8mths on and down to 5mg for past 2mths, had relapse in first month going from 40mg to 30mg over 10days, then cut to 15mg (relapse by 2nd day, think that's too big a drop, went up to 20mg and managed fine. Tried to drop to 4mg recently, experienced pain, back up to 5mg and stable. A drop of 1mg doesn't seem a big deal, guess it's 20% of very little dose. I suspect getting any lower will depend on immune system completely back to normal balanced function. Have recently heard black beans an excellent ant-inflammatory + a lot of other benefits, google it. I changed my diet cutting out foods/drinks that cause inflammation, lost weight, added anti inflammation foods. Think it's worth taking charge of our healing.
Give it a go
Liz
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LizJaymal
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Interesting reading, but I would say that if you managed to reduce as quickly as you say then your illness - you don't say GCA or PMR - but from starting dose would guess GCA was not as severe as many on here.
1mg does make a lot of difference to some- especially at lower doses - when as you say it's a 20% reduction from previous dose - no more than 10% is usual recommendation.
Black beans may well help, but just be aware they won't cure your illness, there is no cure as such. It's a matter of letting it run its course, which as you know can be very variable.
Good luck, and keep us informed of your progress - you may be one of the lucky ones who get through with little problem.
It seems compared to many others I am so far lucky to be on a low dose within 8/9 months and so far no GCA, I don't presume others have not taken a similar approach and recognise for some it's a long journey, I am enjoying black bean soup which is more than I can say for some other concoctions. I would agree in the light of my experience 10% drop is enough, difficult to get crunching pills. My side effects have been a swift deterioration of eye sight and cataract forming, hair thinning substantially, I am taking hair/skin/nails supplement (understand results slow), had a moon face on higher doses. Side effects seem difficult to counter by taking supplements, so many of them it's an overload on the liver!!! I believe we are all unique and it seems to me that our own gut instinct/intuition is probably most accurate re what works best for us, can only share my experience which may or may not be useful to others.
Top experts have said tapering reductions should never be more than 10% of the current dose. Tapering in titrating the dose is NOT the same as simply reducing to zero after a short course of steroids.
If you have PMR and if your "lowest dose that manages the inflammation" is going to be about 5mg - then that also accounts for the relative ease of your reduction. You can go fast if you are well above your management dose, haven't been on pred for long and are someone who doesn't react badly to changes in dose. Some people don't.
Do you honestly think that many of us haven't tried a dietary approach? Perhaps some of us who have avoided/added particular foods have done better - but there are a lot who tried everything they could think of who still struggled greatly.
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