1. < Polymyalgia Rheumatica (PMR)

Any Tips For Tapering Off Prednisone?

Posted by hopeinal @hopeinal, Aug 26 12:19pm

This is my third attempt to taper off of Prednisone or at least down to about 4 mg since my rheumatologist said that I wouldn't have all of these gruesome side effects at that dose and could stay on it for life if necessary. The thing is that as soon as I get down to 7 mg I start to flare. Today is my 3rd day on 7 mg and my shoulders and lower back are so stiff and painful it hurts to move.

I'm really discouraged. Have followed the taper schedule my rheumie gave me and stayed at each dose for 2 weeks before dropping down another mg. Any tips or advice on how to taper without having a flare would be much appreciated.

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jds2123 | @jds2123 | Aug 31 8:32am

I find it interesting that you mentioned your low back as a source of PMR pain. I too have been having horrific am pain in my low back and the prednisone helps but my rheumatologist insists that it is not from PMR and has referred me to a pain clinic. I am scheduled for an ESI next week and possibly a facet injections and rhizotomy. The pain pills (tramadol) don’t touch the pain. It seems only the prednisone helps. It is my opinion the back pain is from the PMR But my rheumatologist won’t listen. Maybe time for a new Dr.

REPLY
andirae | @andirae | Sep 2 8:27pm

Well, my visit to my rheumatologist last week did not go as expected. She has been on me about moving my dosage level up and going on methotrexate or kevzara. Both of which I am not ready to tackle yet. I have been tapering as I said and have worked down to 5mg. It's not been perfect but I have been able to maintain it. At my visit she did an about face and agreed that I continue to taper down. I was rather surprised. But I am concerned about how she suggested to taper. She thinks I should go down 1mg every two weeks! Is that possible to do successfully? That seems awful fast to me. I am no expert and I know many of you have been doing this process longer and have had more experience. Has anyone done this? Needless to say I have been hesitant to do any move at this point and has caused great anxiety. I do want to continue tapering successfully.
I know everyone is different.

REPLY
4 replies
DadCue | @dadcue | Sep 3 6:50am
In reply to @andirae "Well, my visit to my rheumatologist last week did not go as expected. She has been..." + (show)
@andirae

Well, my visit to my rheumatologist last week did not go as expected. She has been on me about moving my dosage level up and going on methotrexate or kevzara. Both of which I am not ready to tackle yet. I have been tapering as I said and have worked down to 5mg. It's not been perfect but I have been able to maintain it. At my visit she did an about face and agreed that I continue to taper down. I was rather surprised. But I am concerned about how she suggested to taper. She thinks I should go down 1mg every two weeks! Is that possible to do successfully? That seems awful fast to me. I am no expert and I know many of you have been doing this process longer and have had more experience. Has anyone done this? Needless to say I have been hesitant to do any move at this point and has caused great anxiety. I do want to continue tapering successfully.
I know everyone is different.

Jump to this post

When I was on prednisone alone I could never get down to 5 mg let alone taper any lower than that.

I tapered that quickly when a biologic called Actemra (tocilizumab) was tried. I tapered my prednisone dose by 1 mg per week when I was doing Actemra injection so yes tapering that quickly is possible.

I had to stop tapering when I reached 3 mg of prednisone because of a low cortisol level.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
-----------------------------
When my cortisol level improved, an endocrinologist said I could go from 3 mg to zero without tapering. My endocrinologist said no tapering was necessary at that low of a dose as long as my cortisol level was adequate.

I suspect faster tapering while on low doses of prednisone depends on your adrenal function. This assumes PMR is in remission. Kevzara might help to get PMR into remission but it doesn't come with any guarantees.

Why are you resistant to Kevzara?

REPLY
1 reply
cgm | @cgm | Sep 3 7:15am
In reply to @andirae "Well, my visit to my rheumatologist last week did not go as expected. She has been..." + (show)
@andirae

Well, my visit to my rheumatologist last week did not go as expected. She has been on me about moving my dosage level up and going on methotrexate or kevzara. Both of which I am not ready to tackle yet. I have been tapering as I said and have worked down to 5mg. It's not been perfect but I have been able to maintain it. At my visit she did an about face and agreed that I continue to taper down. I was rather surprised. But I am concerned about how she suggested to taper. She thinks I should go down 1mg every two weeks! Is that possible to do successfully? That seems awful fast to me. I am no expert and I know many of you have been doing this process longer and have had more experience. Has anyone done this? Needless to say I have been hesitant to do any move at this point and has caused great anxiety. I do want to continue tapering successfully.
I know everyone is different.

Jump to this post

I attempted 1 mg monthly and kept flaring. I then reduced by 1/2 mg monthly and am now approx 2 months prednisone free. Not pain free, but managing, after over three years on prednisone.

REPLY
aussiedogmom | @aussiedogmom | Sep 3 7:41am
In reply to @andirae "Well, my visit to my rheumatologist last week did not go as expected. She has been..." + (show)
@andirae

Well, my visit to my rheumatologist last week did not go as expected. She has been on me about moving my dosage level up and going on methotrexate or kevzara. Both of which I am not ready to tackle yet. I have been tapering as I said and have worked down to 5mg. It's not been perfect but I have been able to maintain it. At my visit she did an about face and agreed that I continue to taper down. I was rather surprised. But I am concerned about how she suggested to taper. She thinks I should go down 1mg every two weeks! Is that possible to do successfully? That seems awful fast to me. I am no expert and I know many of you have been doing this process longer and have had more experience. Has anyone done this? Needless to say I have been hesitant to do any move at this point and has caused great anxiety. I do want to continue tapering successfully.
I know everyone is different.

Jump to this post

I'm on Kevzara - which is my new favorite drug ever!!! Absolutely no side effects and it returned me to symptom free status! After a few months on Kevzara, I began tapering 1 mg per week. Not a problem.till I dropped from 4 to 3. Working with my geriatric rheumatologist, I increased to 4 then 5..I'm at 5 now and will touch base with him later this week. If I can stay at 5mg or below, I'd love it. However he wants me free of pain and stiffness and let that be my new dose and I'm not quite free of pain and stiffness.

Urge you to give Kevzara a try. I was afraid of both Pred and Kevzara but my Dr gave me confidence to try. Also - let's face it, it's a quality of life issue. As I said to a civilian recently, "How many seasons are you willing to watch go by as you sit at your kitchen table every morning, waiting to be able to move?"

REPLY
1 reply
DadCue | @dadcue | Sep 3 8:03am
In reply to @aussiedogmom "I'm on Kevzara - which is my new favorite drug ever!!! Absolutely no side effects and..." + (show)
@aussiedogmom

I'm on Kevzara - which is my new favorite drug ever!!! Absolutely no side effects and it returned me to symptom free status! After a few months on Kevzara, I began tapering 1 mg per week. Not a problem.till I dropped from 4 to 3. Working with my geriatric rheumatologist, I increased to 4 then 5..I'm at 5 now and will touch base with him later this week. If I can stay at 5mg or below, I'd love it. However he wants me free of pain and stiffness and let that be my new dose and I'm not quite free of pain and stiffness.

Urge you to give Kevzara a try. I was afraid of both Pred and Kevzara but my Dr gave me confidence to try. Also - let's face it, it's a quality of life issue. As I said to a civilian recently, "How many seasons are you willing to watch go by as you sit at your kitchen table every morning, waiting to be able to move?"

Jump to this post

People say taking Prednisone is about quality of life. Waiting for prednisone to take effect every day to be able to move was a quality of life issue for me.

My monthly infusions of Actemra give me a better quality of life than Prednisone ever did. However, I'm also afraid of long term Actemra use. After 5 years of Actemra being symptom free and Prednisone free has dramatically improved my quality of life.

Minimal side effects from Actemra are a bonus but I don't know how long that might last.

REPLY
andirae | @andirae | Sep 3 9:05am
In reply to @dadcue "When I was on prednisone alone I could never get down to 5 mg let alone..." + (show)
@dadcue

When I was on prednisone alone I could never get down to 5 mg let alone taper any lower than that.

I tapered that quickly when a biologic called Actemra (tocilizumab) was tried. I tapered my prednisone dose by 1 mg per week when I was doing Actemra injection so yes tapering that quickly is possible.

I had to stop tapering when I reached 3 mg of prednisone because of a low cortisol level.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
-----------------------------
When my cortisol level improved, an endocrinologist said I could go from 3 mg to zero without tapering. My endocrinologist said no tapering was necessary at that low of a dose as long as my cortisol level was adequate.

I suspect faster tapering while on low doses of prednisone depends on your adrenal function. This assumes PMR is in remission. Kevzara might help to get PMR into remission but it doesn't come with any guarantees.

Why are you resistant to Kevzara?

Jump to this post

Adding new drugs is always a caution for me. One never truly knows the side effects and what it may do to the body long term. Don’t want more issues. But I may still have to do something other than prednisone. I haven’t entirely ruled it out.

REPLY
2 replies
emaureen | @emaureen | Sep 3 6:36pm
In reply to @andirae "Well, my visit to my rheumatologist last week did not go as expected. She has been..." + (show)
@andirae

Well, my visit to my rheumatologist last week did not go as expected. She has been on me about moving my dosage level up and going on methotrexate or kevzara. Both of which I am not ready to tackle yet. I have been tapering as I said and have worked down to 5mg. It's not been perfect but I have been able to maintain it. At my visit she did an about face and agreed that I continue to taper down. I was rather surprised. But I am concerned about how she suggested to taper. She thinks I should go down 1mg every two weeks! Is that possible to do successfully? That seems awful fast to me. I am no expert and I know many of you have been doing this process longer and have had more experience. Has anyone done this? Needless to say I have been hesitant to do any move at this point and has caused great anxiety. I do want to continue tapering successfully.
I know everyone is different.

Jump to this post

At 5mg, I tried reducing by .5mg every two weeks, and the results weren't good (pain first reduction, increased pain second). After a few days at 4mg, I returned to 5mg and started back down tapering at the rate of .25mg every 10 days. This worked for me - minimal to no discomfort. Of course it also doubled the remaining time, which meant ending in July rather than April. I don't regret the extra 2-1/2 months.

REPLY
1 reply
DadCue | @dadcue | Sep 3 6:54pm
In reply to @andirae "Adding new drugs is always a caution for me. One never truly knows the side effects..." + (show)
@andirae

Adding new drugs is always a caution for me. One never truly knows the side effects and what it may do to the body long term. Don’t want more issues. But I may still have to do something other than prednisone. I haven’t entirely ruled it out.

Jump to this post

I added Actemra but I subtracted Prednisone after 12 months.

After I subtracted Prednisone, I also subtracted famotidine, amlodipine, losartin, spirolactone, warfarin and timilol eye drops for ocular hypertension. I can't forget that atorvastatin was stopped too.

My primary care doctor says she usually prescribes medications but I keep her busy with deprescribing medications. When I go to my primary care visits, she wants to know what else needs to be deprescribed.

Those are just the medications. Many symptoms that were "attributed" to long term prednisone use or a low cortisol level have also stopped.

My hormone levels have improved but my endocrinolgist says my hormone levels need to rebalance themselves. Diet and exercise are the endocrinologist's recommendations.

Wegovy was added by my endocrinologist to help me lose weight, improve insulin resistance and decrease my overall risk of another cardiovascular event.

REPLY
andirae | @andirae | Sep 4 6:33am
In reply to @emaureen "At 5mg, I tried reducing by .5mg every two weeks, and the results weren't good (pain..." + (show)
@emaureen

At 5mg, I tried reducing by .5mg every two weeks, and the results weren't good (pain first reduction, increased pain second). After a few days at 4mg, I returned to 5mg and started back down tapering at the rate of .25mg every 10 days. This worked for me - minimal to no discomfort. Of course it also doubled the remaining time, which meant ending in July rather than April. I don't regret the extra 2-1/2 months.

Jump to this post

Did you cut pills? That would seem difficult to maintain accuracy.

Did you titrate between old and new each time some?

REPLY
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