Is This a Safe Taper as Prescribed by my doctor?

Posted by myrlyn3b @myrlyn3b, Feb 14 7:48am

I’ve been on prednisone for about 18 months trying to taper. I was down to 7.5 mg daily in December but totally debilitated with PMR pain. I couldn’t walk at all, couldn’t get my socks or shoes on, could barely get in or out of bed, was totally housebound etc. in excruciating pain. All around the hip girdle. Ultrasound showed tendinitis, bursitis, endesopathy all in joints and muscles.
The only advice my doctor ever gave me was to get off prednisone as fast as possible.
I told him I can’t live like this and must go up to a higher dosage.
He’s prescribed the pills now by telling me to go to 40 mg for 4 days, then 30 mg for 4 days, then 20 mg for 4 days, 10 mg for 4 days, then 1 mg for 5 days and I’m done!
Would I not be in adrenal crisis if I did this after being on prednisone for so long?

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

@heals1225

Thanks for your informative reply @cavalryman . I am currently on my second long term prednisone treatment, the first starting in 2014. I was then officially diagnosed with PMR, and finally got off the pills after 2 full years, which back then I felt was a very long time. Fast forward to summer of 2023, and my symptoms returned, yet my markers do not show PMR. The symptoms are the same, but thankfully not quite as severe as previous symptoms were. However, I’m now rapidly coming close to two years and am currently on 9mg/day. What’s very disappointing is that back in early December I had gotten down to 2 mg. for a week or so, while tapering down 1-2 mg/ month, and suddenly had two terrible days. I was then told by my rheumatologist to double the dose to 4 mg but with no relief. I then went back up to 10 mg until February where I’m now on 9 mg. After reading a lot of comments and posts from others with similar issues, and being fairly anxious about the tapering process , it sounds like I may be at less risk of flair ups with .5 mg reductions every two weeks? Any thoughts on this? My doctor recommended 1 mg reduction on March 1st, and continue on that schedule as long as I am relatively stable. When doing the math though, .5 mg reduction per month means another year and a half, and that’s if I make it that far without incident. Sorry for the long post, and am hoping you and perhaps some others will read my story and offer some sound advice. Thank you to all and I wish everyone the best results in your journey getting off these medications and back to a healthier life!

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What has worked for me:
Starting at 10, decrease at 1 per month to 5. Below 5, decrease at 0.5 per month. I am now at 0.5 until the end of this month, when I go to zero. Amen.
I had my share of non-PMR-level aches and pains during this 15-month period, but handled it with Tylenol and physical therapy, and once below 3, with an occasional 125mg dose of ibuprofen taken with food and an antacid, all with doc’s approval. At this point, the niggling pains have been gone for the last 2 months.
What worked for me may not work for anyone else. Good luck.

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Thanks Art! All the best til 0!

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@heals1225

Thanks for your informative reply @cavalryman . I am currently on my second long term prednisone treatment, the first starting in 2014. I was then officially diagnosed with PMR, and finally got off the pills after 2 full years, which back then I felt was a very long time. Fast forward to summer of 2023, and my symptoms returned, yet my markers do not show PMR. The symptoms are the same, but thankfully not quite as severe as previous symptoms were. However, I’m now rapidly coming close to two years and am currently on 9mg/day. What’s very disappointing is that back in early December I had gotten down to 2 mg. for a week or so, while tapering down 1-2 mg/ month, and suddenly had two terrible days. I was then told by my rheumatologist to double the dose to 4 mg but with no relief. I then went back up to 10 mg until February where I’m now on 9 mg. After reading a lot of comments and posts from others with similar issues, and being fairly anxious about the tapering process , it sounds like I may be at less risk of flair ups with .5 mg reductions every two weeks? Any thoughts on this? My doctor recommended 1 mg reduction on March 1st, and continue on that schedule as long as I am relatively stable. When doing the math though, .5 mg reduction per month means another year and a half, and that’s if I make it that far without incident. Sorry for the long post, and am hoping you and perhaps some others will read my story and offer some sound advice. Thank you to all and I wish everyone the best results in your journey getting off these medications and back to a healthier life!

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Hello heals1225, I am sorry to hear that you are on this journey for the second time. I have been doing a lot of research for the last few years and that research states that the patients who come off steroids quickly initially are more likely to relapse. I do understand that you feel two years is a long time. 40% to 50% of patients have symptoms for over two years, and 25% have symptoms for over five years.
Regarding the taper, personally I would not set targets so far in advance. I too did this at my gp recommendations for the first year and a half and failed miserably. Today I would now do a taper one half an mg. I am presently on one and a half mg. So the first week I would do the new lower dose on Monday and Thursday. Then if I felt ok, the second week I would add another two days of the lower dose Monday, Wednesday, Friday, Sunday. Then in the third week I would do the new lower dose every day. Then see how you feel, if you feel okay just repeat the exercise when you are ready. If you feel a little more pain appearing just wait until it feels better.
When you reduce to a lower level, if it only feels a bit more painful try and sit it out for a couple of weeks and take painkillers. That may be all that is needed as your adrenals start to work again. Always remember that it is not slow if it works ! Hope this is of some help.

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@cavalryman

Hello heals1225, I am sorry to hear that you are on this journey for the second time. I have been doing a lot of research for the last few years and that research states that the patients who come off steroids quickly initially are more likely to relapse. I do understand that you feel two years is a long time. 40% to 50% of patients have symptoms for over two years, and 25% have symptoms for over five years.
Regarding the taper, personally I would not set targets so far in advance. I too did this at my gp recommendations for the first year and a half and failed miserably. Today I would now do a taper one half an mg. I am presently on one and a half mg. So the first week I would do the new lower dose on Monday and Thursday. Then if I felt ok, the second week I would add another two days of the lower dose Monday, Wednesday, Friday, Sunday. Then in the third week I would do the new lower dose every day. Then see how you feel, if you feel okay just repeat the exercise when you are ready. If you feel a little more pain appearing just wait until it feels better.
When you reduce to a lower level, if it only feels a bit more painful try and sit it out for a couple of weeks and take painkillers. That may be all that is needed as your adrenals start to work again. Always remember that it is not slow if it works ! Hope this is of some help.

Jump to this post

"When you reduce to a lower level, if it only feels a bit more painful try and sit it out for a couple of weeks and take painkillers. That may be all that is needed as your adrenals start to work again. Always remember that it is not slow if it works ! Hope this is of some help."
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I agree with this! However, if the adrenals aren't ready to start working again there is nothing you can do except wait until they do. Mostly you have to hope and stay on a low dose of Prednisone until the adrenals decide to work again.

I had to sit it out on 3 mg for 6 months until an endocrinologist said my cortisol level improved.
Then she thought it "might be safe" to discontinue prednisone. During my wait, she implored me not to increase my prednisone dose unless I talked to her first.

Since I didn't seem to need Prednisone for PMR anymore AND my cortisol level was good I was able to do a 3-2-1-zero countdown taper. It was like all the stars had to be aligned for successful discontinuation of Prednisone.

One star might have been misaligned. I needed Prednisone again after my first attempt to discontinue Prednisone. My second attempt was successful but my second launch window didn't happen until several months later.

In my opinion, tapering off Prednisone is a bit like rocket science!

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@dadcue

"When you reduce to a lower level, if it only feels a bit more painful try and sit it out for a couple of weeks and take painkillers. That may be all that is needed as your adrenals start to work again. Always remember that it is not slow if it works ! Hope this is of some help."
----------------------------
I agree with this! However, if the adrenals aren't ready to start working again there is nothing you can do except wait until they do. Mostly you have to hope and stay on a low dose of Prednisone until the adrenals decide to work again.

I had to sit it out on 3 mg for 6 months until an endocrinologist said my cortisol level improved.
Then she thought it "might be safe" to discontinue prednisone. During my wait, she implored me not to increase my prednisone dose unless I talked to her first.

Since I didn't seem to need Prednisone for PMR anymore AND my cortisol level was good I was able to do a 3-2-1-zero countdown taper. It was like all the stars had to be aligned for successful discontinuation of Prednisone.

One star might have been misaligned. I needed Prednisone again after my first attempt to discontinue Prednisone. My second attempt was successful but my second launch window didn't happen until several months later.

In my opinion, tapering off Prednisone is a bit like rocket science!

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Yes it can take up to a year for the adrenals to start working again. Many people don't realise that the final bit of tapering can be hard, but if you keep increasing the pred when it gets hard you are just putting off the hard bit till later yet again. Oh if only we were all the same !

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@cavalryman

Hello heals1225, I am sorry to hear that you are on this journey for the second time. I have been doing a lot of research for the last few years and that research states that the patients who come off steroids quickly initially are more likely to relapse. I do understand that you feel two years is a long time. 40% to 50% of patients have symptoms for over two years, and 25% have symptoms for over five years.
Regarding the taper, personally I would not set targets so far in advance. I too did this at my gp recommendations for the first year and a half and failed miserably. Today I would now do a taper one half an mg. I am presently on one and a half mg. So the first week I would do the new lower dose on Monday and Thursday. Then if I felt ok, the second week I would add another two days of the lower dose Monday, Wednesday, Friday, Sunday. Then in the third week I would do the new lower dose every day. Then see how you feel, if you feel okay just repeat the exercise when you are ready. If you feel a little more pain appearing just wait until it feels better.
When you reduce to a lower level, if it only feels a bit more painful try and sit it out for a couple of weeks and take painkillers. That may be all that is needed as your adrenals start to work again. Always remember that it is not slow if it works ! Hope this is of some help.

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Thanks for your response @cavalryman . Your schedule seems a lot like @megzeng , so that gives me even more confidence to follow this schedule. Will keep you all posted! 😀

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@art43

What has worked for me:
Starting at 10, decrease at 1 per month to 5. Below 5, decrease at 0.5 per month. I am now at 0.5 until the end of this month, when I go to zero. Amen.
I had my share of non-PMR-level aches and pains during this 15-month period, but handled it with Tylenol and physical therapy, and once below 3, with an occasional 125mg dose of ibuprofen taken with food and an antacid, all with doc’s approval. At this point, the niggling pains have been gone for the last 2 months.
What worked for me may not work for anyone else. Good luck.

Jump to this post

This is exactly what I did with only minor flares at 1.5 and .5. Prednisone free for 6 weeks now with no ill effects. Fingers crossed. Tylenol never did anything for me so just toughed it out.

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Recently I caught Nurovirus and was so sick for three days that I was throwing up so much my drugs did not stay down. As I got better from that, my GCA flared and I began the blurred vision, headaches, ear ache, temple and tongue were affected. I am trying to reduce prednisone from 60 and am at 7.5 I decrease at .5 mg a month and was going fine until the Nurovirus episode. Now I can’t seem to get back on track with the GCA. I don’t want to increase the Prednisone but will things resolve if I don’t

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@tapamil65

Recently I caught Nurovirus and was so sick for three days that I was throwing up so much my drugs did not stay down. As I got better from that, my GCA flared and I began the blurred vision, headaches, ear ache, temple and tongue were affected. I am trying to reduce prednisone from 60 and am at 7.5 I decrease at .5 mg a month and was going fine until the Nurovirus episode. Now I can’t seem to get back on track with the GCA. I don’t want to increase the Prednisone but will things resolve if I don’t

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I had an encounter with norovirus and ended up in intensive care for two days. I was thinking the worst of norovirus was over and went back to work for a day. I wasn't feeling well after work and I was very short of breath when someone called an ambulance.

I thought norovirus and dehydration caused all the problems. I do know that all hell broke loose with my autoimmune and other medical conditions simultaneously. I needed 60 mg Prednisone to quiet things down but prednisone isn't a good treatment for norovirus.

The doctors in the intensive care unit were saying maybe it was my high dose and long term use of Prednisone that caused SOME of the problems. They also said there was no question that I needed a high dose of Prednisone with the runaway freight train of an immune system I have. It was a "cascade of blood related events" was the best they could surmise.

I recovered completely but not right away. A week after I was discharge from to hospital, I discussed the whole ordeal with my primary care doctor. We were discussing the massive bilateral pulmonary embolism I had and the need for warfarin and other long term care and goals. My primary care doctor was "noncommittal" about what caused everything to flare up all once like it did. He even apologized that he might have missed something. I do recall his exact words though. He said, "People get norovirus all the time and what happened to me doesn't usually happen." He then added that I was lucky to still be alive.

Everything resolved with time but I had more frequent follow-up visits including several new doctors like a pulmonologist and a hematologist during the year that followed. The new doctors had no explanation for what happened to me either.

How recent was this norovirus infection you had? I wasn't able to go from 60 mg to 7.5 mg until years later. Were you unscathed?

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