On August 20th I reduced my prednisolone from 2mg to 1mg. Around September 16th had bad pain in my back and joints. Bending my knees is very painful. Visited hospital on 19th for an echocardiogram and found it difficult to move to the left on the bed for the examination and had to get a taxi home instead of walking. I have changed the blood thinner I was on for atrial fibrillation from Edoxaban to Apixaban in the meantime. Would this have made a difference ? My question is, how long should it take for the body to react to a lower dose ? Should I go back up to 2mg ? I would like to increase by a half mg, but it’s not possible with the tablets I have. I’m disappointed as I had hoped to dispense with prednisolone, because of the long term side effects.
If somebody could share their experiences it would be helpful. Thank you.
ps. Could it be a flare ?
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bluepuddy1
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Honestly, I'd had gone back to 2mg when you first had a return of pains. . so try that now. Hopefully it will be enough to get things back under control. If not then you may need to follow the flare protocol
A drop of 1mg at such low doses is too much for many - if you did it because you only have 1mg EC or GR tablets - then using a very slow tapering plan is a good idea.
In fact it's a good idea anyway, and if you have plain tablets then cut them into halve [or even quarters] to help you get to zero more successfully.
Thank you. I was using a slow tapering regime and this worked very well, my mistake was only allowing a month before I reduced to 1mg, just the wrong time I suppose, as my husband said it was a 50% drop. As I can’t halve my tablets, could I eventually alternate a 2mg tablet with a 1mg tablet, for about 3 months and then try the 1mg again ?
You can use the slower tapering pattern.. but repeat each stage/week therefore elongating the length it takes to get fully from 2mg to 1mg. Doesn’t matter how many times you repeat each stage or how long it takes… if it works it works..
Have just looked at the tapering document. From my flare at 1mg, I had increased to 3ml. The pain is not really better. Could I as originally advised for flares go up to 6ml and then reduce after 7-14 days back to 2mg ? Or should I wait a few more days on 3ml to see if the pains get better ?
Dear Dorset lady. I thought I had posted yesterday.. but can’t find it! I’ve been on 1.5 mgs since June so thought I could try one of your suggestions .. 1 mg twice a week to start with. ( my pills are so tiny I can’t get 1.25.. just crumble!) Today I have felt so awful. No flare as such… just no energy.. no appetite.. slightly sick .. can’t function at all. Dare I try this again on Wednesday. ?!?
As it’s the following day it’s probably steroid withdrawal - see how you are tomorrow and the next few days.
Maybe just introduce the new dose once a week -then you have 6 days to recover. Try that for a couple of weeks and see how you are… .
But if it makes you feel really awful then just stick to 1.5mg. To be honest it’s such a small dose and quality of life is more important than getting to zero and feeling rubbish.
You really have to decide which you want more - to be able to function on a low dose or get off pred and feel less than optimal. As we get older, the likelihood of the adrenals getting back to par gets less.
No, thank you for your answer, the time gap is rather puzzling, it happened about 3 weeks nearly 4 weeks after I reduced. I should increase, I suppose that is the sensible answer, but having reduced to 1mg and envisaging an end to polymyalgia in the future, it’s rather disappointing.
I understand, but better to have a decent quality of life than be a zero-champion. I know some rheumy's think that is success....what good is zero if we are unwell? Zero pred only served me a massive GCA flare. Take heart...be well.💞
A reduction at any level should aim to be 10% of the current dose. By the time you get to 5mg that is already only 1/2mg and as you get lower, that 1/2mg becomes a higher and higher percentage. We have slowed tapers that help mitigate for that - as DL has explained you can repeat each stage as many times as you like.
And every month is too often at these low levels - the lower, the slower. Your adrenal glands have to catch up and that can be a long slow process. It does sound as if 2mg is plenty. 1mg is on the low side and there was some left-over inflammation each day that has built up over the few weeks to a level that is now causing symptoms.
As I have tapered down to 1mg Pred. my journey has had me questioning whether it is my age and normal aches and pains or a flare. The symptoms of PMR that I experienced are forever burned in my memory so when I feel pain somewhere else, I figure it has to be a new symptom. I have dreaded having to go back up in dosage so my taper has been really, REALLY slow. I am currently doing 1/2 mg once a week In a couple weeks I'll up it to twice a week, etc. Thank heavens my tablets have a line and break easily. Definitely ask you doc if you can change brands.
To lessen the pain I have jumped from 1mg to 3mg. I have some tablets over at 2.5mg, which would enable me to reduce eventually by half a tablet and then to 2mg. I still have some pain, so will wait and see if things go back to normal. If there is an improvement I will have a word with the doctor re: changing the tablets as I would have to taper from 2mg to 1mg otherwise, too much of a drop.
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