Prednisone reduction : Been reducing ok from 15 mg... - PMRGCAuk

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Prednisone reduction

Seal49 profile image
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Been reducing ok from 15 mg down to 8 Using a slow reduction about 1 mg prednisone a month. Started 7.5 mg November 1st and after 5 days could start my aches getting worse waking up and later at night. Plan on going back to 8.0 mg for awhile. Am I in that critical dose that gets hard to get pass. Should my adrenal glands be starting to kick in?

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Seal49 profile image
Seal49
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Yes you are getting to the stage where adrenals need to start thinking about working again.. but the effects of adrenal insufficiency are not the same as you describe. That sounds like too little Pred for your disease - just happened to coincide.

As you reduced by only 0.5mg this time, maybe once you have got things back on track by returning to previous dose try using one of the slower tapering plans we suggest. They help on 2 fronts - getting lower on Pred and nudging adrenals.

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PMRpro profile image
PMRproAmbassador

Seven mg CAN be difficult for some people - but it might be 9mg or 5mg where problems appear. Traditionally 7mg has been regarded as the physiological dose where adrenal function must wake up again but we know that some people have problems at higher doses and others never have a problem, Recent research found that even 2 or 3mg is plenty to fulfil the body's needs. The adrenal glands don't "kick-in" - they wake up gradually, just topping things up as the pred dose drops. There is no dramatic awakening!

But what you are describing isn't typical of adrenal laziness - that sounds much more like a flare of the symptoms due to the PMR inflammation not being fully managed by the dose of pred. You aren't reducing the dose relentlessly to zero - you are titrating the dose to find the lowest effective dose, the lowest dose that gives the same level of relief as the starting dose did. Over time that will get lower and lower as the disease activity falls and eventually for most people it will burn out and they are able to get off pred altogether. But in the earlier days it is higher and it sounds as if at the present time you need 8mg to stop the inflammation building up again. It doesn't mean you won't get lower - just not yet. It will come. And surprisingly, when you get stuck like this, taking a month or so off the performance of tapering often helps when you start again.

Zebedee44 profile image
Zebedee44

I found that 8mg was my “happy place” and stayed at that dose for four years, enabling me to manage my life, remain active, and care for my demanding elderly mother. As you know you do have to balance your pred dose with your activity, remembering that you are not in a race to get to the end of the treatment, you are just keeping the inflammation at a manageable level for best QOL.

Racer2024 profile image
Racer2024

strangely I got down to 7mg and woke up most days with shoulder and hip aches. I decided to go up to 9mg for a few days then down to 8mg for a few weeks. This month I’ve gone down to 7mg and it seems ok.

I did do a park run today and my calves cramped up towards the end and are now really quite painful. I think it’s nothing to do with PMR and more to do with me pushing too hard. You’d think I’d know better at my age! 😁

Wilson1952 profile image
Wilson1952

I would just see how things go for another week and if you still have aches..go back to 8and give it another couple weeks before doing 7.5 again...if that doesn't work then maybe you should try going a bit higher say 9 and then in a month try 8;5 and gradually start down again in a month. I've had to experiment with my does..good luck...

Seal49 profile image
Seal49 in reply toWilson1952

Thank you. That is what I'm doing

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