Tapering off of Prednisone

Posted by e @epvb, Mar 27, 2017

I am currently on 20 mg prednisone after tapering down from 40 mg which I was on for 2 weeks. I have been directed to taper down again next week to 10 mg. I am experiencing terrible headaches lasting days at a time as well as neck pain and insomnia. Has anyone found any relief or remedies for headache/neck pain? Thank you.

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I'd get a second opinion. Tapering from 20 to 10 mgs. in one shot is generally not recommended unless there is some important reason (e.g. your doc thinks your symptoms are a side-affect of prednsione?). Given your headaches, have you been checked for GCA? Safest way would be to drop to 17.5 and if you're okay there, then to 15 mgs. Slow and sure making certain you feel okay before dropping again. Once you get to 10 mgs. only drop 10% at a time.

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@kmeikle1

I'd get a second opinion. Tapering from 20 to 10 mgs. in one shot is generally not recommended unless there is some important reason (e.g. your doc thinks your symptoms are a side-affect of prednsione?). Given your headaches, have you been checked for GCA? Safest way would be to drop to 17.5 and if you're okay there, then to 15 mgs. Slow and sure making certain you feel okay before dropping again. Once you get to 10 mgs. only drop 10% at a time.

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Hi e(@epvb) I agree with @ kmeikle1. It's important for you to be tested for GCA, usually by a temporal artery biopsy, especially with the terrible headaches. If you ever have trouble seeing, go to an emergency room as a delay in treatment could cause blindness. 'The dosage of prednisone for GCA is higher than for PMR - I started at 40 mg (I'm small), then tapered down by 5 mg every two weeks until I hit 10 mg - then the taper went down 2.5 after a month. I'm down to 4 mg now for a while and virtually pain free. I was down to 3, but went back up to 4mg. My next taper, after bloodwork - a CRP, will probably be down by .5 mg. Hope you can get a second opinion. All the best, Teri

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I am taking Predisone 20 mg. for 10 days, for an ear infection. Should I be tapering off in the last 4 days or so? How much each day and do I break the pills up? Thank you! donna

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@dskellchock

I am taking Predisone 20 mg. for 10 days, for an ear infection. Should I be tapering off in the last 4 days or so? How much each day and do I break the pills up? Thank you! donna

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@dskellchock, I'm wondering if tapering off of prednisone might not be an issue if you are taking the prednisone for an ear infection vs taking prednisone for PMR or GCA. The reason you taper slowly for PMR or GCA is so that the pain stays under control which it doesn't if you taper too fast. Have you discussed tapering off with your doctor? Also, you can get a prescription for 10, 5, 2.5 and 1 mg tablets so that you don't have to cut the pills in half as much.

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Hi …I agree that tapering too fast can cause pain. I’ve been on prednisone since last September —long story. After some trial and error about how to taper and good advice here, I came up with a system that is working for me. No pain. However, it takes me about 3 weeks to ramp down one mg. It’s gonna be at least a year before I can totally get off prednisone at this rate. Right now I am ramping down to 12 mg (down from 20 a few months ago). I’m worried about being on prednisone so long but don’t want the pain to come back. Just wondering if others were on prednisone so long. Thanks!!!

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I have a complicated situation I would like feed-back on: I started out a little over a year ago on 20mg of pred and the relief was immediate and profound. I also have Crohn's and am on 2 grams of sulfasalazine a day. I also take Low Dose Naltrexone, 2 mg a day. At my intake my sed rate was normal and my CRP only a little elevated. But my symptoms were classic and my response to the pred was classic also.
After a time, my Rheumy had me taper and here is the first question: He tapers at 4 mg intervals about a month apart. Looking at everyone else, I see much smaller and longer tapers. Sure enough, I flared about 2 months ago and am at 12 mg now and doing better but not as well as I would like (or was). I have added MSM to my routine so now I am a lot of OTC and perscription anti-inflamatories. My sed rate is still normal and my CRP down to the high normal cutoff for their lab so my doc doesn't think my other pain and stiffness is PMR. Wants me to explore nerve conduction studies for my legs. It takes forever to get those apts. I am having my hip replacement checked just in case. (Done in 2020) I don't want more pred because in have glaucoma and I am pushing as it is. I think he is relying on my labs too much for his decision making. I welcome opinions.

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@suetex

I have a complicated situation I would like feed-back on: I started out a little over a year ago on 20mg of pred and the relief was immediate and profound. I also have Crohn's and am on 2 grams of sulfasalazine a day. I also take Low Dose Naltrexone, 2 mg a day. At my intake my sed rate was normal and my CRP only a little elevated. But my symptoms were classic and my response to the pred was classic also.
After a time, my Rheumy had me taper and here is the first question: He tapers at 4 mg intervals about a month apart. Looking at everyone else, I see much smaller and longer tapers. Sure enough, I flared about 2 months ago and am at 12 mg now and doing better but not as well as I would like (or was). I have added MSM to my routine so now I am a lot of OTC and perscription anti-inflamatories. My sed rate is still normal and my CRP down to the high normal cutoff for their lab so my doc doesn't think my other pain and stiffness is PMR. Wants me to explore nerve conduction studies for my legs. It takes forever to get those apts. I am having my hip replacement checked just in case. (Done in 2020) I don't want more pred because in have glaucoma and I am pushing as it is. I think he is relying on my labs too much for his decision making. I welcome opinions.

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@suetex, you mentioned you flared a couple of months ago but were doing OK prior to that. When my PMR was active the first few time tapering down I went from 20 to 15 for a month and tried to go down again but the PMR pain came back so I bumped it up half of what I took it down and the PMR pain was gone again at 17.5 mg. From then on I tapered slowly, never more than 1 to 2.5 mg. At the time I was tapering bi-weekly but as I got further along I changed to a weekly taper. My Rheumatologist told me that I should taper based on how I felt and what I could tolerate. I kept a daily pain log along with how much prednisone I took that morning. If my pain was more than a 2 on my own scale of 1 to 10 highest pain, I stayed at the same dose for another few days to see if I could taper down. If it was higher, I bumped my dosage up a half of the previous taper to see if I could still keep it less than the previous dosage.

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@johnbishop

@suetex, you mentioned you flared a couple of months ago but were doing OK prior to that. When my PMR was active the first few time tapering down I went from 20 to 15 for a month and tried to go down again but the PMR pain came back so I bumped it up half of what I took it down and the PMR pain was gone again at 17.5 mg. From then on I tapered slowly, never more than 1 to 2.5 mg. At the time I was tapering bi-weekly but as I got further along I changed to a weekly taper. My Rheumatologist told me that I should taper based on how I felt and what I could tolerate. I kept a daily pain log along with how much prednisone I took that morning. If my pain was more than a 2 on my own scale of 1 to 10 highest pain, I stayed at the same dose for another few days to see if I could taper down. If it was higher, I bumped my dosage up a half of the previous taper to see if I could still keep it less than the previous dosage.

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Thank you for your input. I wish my dr. seemed even a little bit that approachable to allow me to set my own pace. When I was doing well, he seemed very content to give me just a few minutes-which was all I needed. Now, things have changed, but he hasn't. When I see him next, I will be very forward and see how he handles it. If he has only one way of handling this disease then he isn't the doctor for me. I think keeping a pain log is a good idea.

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@suetex

Thank you for your input. I wish my dr. seemed even a little bit that approachable to allow me to set my own pace. When I was doing well, he seemed very content to give me just a few minutes-which was all I needed. Now, things have changed, but he hasn't. When I see him next, I will be very forward and see how he handles it. If he has only one way of handling this disease then he isn't the doctor for me. I think keeping a pain log is a good idea.

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I think you are right to advocate for yourself. Hopefully your doctor will see that you want to be a part of the solution and learn more about your condition. Here are a couple of links that I think may help you with your next appointment.

-- Tools for the visit: https://patientrevolution.org/visit-tools
-- Communication barriers: https://patientrevolution.org/barriers

Good luck!

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@juneh

Hi …I agree that tapering too fast can cause pain. I’ve been on prednisone since last September —long story. After some trial and error about how to taper and good advice here, I came up with a system that is working for me. No pain. However, it takes me about 3 weeks to ramp down one mg. It’s gonna be at least a year before I can totally get off prednisone at this rate. Right now I am ramping down to 12 mg (down from 20 a few months ago). I’m worried about being on prednisone so long but don’t want the pain to come back. Just wondering if others were on prednisone so long. Thanks!!!

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I’ve been on Prednisone for at least ten years for PMR. I’ve spent most of the last 3-4 years on 3 mg/day. When I’ve gone below 3, my symptoms come back with a vengeance, & I go back to 5 & slowly taper back to 3. I’m 86-years old & expect to be on Prednisone for the rest of my life. All my health checkups, blood tests, etc. are within normal range. My most annoying symptom of long term Prenisone use is very thin skin, easy bruising, & what seems to be permanent discoloration in my lower legs. Otherwise, I feel fine & live an active life (for an 86-year-old, I guess 😊.)

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