I've been reading some recent posts about the various experiences of tapering and especially when getting to sub 7mg levels. This is where I am struggling too. I was feeling pretty good on 7mg after tapering from the initial 15mg started in November 2019. I then moved to 6.5 (splitting pills and doses) and after a few hiccups (shoulder pain/feeling odd and tired and nearly giving in to the recommended leap up by 5mg to settle things) it settled down and I felt good again. Similarly with 6mg and this lasted for about three weeks until some more shoulder pain and other symptoms which I found to be similar to the list under adrenal insufficiency. So - I 'gave in' and returned to my safe dose of 7mg and have now settled back to feeling OK.
HOWEVER I read a reply to another person's questions on this which said something along the lines that you need to challenge the adrenal glands to get them going. Did I correctly understand this to mean that perhaps I shouldn't have 'given in' but should have toughed it out a bit longer?? I'd appreciate comments on this. I'm keen to reduce the prednisolone. I have an autoimmune blood disorder for which progress is (according to the haematologists) being masked by what they see as a too high dose of steroids.
Thank you!
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Jackie_boy
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No hurry - you have to be able to recognise what is probably PMR and what not. Try for 6mg again once you feel good, but preferably using one of the slowed tapers we bang on about and only 1/2mg at a time if you can. By going really slowly at this point you reduce the potential adrenal effects to some extent and that makes it a bit easier to decide what is what.
Sorry pardon to the haematologist - I know they want to see you at a lower dose - but that isn't going to happen until both the PMR and the adrenal function is willing. Or he can have you suffering a flare of the PMR and/or risking an adrenal crisis. Which is a bit irresponsible.
Well it’s not so much as giving in! .....it’s trying to work out if the symptoms are PMR related or adrenals stuttering.
If it’s mainly fatigue it may well be the adrenals....I found I suffered from random bouts of fatigue when I was dropping from 6mg down to 3mg...using my slow taper only 0.5mg a time....but I just kept going.
If that’s what it is, it’s really a matter of time and patience really.. ..however if more PMR like then it might not be the right time to go below 7mg...one day it will be, but not now.
I know that doesn’t help your other issues, but if your PMR needs 7mg it needs 7mg.
After 4 weeks on 5mg I have begun to feel tired, aching body and oh so emotional. Two weeks ago I was feeling really good and looking forward to spring etc.
Someone has suggested that the added stress (garden builders gutting garden) has depleted my 'bucket' of cortisol. Can this be the case?
Very likely - you have little reserve adrenal function and if you are much involved in the garden project it might just be too much. Or - also possible - is that while 6mg was plenty, 5mg is just a smidgeon too little and it is finally catching up with you. I'd try alternating 5 and 6 if you didn't try from 5.5 to 5. 1/2mg at a time is plenty now - and a very slow taper approach helps too.
It is jolly difficult working out what is withdrawal, what is poor adrenal function and what is autoimmune shenanigans. One you have to stop reducing for and one you wait for and one you have to keep going down for. I didn’t have PMR but I do have a haematological condition (possibly autoimmune) that makes me feel tired and achey with possible infections. The cyclical thing was a easier to tease out because it is cyclical. The withdrawal lasted a couple of weeks (higher dose was a few days) and the adrenal bit was a fluey achey thing with the list you are familiar with. I got it particularly in the shoulders and upper back. Going back up to 7mg has given you some clues I hope. Just guessing but I’d assume that if you felt instantly better, it may have been adrenal. Think about the pain and ask yourself did it really feel like PMR? The odd and tired bit with adrenal sluggishness can either be intermittent or stay all the time like it did with me. When you go back up in dose your adrenal axis (all the parts of the process) will just slow down again because the Pred is doing it’s job. The ‘challenge’ is to keep the dose just low enough to trigger the adrenal function but not too low that your body can’t cope. This can mean feeling rubbish but you have to keep challenging it. Like DL I just kept going but very slowly. So, 0.5mg drops but introduced, not just dropped, over weeks helped me. I didn’t feel great for quite a few months but some people find it easier. If you have a high stress event like an upset, fall, injury you might need to do a day or so with a bit more to avoid a crisis.
It’s interesting. We talk a lot about the physical but I think we should view stressful events as another demand in the poor old body and be prepared to adjust or maintain a dose without tapering for a while.
I think Snazzy, DL and I do all go on about the role of emotional and psychological stress in both flares and adrenal function problems at various stages of PMR/GCA journeys
And in my case I have to add in some arthritis in my spine and low thyroid that I'm being treated for when it comes to figuring out cause of symptoms. All I can do is refer to my original PMR symptoms when it comes to figuring out if I am PMRing or adrenalling, or if I should blame my low thyroid. LOL If the pain isn't in my shoulders and upper arms or in my hips and thighs, then I figure the pain must be from the arthritis. The tiredness is another matter. Still tired most of the time. I recently learned, on this site I think, that Pred. can skew your thyroid blood work. So it's really difficult to know what is what. I just tapered from 8.5 to 8mg Pred. yesterday. Taking it slow and so far so good. My naturopath doc said my cortisol is on the low side too. Not sure how that plays into things.
The low cortisol is a possible contributor to the fatigue - and should improve as your pred dose goes down and your adrenal function improves. But the ability of the adrenals to respond to higher demand than the baseline is important too.
It’s certainly a game isn’t it? Your natural cortisol will be low because the artificial cortisol, the Pred, means your body always thinks it’s got more than enough. The trouble with being under 10 is that at some point you need a bit more natural cortisol but the adrenal function hasn’t always caught on. This no-man’s-land down to 5mg (very variable between people ) can be a real trial for tiredness. The only way to get the adrenals to putout more cortisol of your own is by triggering the alarm bells by persistently taking the Pred away. The vague rubbishness is par for the course but as you’re finding out, if you’ve other issues it can be a wild stab in the dark to know what is the problem or if it’s all of them. It’s not an easy time!
It truly helps a lot to get feed back about this and know I'm not the only one confused by this ailment. I know my body pretty well and am learning even more on my journey through PMR. Just wish I was younger and not having it steal my ability to function well in my late years. 🤪 Aging is NOT for the faint of heart.
Indeed. My father-in-law is still fuming that in order to keep ticking over he needs to put in so much more effort than he thinks should have to when he deserves a rest in life.
Believe me - I find it easier now than I did when I was 52 and it stopped me. At 68 it seems slightly more acceptable - especially since I have doctors who don't nag me to get off pred ...
In my experience it takes a while for my adrenals to catch up with my dose drop and it's good to sit it out for a bit. I am at 2.5mg now and have been dropping by 0.5mg through the physiological adrenals reawakening bit. I can feel off for a full two weeks before things settle down - feeling weird, shaky, twinges etc. A couple of times I have had my doubts and that I had gone too low but sat it out, for two months in one case, and felt great at the end of that. Meanwhile you see others have the experience that they 'left it too long and had a full blown flare'. It is so much a personal learning curve and experimenting what works for you. But the adrenals re-awakening stage, say 7mg downwards, is definitely a bit different to the bit before that for me.
I think this is the one point where a bit of yoyo-ing with the dose can be informational - you have to be able to recognise something that happens every time you change the dose. Someone reduces by 0.1mg at a time - if only that was easier!
This probably won't be of much help, but for what is worth, here is my experience. When I started tapering below 9mg at one half mg a drop, I found it very difficult. I was fatigued and suffered aches and pains. However, I continued and found that at each drop it became a little easier. I think my adrenals were being forced to "wake up" I do not look for the discomfit/pain when I wake up. I push them back and go about making coffee and breakfast. As the day goes on I do feel better, even if only emotionally. I think it is particularly difficult in this time of isolation. Good Luck !
This probably won't help at all.............but when I went into remission and remembered to carry the Blue Steroid warning card for 1 year when you stop taking pred.
It took me over a year to not encounter fatigue, especially when I overdid it or ran in a stressful situation, to get back to not running into fatigue.Those adrenals glands do wake up but it take time to get become normal and we have aged at the same time.
I would add that there is a difference in the TIMING of the two possible things. If you are feeling much worse a day or two after a drop in dose, it is likely to be adrenal insufficiency causing it. Tough it out.
If you start feeling worse but it comes on slowly about a week after dropping your dose, it is more likely to be due to dropping your pred too far. That is a flair. Our experts have gone over this many times but for someone in your situation, I think this needs repeated.
Everything useful that I know about PMR was learned on this forum! Gotta love these people!
Hi I just dropped from 6 mg to 5 and feeling completely drained with no energy and it’s very hard to decide if I stay on it and see what happens or go back up it’s very frustrating dealing with this on our own with no real medical help from a rheumatologist 😡
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