I have done very well in terms of PMR flares / stiffness for a long time now. Other health issues not so much
I have managed to slowly taper and have been on 5.5mg for at least two months - a little nervous to push it further.
Anyway this week since 01/03 - I started alternating 5.5mg and 5mg. Probably since Thursday I have become a bit stiff - neck, hips and upper right arm. Today 07/03 - way more stiff. Should I go a bit longer to see if it’s withdrawal or shall I go back to 5.5mg and wait until it gets warmer?
Or should I perhaps try 5.5 alternating with 5.25? None of it will be too accurate as I cut them myself as best I can.
Thanks as usual.
Written by
Slosh
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What's the hurry? You aren't heading relentlessly to zero - you are looking for the lowest dose that gives the same good result as the starting dose did. Had the stiffness been on the first day you tried the lower dose I might have said it could be withdrawal - especially if it got less over time. It isn't, it is getting worse. That suggests it is just a bit too low.
Have you ever considered using one of the slowed tapers we talk about?
You challenge your body with the new dose just one day at a time and then have several days old dose for a few times - I found my body accepted the lower dose without complaint after meeting it 3 or 4 times. The lower you get, the slower you need to go but it doesn't always mean cutting the tablets into smaller and small bits.
Thanks PMRpro - I suppose I want to get as low as I can because of all the other issues that I think are related to being on Pred. The Osteoporosis, teeth, impact on gut microbiome and all the consequent issues I’ve had. Although I realise that inflammation can also cause these issues.
I think I will go back to 5.5 for a few days and then follow the very slow method that you suggest.
By rushing you run the risk of going backwards- too low a dose inevitably will lead to a flare in symptoms and then the choice is continue to suffer as you did before, because the inflammation will build up to that level again, or take more pred to sort it out, which will initially need more than you were on pre-flare, and may be more difficult to achieve good control, Thus achieving exactly the opposite ...
Thanks PMRpro - notes and good point. I took 6mg today.
Another question - I only eat for the first time and a cooked meal at 10:30am.
Took the the 6mg Pred out and put it on the kitchen counter - plated up my meal and went to sit on a chair near the window with lovely sun. Forgot to take the Pred. By 12:30 felt a little odd anyway got up to get a glass of water and felt quite dizzy, weak and a bit shaky - saw the Pred and took it right away.
Could this indicate a bit of adrenal insufficiency - because I’ve been in slightly lower dose and then forgot to take today’s dose until just a little while ago?
More that your body hasn't caught up yet I suspect - a real adrenal insufficiency takes time to really build up unless you are in an emergency situation. But the same thing, just the degree is different.
From bitter experience I have discovered if you have any problems STOP reducing and stick at the point where you last felt comfortable, if you try and fight it PMR will win.
I am just experiencing the same thing at 5.5 mg. I tried a slower taper and it was OK at first but over the last two or three days I have noticed stiffness, particularly in the thighs and buttocks - like the muscles will not relax - and I remember this is how it started. I am also exhausted and achey and not feeling at all good. I went up to 6mg yesterday and today I have increased to 10mg - a 4.5mg increase in the hope that I will catch it and quickly be able to reduce to 6mg again. This worked last time with a flare so fingers crossed. Like Slosh, and everyone else probably, I would like to be free of steroids but it is a slow process, especially once in the lower doses so it seems. If I can get back to 6mg I shall stay there and then, when it feels right, start one of the really slow tapers and see if that works. Fingers crossed.
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