I have have been on pred for 2 years following my pmr diagnosis. I have reduced down to 1mg every other day. I am very stiff and achy but find i can walk it off most days to a level I can cope with. My main problem I am finding is overwhelming fatigue. The rheumatoid consultant when I saw him on 30th Sept. said keep taking one pred every other day then stop at the end of Oct. I said to him I know I will be in pain and he said it’s slocumb syndrome where the pred removal mimics the pmr. I can’t be in the pain I was in ( and have recently) been in and I know I will be!!
What would you wonderful people do? I really do feel that there is no point talking to people in the medical profession sometimes as they truly do not understand the pains we suffer. Thank you x
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Osteoqueen
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At the end of only two years the chances are the PMR is still rumbling away in the background and barely on the leash with your minute dose of 1 mg. If you reduce still further and then stop, the dragon will be free to attack again.
I do know what I'm talking about. Over two years ago I got to 1 mg, having been on pred for slightly over two years. My doctor suggested I use up my tablets, stop and see what happened. I attempted to carry on tapering using the dead slow method as I did have a good supply of tablets. I tried twice, my mistake. Ended up after messing about for a couple of months back at 7 briefly, and subsequently at between 2-2.5 for the next two years. Now I'm in my fifth year of pred, sixth year of PMR, and am tapering again using the dead slow taper by doing each step twice, only .5 at a time. I have got back down to 1 mg. So far all is well. Believe me I am not going to be rushing this time. If PMR is in remission which is possible given the elapse of more time then I will still step very cautiously into lower dosage, carrying on taking SIX months to reduce if all goes well to zero, still tapering by .5 at a time. My final taper will be from .5 mg to zero. Or maybe simply staying here at 1 if that seems necessary.
You will know the difference between withdrawal and active PMR because withdrawal gradually improves, but PMR when the dose is too low will gradually get worse again.
The fact that you have overwhelming fatigue indicates that your adrenal glands have not yet caught up and they need more time. Even if you didn't have the aches I'd suggest you might do better for the next little while by being at a slightly higher dose, not too high, you want the adrenals to still keep on recovering, and then attempting an extremely slow taper again.
What was the last dose where you still felt well with the symptoms mostly under control? I'm afraid a period of fatigue is likely to happen to most of us and the recovery can be slow, demanding a lot of patience. If it doesn't ease then tests need to be run to make sure the adrenals can actually start making cortisol again.
Thank you so much for your detailed response. We are made to believe that pred is the devil and we must be rid of it as quickly as possible!!
I honestly can’t remember what level I was on when I felt truly well. Most days for me now is trying to struggle through the pain and get on as best as possible.
I should consider I think increasing temporarily and not be so focussed on getting off pred which is my overriding goal.
The moderate doses of pred used for PMR are not nearly as damaging as many doctors still believe, most side effects can be mangaged perfectly well, and the quality of life pred gives us is beyond price. Can you see a different more reasonable doctor, or is your current one educable? Because your treatment at the moment is no treatment at all.
I actually do have a box of 5mg tablets left would you think going back to 5mg for a while would be the way to go? Sorry to ask so many questions of you.
First, and maybe flippant answer would be - get a Rheumy who understands PMR!
Looking at previous post of 10months ago you were struggling at 7mg - no doubt then we advised you had been tapering too quickly - how have you been between then and now? My guess would be reducing relentlessly as per Rheumy’s instructions without really ever getting the PMR back under control.
As HeronNS says 2 years in your PMR is still active - despite what some doctors think - so you have obviously gone below the level you actually need - add in reducing too quickly for the adrenals to start working again - and you have a double whammy.
As suggested go back to at least the level you last felt good at - if you can’t remember - then at least 5mg . Get yourself stabilised then reduce at roughly 0.5mg per month and probably good to use a slow taper such as this - helps both find the level you need for PMR and nudges the adrenals into working -
interesting. They suggest that "steroid withdrawal syndrome" may be due to increased IL-6 production:
"Recent data have focused on the inflammatory cytokines tumor necrosis factor α, interleukin-1, and interleukin-6. These cytokines are secreted at inflammatory sites in tandem and play a crucial role in the inflammatory and wound-healing processes by causing increased concentrations of glucocorticoids in the plasma. These cytokines are known to activate the hypothalamus-pituitary-adrenal axis via stimulation of the CRH neuron. Interestingly, studies have shown that glucocorticoids inhibit the release of these cytokines. It has been postulated that the fall in cortisol levels upon withdrawal leads to increased interleukin-6 and, to a lesser extent, those of tumor necrosis factor α and interleukin-1β, which may lead to steroid withdrawal symptoms."
Since IL-6 is the cytokine implicated in PMR and GCA - I'm blowed if I can see how he can tell the difference - after 2 years the PMR is likely to still be lurking and you previous posts suggest that.
If it were me, I'd discuss it with my GP and ask if they will supply the pred for the (hopefully) last stages and then I'd use the DSNS approach
using no pred as the new dose first to go to 1/2mg per day (rather than 1mg on alternate days) and then extend the number of days between days you take 1/2mg.
But I'm not convinced by his argument at all and I think you have reduced too far already - see Heron and DL's responses.
You are all so helpful. Thank you very much indeed. I will start back at 5mg tomorrow for one month then reduce 0.5mg per month. I have an appointment at the end of Jan with my consultant at the hospital although he is next to useless. Thanks again. Xx
I must admit if I had been told by my doctor to stop taking pred at the end of October when I was still in pain I would ignore them and tell them so!! I suppose slocumb syndrome can be caused by steroid reduction, but it sounds much more like the adrenal glands are putting up a bit of a fight being asked to start working again, however who knows. As the others say if you can up the dose a little bit for a while and see if you can get an improvement.
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