate seems to be a minimum timescale, and there's some research out there to suggest that only minority of PMR patients achieve this. You'll see that many here are still on higher dosages of preds for much longer..
As for your Rheumy's suggestion that your adrenals have 'shut down', my understanding is that this is normal due to the preds (synthetic cortisol) taking over - it doesn't necessarily mean that they won't wake up again, it's usually more a question of when.
Your Rheumy seems to have the right idea - 'steady the physiological 'ship' and stay at 3mgpd and / or 'up' the dosage slightly if you're struggling. As the experts here say, it's not a Race to Zero with the preds, and PMR has a mind / mysterious timescale of its own. The last bit of the tapering journey (usually < 7.5 mgpd +/-, the body's natural physiological dose) is known to be the most difficult because this is when those sleepy adrenals are being 'nudged' (or maybe bullied - if reducing by too much and / or too quickly?) into waking up - and they can protest loudly!
You might see from my most recent post here that I had a similar experience after 6 months or so of being 'stuck' at 6-ish mgpd - and, like you, getting quite despondent / considering asking my GP for a Synacthen test to establish what was going on (or not..) in the Adrenal Department.
Then, a sudden and dramatic, almost overnight 'turnaround' in all symptoms. Pain / stiffness / fatigue levels almost disappeared, and continuing 3 weeks later. That said, I'm sticking at 5mgpd for a while regardless of feeling a lot better so as not to push the adrenals too hard.
My conclusion? Hang on in there and try to be patient / not jump to conclusions. You seem to be doing well, all considered.
MB
Well I shouldn't really grumble, because during the 2 years, I had 3 complete relapses, and went back to 40mg each time. (Rocket fuel for old men!) So I suppose I have reduced fairly quickly. And yes, Myalgia, headaches, glands around the neck and all the rest.
However, it is good to have support and understanding from the many good folk on this forum, thank you one and all!
It really is from 7mg that you have to do very slowly - and as I often tell people, a particularly good PMR rheumy in the south of England likes his patients to stick at 5mg for anything up to 9 months (needless to say that does engender a degree of dismay) but it does seem to make the rest of the journey simpler. If you are at 3mg and still upright I'd suspect your adrenals are producing some cortisol - it may not yet be enough or reliable under stress.
Hmm upright, now there's a good expression, I'm on my feet so to speak but very wobbly. As always you are absolutely right, I was pretty well ok until 6, since then I've really struggled to get down using DSNS to 3, so I will await the test. Meanwhile I note that this thread had turned into a fun list. I was only having a whinge, the way you do, and you have all cheered me up.
Thanks everyone
i am so in the same club, I shouldn't say it but you cheered me up to know I'm not alone, as I too (yr 3) got down to 4 mgs and have really struggled to get to 3.5 . Have flare so upped back to 10 for 5 days now back to 4 and am staying there for a month at least . Like you felt v demoralised but some on this fantastic site make me ashamed to be whinny about it. My Rhumy say to come and see him in a month and I wil then l ask about test for adrenals .
It s heartening to know others have and do experience similar hiccups .
Thanks resident poet for making me laugh. And thanks too for regular supporters including Dorsetlady. PMR pro and peridot .Good wishes to all. Wispa
Thanks Wispa123
'Resident Poet'... er, what... me..? One of YOU LOT called me the site's Resident Comedian a while back. Looks like I've got 2 jobs here then?
The Boy stood on the burning deck... (silly b****r)
MB
Watch out folks, Mark's been on the wine again
Only kidding Mark, nice to see you back in form
Pete
'Again' Pete..? Mediterranean Diet and all that.. - the French and Greeks seem to do ok on it. That's my theory and I'm sticking to it (hic) ;-/
As for being in form, are you diplomatically saying that I've got form..?
MB
p.s.
Many thanks Pete.
Actually, I'll never stray far from YOU LOT - even if feeling Astonishingly (I use the word in all seriousness) better, so suddenly, and hopefully for the long term. But, as always, 'We'll see..'.
Why..? Because, over the last 2 - often tough - years, You Lot have given, and still give ME great entertainment value too, with your witty banter and cheeky replies to my often Bonkers posts / replies to others here (haven't you got better things to do?).
In appreciation of this, I would like to adopt you ALL as my surrogate family and invite you to a slap-up dinner at an up-market restaurant (e.g. the ASDA Super Store Cafe in WSM UK?) to celebrate our friendship.
(Note to Self: hang on a minute, with a surname like 'Benjamin', and knowing a little about my Jewish ancestry, better limit the costs to 'Ten quid-a-head and everyone to cover their own travel expenses..').
Ok, that's it. Opening the vino (I never start before 19.00 hours - promise), and plotting and planning for The Book.
Be warned...
MB
Ha Mark, now I know you’ve lost, only thought it once, but now you’ve proved it.
'Ten quid-a-head, that won’t buy us champagne. Anyway I think it should be TESCO to keep it in the family so to speak. As we all know the name came from Jack Cohen who bought a shipment of tea from Thomas Edward Stockwell and used the initial letters from that company and the first two letters of his Jewish name Cohen
Ok history lesson over
Now onto more important stuff.
I have deduced that the “feeling astonishingly better” claim must be due to the red wine you are consuming So I now have a completely plausible excuse to inform my wife that the way to remission from PMR is to consume vast quantities of red wine with my Mediterranean diet.
You are completely exonerated my dear friend.
Pete
Phew Pete, that's ok then! I know the T.E.S.CO story well!
TESCO / ASDA / SAINSBURY'S or wherever for a get-together - it's a nice thought isn't it? Just a matter of the logistics here in the UK, but anything is possible...
Have a good night - and hoping you 'survive' the next couple of days of this blistering heat. All change on Thurs apparently...
MB
Nice thought, yes Mark it is.
I was just wondering if we might get into trouble by chatting and joking on this forum? I however find it very therapeutic and takes my mind off of this nasty thing called PMR. Light relief for some of us who are more isolated I think. I suppose eventually some one will give us a thick ear, I hope it's not one of the Aunties
Pete
I hope 'chat' is allowed, and I quote "I, however find it very therapeutic and takes my mind off of this nasty thing called PMR". I started this thread with little more than a whinge really, struggling to cope. It turned out to become a very long thread with a combination of very good advice, comfort and humour. Surely that is what the forum is for, at least I hope so, because although my condition hasn't improved today, I am much more cheerful. So, Hey Ho - let's Go!
I agree PontesburySapper, I am not sure how I for one would have managed without the support and knowledge provided by this forum.
Pete
That's right PontesburySapper. This is a social forum after all, even if usually addressing the more serious side of our various health issues.
Many here have said / say that a bit of Fun helps through the tough bits, and I plead Guilty as Charged on this count at least!
MB
I've wondered about this Pete, but a bit of harmless banter seems to go down well with quite a few here - including the Aunties (who shall be nameless) AND the 'odd' Administrator too ;-).
I'm sure that if we crossed any red lines according to the forum rules, we'd get a quiet tap on the shoulder from someone. And, as usual, I'd blame YOU LOT of course...
The nice thing is, everyone has a sense of appropriateness when joining in with the fun - even if a bit mischievous at times - and of course it helps that many of us know each other quite well by now!
MB
Mark you have such a way with words, after all it is part of your 'official job'. Thanks for your comments.
oh "You are AWFULL, but I LIKE You...shove !
I must stop saying that.
I must stop saying that
I must stop saying that, wife thinks I'm childish, I can't help it if I'm in my dotage
Pete
Nice to have the job of Official Joker / Poet here Pete! Well, the schoolboy humour works for me at least - keeps us young at heart?
On another forum it was deliberately set up so we have a Chatterbox section as well as a load of more serious headings. There is also a section for photos if anyone feels inclined. To be honest - even the serious questions get asked on Chatterbox...
I have been ticked off a couple of times for levity on yet another forum! It very much depends on the person - one got very uppity about being "interrupted and my thread hijacked by YOUR post" and sent a private message to the culprit. Not me or anyone here I hasten to add.
You have to look at it this way I think: if you didn't laugh you would be all too likely to cry...
I noticed that PMRpro, it's very good. And... a 'certain' person (?) re-posted one of my rare, less Bonkers / more serious posts there - I stumbled across it whilst exploring for other reasons. Whoever it was, many thanks ;-).
As for levity, I'm really pleased that mine here (if you can call it that) seems to go down well with quite a few of YOU LOT. Either that or you're all just humouring me (excuse the pun), it has been known before.
Only once did I ever receive a (sadly, very sarcastic and insulting) response to one of my posts here from a user who clearly didn't want to, or wasn't up to joining in with the collective fun. Either way, I wish that user well and haven't heard from them since. Maybe for the best...
It reminds me of the old saying 'You can't please all of the people......' etc.
I agree with your last comment totally. Funnily enough (OMG, another inadvertent pun), I think I read somewhere that, in the Brain's emotional *(survival?) programming, Tears of Laughter and Sadness are close companions.
Food for thought...?
MB
What's the REAL reason for seeing a rheumatologist?
Think it's Adrenals. Advice re exercise needed.
It's not working.
Can this be real?
It's back what supplements are ok?
