Tapering and Dealing with a Flareup

Posted by susanew @susanew, 5 days ago

I am so discouraged! I started at 8 mg Medrol (methylprednisolone) and was encouraged to taper and I got down to 1 mg with a few aches and pains. Aterward, I stopped medicating and within three days had a terrible flare. I went back up to 4 mg and now trying to take 2 mg with some aches. I am not sure how much I am supposed to take with a flare and again how to taper. I did make a doctor appointment to discuss. I just do not get it. Why am I bothering to get down to no medication when my body goes into a terrible flare. I am so discouraged!

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Tapering is a complex issue. I’ve been down to 8mg of prednisone three times now. Bad flares each time when I dropped from 9 to 8.5 and then to 8.
The taper has to be very slow especially once you get under 10mg of prednisone. As to dealing with the flares. My doc said well just go back up to 8.5mg of prednisone..the last level you felt reasonably well. Nope. Once you flare it often takes going back up a bit to get the inflammation under control. I was at 8mg last week. I am currently at 12mg. But yes talk to your doctor and try not to get discouraged. It just takes awhile.

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@barracudacool

Tapering is a complex issue. I’ve been down to 8mg of prednisone three times now. Bad flares each time when I dropped from 9 to 8.5 and then to 8.
The taper has to be very slow especially once you get under 10mg of prednisone. As to dealing with the flares. My doc said well just go back up to 8.5mg of prednisone..the last level you felt reasonably well. Nope. Once you flare it often takes going back up a bit to get the inflammation under control. I was at 8mg last week. I am currently at 12mg. But yes talk to your doctor and try not to get discouraged. It just takes awhile.

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How long are you staying on each reduction before moving onto the next? And was there some slight increased aches/pains at 8.5mg which may have been a clue to stay on that a bit longer rather than keep reducing? I'm asking because I had my first flare at 6mg, but new (tolerable) aches started at the 6.5mg reduction. That's the point at which I should have gone back to 7 for a bit, rather than optimistically reducing to 6mg.

As I get closer to reducing to that dose this time, I intend to sit on around 7mg/6.5mg for a while longer this time. You're right that once the inflammation settles in, the rise to fix it has to be more. That's no good.

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You are so right. I had to go up a level to feel some relief. Not total, but some. Have now reduced back to a level (2 mg) where there had been no pain before flare. Now there still is some stiffness but tolerable.

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@susanew

You are so right. I had to go up a level to feel some relief. Not total, but some. Have now reduced back to a level (2 mg) where there had been no pain before flare. Now there still is some stiffness but tolerable.

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Sorry you're having trouble. Most of us know the frustration of doing all that careful reduction work then having a flare of pain/inflammation come back. It stinks doesn't it. Are you reducing by 1mg each time even at that low dose, or are you doing .5mg reductions or less?

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@megz

How long are you staying on each reduction before moving onto the next? And was there some slight increased aches/pains at 8.5mg which may have been a clue to stay on that a bit longer rather than keep reducing? I'm asking because I had my first flare at 6mg, but new (tolerable) aches started at the 6.5mg reduction. That's the point at which I should have gone back to 7 for a bit, rather than optimistically reducing to 6mg.

As I get closer to reducing to that dose this time, I intend to sit on around 7mg/6.5mg for a while longer this time. You're right that once the inflammation settles in, the rise to fix it has to be more. That's no good.

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When I got to 12mg I started going really slow with taper. Like a month between. And then at 10mg I started dropping by 1/2mg and sticking for a month. It is damn frustrating.

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@megz

Sorry you're having trouble. Most of us know the frustration of doing all that careful reduction work then having a flare of pain/inflammation come back. It stinks doesn't it. Are you reducing by 1mg each time even at that low dose, or are you doing .5mg reductions or less?

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I had been reducing 1 mg till I got to 2 mg. I was fine. Then went down to 1 mg. and started feeling some cramping and stiffness but it was workable. I think at that point, I probably should have gone back up to 2 mg. The reason I did not was because rheumatologist said when reducing medication there can be some discomfort for a week or two … and thought that was it …but in this instance, it just got worse. I knew when I tried taking Tylenol Arthritis strength with no effect, I was in trouble.

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Should one be totally free of pain before reducing? I've been on pred for3 years now. They started me on 5 mg, then 10, then 15 during the first month. Then started reducing 1 mg about each month. Relapsed twice back up to 15 mg. I was finally down to 6.5 mg for 29 days but symptoms slowly got worse and worse each day, so went up to 9 mg for 8 days and felt real good, so reduced to 7.5 mg (where I last felt ok).

But now I'm getting morning shoulder pain (3 or 4 on scale of 10) that lasts for 4 or 5 hours, then feel almost no pain for the rest of the day. Is that reasonable, or should I increase pred to where there is no morning pain and reduce slowly from that point only if there is no pain? I'm just not sure what the pain criteria is to do a reduction. Thanks.

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My rheumatologist wasn't completely up front with me about the taper effect. It was my cardiologist who informed me that I should expect serious flares when tapering. It's discouraging. But if we consider what it was like before the medication, I think we are able to understand, appreciate and accept.

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"Why am I bothering to get down to no medication when my body goes into a terrible flare. I am so discouraged!"
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I tried for 12 years without success. I understand your frustration. There is no magic tapering strategy that works so don't feel like you are doing anything wrong. Nobody knows the best way to taper off prednisone.

What I learned in 12 years of trying to taper off prednisone is the following. If PMR isn't in remission, then forget it ---just take the lowest prednisone dose possible.

It gets more complicated when you think PMR might be in remission especially when your prednisone dose is low. Long term prednisone suppresses adrenal function and your cortisol level drops. Cortisol is the hormone that your adrenals produce. Cortisol is a hormone that regulates inflammation. When you have a low cortisol level , you need to take synthetic cortisol, i.e. prednisone. It can take a long time for your adrenals to produce adequate amounts of cortisol again. However, you need to stay on a prednisone dose of 3 mg or less and hope your adrenals begin to produce cortisol again. Also hope PMR stays in remission or "burns itself out" as some people say.

Prednisone replaces the cortisol that your adrenals produce. It doesn't take very long for the adrenals to stop producing cortisol when we initially take Prednisone. The adrenals go into suspended animation very quickly.

Unfortunately, the longer we take prednisone, the adrenals tend to stay in suspended animation for a long time. That is why we need to taper off prednisone slowly in the first place. A slow taper gives the adrenals time to come out of suspended animation. However, you need to be able to stay on 3 mg +/- for this to happen.

What worked for me had many moving parts.

First ... I started a non-steroid medication that didn't suppress my adrenal function. There are several steroid sparing medications available. Some work better than others. It depends on the person because we all respond differently to different medications.

Second ... I expected some pain because my endocrinologist said a low cortisol level causes pain. Cortisol "regulates inflammation" so you might have a flare of PMR if your cortisol level is too low. With any luck, the steroid sparing medication will work so you don't have a flare.

Third, expect to stay at 3 mg or less for a long time until your cortisol level improves. It took more than 6 months while I stayed on 3 mg of Prednisone for my cortisol level to increase -- I was lucky. Both my endocrinologist and my rheumatologist agreed that I shouldn't go any lower than 3 mg until my cortisol level improved.

Surprisingly, after my cortisol level improved, my endocrinologist said I didn't need to taper my Prednisone dose anymore. I went from 3 mg to zero in a week so I did a fast taper.

I'm just sharing what worked for me. Please don't try any of this without medical supervision! Multiple medical specialists may need to be involved.

I got off Prednisone after 12 years ... it can be done. Frustration and being discouraged is fine but never give up. You can't increase your Prednisone dose for every kind of pain that you feel. Don't expect the process to be "pain free."

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Hello
I am in the UK and this is what is
recommended here.
Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 7-14 days and then drop back down to just above the dose you flared [not to the dose you flared as that is obviously too low].

As long as you don’t stay on the increased dose for longer than 14 days, it’s quite safe to drop back down. If you stay on it longer, you may need to follow a much slower taper.

Stay there for 3-4 weeks to make sure all okay before you try and taper again.

If inflammation has been allowed to build up significantly a staged reduction may be required.

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