Hi all, not been on the forum much lately. Mostly too tired trying to juggle work and tapering.
This is a long story and I will try and summarise. I'm currently doing alternate days at 6mg and 5.5mg with the aim of increasing the 5.5mg days slowly. I have really hit a mega fatigue wall with tapering and am finding it very very difficult. No real increase in pain at all. I also get shaky feelings, occasional palpitationsamd.nausea on exertion.
I feel this is adrenal on origin but my consultant thinks it can't be until I am under 5mg. He reckons it has to be something else. He has consented to a raft of blood test however, including a 9am cortisol.
This brings me to my second issue. I currently take coated pred at bedtime. Consultant says I must swap this to morning so that there is 24 hours between taking pred and the blood test.
Firstly, do I really need to change from bedtime to morning or is there any other way? Night time works for me.
Secondly, if I do need to change, what's the best way to do this? Half and half.for.a couple of days and then swap it fully?
I'm just so sick of battling people who won't listen both in my medical team.amd at work!
Thankyou
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Coffeebeans
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Sorry, but your consultant is wrong, for some adrenal issues can start above the 7.5mg dose we often quote...perhaps he meant they cannot be meaningfully tested until you reach 5mg.
If you feel up to it, maybe have a look ath this post - contains further links all in one place - healthunlocked.com/pmrgcauk...
Not sure you need to leave 24 hr period before test, sure other will advise.
But I think probably most people take their Pred in morning, and they obviously have to wait until afterwards to take daily dose, so that does give 24hrs.
Perhaps you could get away with a very small dose the evening before, and then the remainder after the test..
I've read most of those adrenal links. Thank goodness for this site and the PMRGCA Yorkshire group because otherwise we would be struggling!
Dr Mackie did a fabulous presentation for us just before Christmas which covered adrenal issues. I don't think he liked it when I pointed out that his advice seemed to be in conflict with her's. It wasn't subtle of me but I'm wayyyyyy past caring or massaging ego's. That comes with fatigue doesn't it.
A small dose evening before might be worth considering, thank you. It's a three hour round trip so I'll be getting a lift.
Actually your Rheumatologist / consultant sounds pretty good compared to many. The raft of tests etc. The 5 mg of Pred before having a Synacthen test is usual. Above that and it is likely to be inaccurate and show an inadequate adrenal function, basically because yours is switched off. I found this in my own case. Only when I got down to 3 mgs did the tests show a normal response. Taking your coated Pred in the morning will just be a one off for the test. In your shoes I would take it on the night of the same day, once all tests are done, it won’t do any harm and may lead to a more energised next day. Check with your doctor. I have done it with travel etc. Take a look at FAQs on here to see if there is a better taper for you to do, like DorsetLady’s. My guess is that with your job ( I don’t know how you are managing to hold down a job) you are utterly and justifiably exhausted. Are there any reasonable adjustments your employer can make to your job, working pattern, duties etc? This is something you have a legal right to be considered, under the Equalities Act.Many of us on here will empathise with your frustration at the way you do not feel listened to. It might be helpful if you write down exactly what you want from your doctors and separately write down what your employer could do, in partnership with you to make your working life more manageable. Use these documents as crib notes and have meetings or at least zoom or telephone call with each of them.
Do you work full time? Is this absolutely necessary? You must rest/sleep whenever you have a chance. I am afraid nobody can wave a magic wand to get you through this bit. It is very, very hard.
I completely agree that the 5mg is the dose you need to be at for the test, it's was the complete dismissal of fatigue and other symptoms being related to adrenals that rattled my cage.
Tapering wise, the one that has always worked best for me is a straight 1mg drop. The slower tapers always make me feel worse for weeks on end as opposed to the straight drop which is over in a week. I just cannot do 1mg at this dose as you can imagine so I've slowed it down. I may have to slow it down again as you say and will revisit it. 👍.
Work wise, I have a reasonable adjustment in place which is a 15 minute break mid morning and afternoon, and an hours lunch This works out as 32 hours a week (contracted for 37). My new boss is much better at this because his wife has MS so he understands spoon theory etc. Old boss just thought I needed a good night sleep or a few days off. I am the only wage earner in my household therefore I really have to earn. My partner and I live separately with no plans to move in just yet.
Thank you for answering, just as I get the PMR ticking along nicely it's another problem 😂
Bless you Coffeebeans, whatever works for you. Nobody understands the grinding fatigue if they haven’t experienced it. Your new boss is a case in point and a blessing for you in his understanding. That reasonable adjustment sounds to me like what the Factory’s Act laid down for everyone. Maybe it was half an hour for lunch. It would be good if you could take a break when you need one. One of our members, a teacher, was allowed to lie down on the head teacher’s sofa, in his office, so she actually got a little nap. I’ve always thought that was a shining example.
I often reflect back and think I'm sure there were opportunities for me to be more understanding than I was for other people in the past. I will be now.
The consultant is wrong - for some people it can start as early as IRO 10mg, it all depends on how much they are absorbing, can be anything from 50% to 90% of the oral dose. And everyone is different anyway,
And sorry - you can't take the pred within 24 hours of the cortisol test sample being taken, it can interfere with the result. If it is enteric coated you COULD take it a few hours before the blood is taken rather than have to wait until after the blood is taken - e/c isn't into the system at all for about 4 hours. You will have had pred in the system until at least mid morning the previous day so even that only just makes the 24 hours.
This was standard for me until my adrenal function improved which it started to do so around 5mg. I felt worst from 7.5mg to then. My rheumatologist docs were pretty ignorant about adrenal function and the odd one didn’t seem to think there should be a problem. The endocrinologists were different though even they thought a much quicker reduction would be ok. In order to get through a day I told them I wasn’t prepared to reduce faster than 0.5mg introduced slowly over anything from 6-14 weeks. Basically the lower I got the slower I got. You have to keep reducing to wake up the adrenal glands, but you have to be careful not to make yourself ill with an adrenal crisis by over doing it. I could never have worked and I certainly couldn’t cope with alternate day dose change like you’re doing; it made me feel rubbish with the boom and bust that just went on and on. I would however, change to mornings for dosing because you need a nighttime low of cortisol in order to trigger production of it in the early hours. I was a coated Pred evening taker and the Endo said definitely go to morning. I think I gave myself a half dose at the normal time and then full dose next morning or something like that.
I've answered SheffieldJane earlier saying I always preferred the 1mg drop at a time but I know I cannot do that at this level. I will look at going even slower as you outline 👍
I know what you mean. I would drop and ride it out before popping out the other side, job done. Sub 8mg is different because of the adrenal function issue on top of withdrawal. You can make yourself quite sick by dropping too fast on top of over doing it.
Oh ain’t that the truth! I do think that we are not prepared though. The impression I was given by the docs was that once under 10mg it’s plain sailing and I was actually told I would “start to feel human”. I even thought going back to work was on the cards. Some people do manage it but an awful lot don’t it seems, though we have already spent an inordinate amount of time beating ourselves up for not being like that before we find out we are not alone.
You are so right. Dr Mackie did a presentation for the Yorkshire group recently and she shared a slide that was so profound I wished I had seen it at the start of being ill.
It was the Lorenz waterwheel. She said that PMR was like this in that you can apply the same inputs day in and day out and PMR will do it's own thing. We all look for causes (did I drink too much? Eat sugar etc) sometimes you did nothing. It made me feel much more normal, and getting through PMR much like everyone else.
One thing that it is fair to call PMR is chaotic!!! Unfortunately - she is one of a very small and select group of rheumies who realise it isn't as simple as most think! My rheumy is another luckily and so is Longtimer's. A terrific triumvirate.
I know it in my head, I've known it for a long time really and actually was responsible for turning Sarah's notice in that direction. But this current flare is so bad I'm even starting to wonder what it is, maybe not PMR any more. But my rheumy is still happy enough that is what it is.
Been hovering above 15mg since last summer when OH was ill then, Been up to 20mg for a few days recently but it is a mix of the PMR and a scoliosis and myofascial pain syndrome and that has caused severe low back pain that ordinary painkillers didn't even touch. Once I can get out of bed and move a bit it improves, doesn't go away, but getting out of bed was an interesting experience earlier in the week!!!
You have had the most dreadful time recently, yet still made time to help others.
My daughter had scoliosis (since successfully operated on) so I know of the pain you have. Is there anything surgically that could help you?
Hoping you feel better soon and an enormous thank you for helping so many (often bewilded) newbies with their recently diagnosed PMR. You are really needed (and most certainly don't deserve your current situation) and so many people have cause to thank you for all your knowledge and expertise.
I’m so sorry you’re feeling so bad PMRpro 😟 I’d noticed one of two other comments of yours and meant to reply. I do hope you sort something out soon. Do you have any idea what else it might be?
Christian is quite happy it is PMR and some of the stuff I found this afternoon did show how all the back stuff and PMR mix, I don't want it to be anything else - but on the other hand, I'd be glad to see the back of this relapse!! Just all the stress of the last 2 years has finally landed I suspect.
No, I guess you don’t need any further complications! And yes, you’ve certainly had a lot of stress. I hope that with taking a good dose, and treating yourself well, you’ll feel better soon. Sending you every good wish xx
You have been under exceptional stress. It’s like a big wave coming and there’s no way to avoid it, you just get knocked over. I hope this situation improves really soon for you. Xx
Sorry to hear you had a relapse.Hope you get through it real quick.The last two years have been very stressful for you.It does seem to catch up with us.Good luck!!!
The toughest time for me in this whole miserable journey was at 5mg. I stayed on it for almost a year...couldn't reduce 0.5 mg. At 5mg the fatigue was unbearable...I also have to work...and they were understanding at the very beginning, when I was bouncing around on 60mg ...but 2 and a half years later...they didn't want to know...everyone assumes I am of course absolutely fine now. But I am so lucky that I only work from home. The adrenals do seem to wake up a bit over the course of about 6 months to a year. Still have to be VERY careful what demands I make on myself. Fatigue is too weak a word for the experience... I felt I was slipping into death. BUT it does get better. I now work 5 hours in the morning (my best time of day) and another 4 hours late afternoon and evening.
Sending you every good wish for this stage of your recovery.
Yes fatigue is far too weak a word for it. The deathly fatigue?
I'm glad you have work pretty much arranged to suit. It does help. My work is hard to do this with multiple meetings all over. Every day is a battle where i have remind people that's my protected time. I've even had to go to someone's manager because they refused to send me a TEAMS meeting invite because he thought I should be there in person. We live in a very ableist world and I'm tired of it.
I don't have a problem with the word fatigue - it comes in various versions and can be overwhelming. But when people try to tell me "I get tired too " I could feel quite murderous!
I’ve explained it as, “ it must be what having narcolepsy is like”. No control. I’m awake, maybe watching tv and the next thing I know, it’s an hour later.
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