Fast Prednisone taper?

Posted by rocksology @rocksology, 6 days ago

Because of the heart and kidney issues I'm experiencing I need to taper off the prednisone fairly quickly. April 28th I was on 12.5 mg and was diagnosed with HFpEF heart failure and my cardiologist said it is from the prednisone. She wants me to taper as fast as possible but didn't know what schedule. My PCP doesn't know what is safe either. (sigh) I don't have a Rheumatologist at this time.
I went from 12.5 on April 28th to 11.25 on 4/30, down to 10mg on May first, 9 mg on 5/5, then 8mg on 5/6. Lowered it on 5/8 to 7 mg and stayed there until 5/13 when I went down to 6mg, and yesterday, 5/16, I went down to 5mg. I'm hoping to go down to 2.5 mg on Wednesday and be off of it by next Sunday.
I am experiencing dizzyness, exhaustion and a little nausea along with the return of pain. I'm hoping I am not going too quickly for my adrenal gland! Any thoughts?
Terri

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@susanalka

I’m wondering, has anyone successfully tapered by 1mg instead of .5 , specifically when your dose is less than 7mg?

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Assuming that your PMR is in remission and the level of inflammation you experience from the PMR is lower than the dose of pred needed, then the remaining issue is how well your adrenal glands are performing. If they are slow to "wake up" from the steroid sleep they have been in, then a faster taper is likey not a good idea and can lead to all sorts of problems as others have suggested on this thread.

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@gmdb

You may not be getting much pain if your PMR has desisted and the inflammation it causes has gone. That would be a great result, and the minor pain you are getting may be simply from withdrawal. But the issue of adrenal insufficiency and the potential for adrenal crisis always remains at the low pred doses if you have been taking the medication for a long period. How long were you taking 5 mg or higher?

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The pain started in June of 2024, I was not diagnosed until November 2024 and my rheumatologist started me on prednisone. He prescribed 5 to 10mg, said start with the 5 and increase if needed. I started with 5 the pain went away. Never went to 10mg. He wanted to put me on an injection called Kevsara, but the protocol for that is 10mg for 8 weeks or more with minimal or no relief. So to answer your question I have been on 5 mg since November 14th 2024. I started tapering down from that the beginning of April 2025.

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@susanalka

I’m wondering, has anyone successfully tapered by 1mg instead of .5 , specifically when your dose is less than 7mg?

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I suspect many people can taper by 1 mg per month. That is what the guidelines say to do. Approximately half of the people diagnosed with PMR are able to taper off Prednisone within 1-2 years by following the guidelines.

It is interesting that you mention a dose of 7 mg specifically. That dose is problematic for many people. I suspect people start feeling the effects of adrenal insufficiency at that dose.

The endocrinologist who treated my adrenal insufficiency said I had to maintain a dose of 3 mg for an extended period of time for my cortisol to improve. At 7 mg of prednisone, there is little need for my adrenals to produce more cortisol. A Prednisone dose of 7 mg is said to be roughly the physiological dose of cortisol produced by the body daily. The need for the adrenals to start producing cortisol begins when a person is taking 7 mg of Prednisone.

In my case, 6 months at 3 mg without tapering was the extended period of time it took for my adrenals to produce more cortisol. How long it takes for the adrenals to recover depends on the person and how long they have been on Prednisone. For people who have taken prednisone for a very long time, their adrenals might never recover. In that case, a 5 mg dose of Prednisone for the rest of their life is called a maintenance dose.

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@jlipari

The pain started in June of 2024, I was not diagnosed until November 2024 and my rheumatologist started me on prednisone. He prescribed 5 to 10mg, said start with the 5 and increase if needed. I started with 5 the pain went away. Never went to 10mg. He wanted to put me on an injection called Kevsara, but the protocol for that is 10mg for 8 weeks or more with minimal or no relief. So to answer your question I have been on 5 mg since November 14th 2024. I started tapering down from that the beginning of April 2025.

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A biologic like Kevzara introduces another variable into the tapering process.

When I tried another biologic called Actemra, I tapered from 10 mg by 1 mg per month for the first 3 months. From 7 mg, I tapered by 1 mg per week down to 3 mg.

At 3 mg of prednisone, it was determined that my cortisol level was too low so I couldn't taper any lower than 3 mg for 6 months. After my cortisol level improved, my endocrinologist said 3 mg was such a low dose of prednisone there was no need for me to taper. I was told to simple stop taking Prednisone. As long as PMR was controlled AND my cortisol level stayed within an adequate range there was no need to taper from 3 mg of Prednisone to zero. I tapered anyway ... I decreased by 1 mg every couple of days to zero in less than a week.

Actemra did a fantastic job of controlling PMR so I don't need Prednisone anymore. My cortisol level improved the longer I was off Prednisone. My symptoms of adrenal insufficiency gradually disappeared.

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@dadcue

A biologic like Kevzara introduces another variable into the tapering process.

When I tried another biologic called Actemra, I tapered from 10 mg by 1 mg per month for the first 3 months. From 7 mg, I tapered by 1 mg per week down to 3 mg.

At 3 mg of prednisone, it was determined that my cortisol level was too low so I couldn't taper any lower than 3 mg for 6 months. After my cortisol level improved, my endocrinologist said 3 mg was such a low dose of prednisone there was no need for me to taper. I was told to simple stop taking Prednisone. As long as PMR was controlled AND my cortisol level stayed within an adequate range there was no need to taper from 3 mg of Prednisone to zero. I tapered anyway ... I decreased by 1 mg every couple of days to zero in less than a week.

Actemra did a fantastic job of controlling PMR so I don't need Prednisone anymore. My cortisol level improved the longer I was off Prednisone. My symptoms of adrenal insufficiency gradually disappeared.

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Are you still on Actemra and is it injection or oral?

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@jlipari

I have been tapering from 5mg, 1mg at a time. I went down to 4mg for 5 weeks and now I am on 3mg and I started 3 two weeks ago. I am getting some pain but nothing severe, only had to take Advil once. I am planning on staying at 3 for 6 weeks and then try going down to 2mg.

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Taking prednisone and ibuprofen is not a good idea. Both medications can irritate the stomach lining, increasing the risk of stomach ulcers, gastrointestinal bleeding, and, in rare cases, perforation of the stomach or intestines. This risk is amplified when taken together.

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@jlipari

Are you still on Actemra and is it injection or oral?

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I started with Actemra injections every other week. Eventually, I was switched to weekly injections.

I'm still on Actemra but I have done a monthly IV infusion for the last 3 years. I have been Prednisone free for more than 4 years and only do the monthly Actemra infusions.

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@gmdb

Assuming that your PMR is in remission and the level of inflammation you experience from the PMR is lower than the dose of pred needed, then the remaining issue is how well your adrenal glands are performing. If they are slow to "wake up" from the steroid sleep they have been in, then a faster taper is likey not a good idea and can lead to all sorts of problems as others have suggested on this thread.

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@gmdb thank you, I need to remember this. Very helpful.

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@chpfireball

Taking prednisone and ibuprofen is not a good idea. Both medications can irritate the stomach lining, increasing the risk of stomach ulcers, gastrointestinal bleeding, and, in rare cases, perforation of the stomach or intestines. This risk is amplified when taken together.

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My PCP said Tylenol is ok , but not ibuprofen for the same reasons.

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@jlipari

The pain started in June of 2024, I was not diagnosed until November 2024 and my rheumatologist started me on prednisone. He prescribed 5 to 10mg, said start with the 5 and increase if needed. I started with 5 the pain went away. Never went to 10mg. He wanted to put me on an injection called Kevsara, but the protocol for that is 10mg for 8 weeks or more with minimal or no relief. So to answer your question I have been on 5 mg since November 14th 2024. I started tapering down from that the beginning of April 2025.

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That's a great result, and yes, really doesn't seem there was a need for kevzara at all. I am unfortunately in a relatively small group (I believe) that has some resistance to the effects of pred, so need much higher doses to keep the inflammation under control.

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