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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@kimmgb

I just started Methatrexate last week. Today was my second time taking it. I have not had any side affects at all. The reason I decided to take it, 10 MG once a week, is because I could only get down to 8 MG of prednisone for a few days before a major flare up. The steroids are far worst than the methatrexate according to all the research I have done. It is scary when you read all the "possible" side affects for sure...they have to include them with any drug and most all have scary side affects. I will you well, and I will let you know how I make out on this plan. I should say that I have been on steroids for almost a year.

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I wish you well and hopefully this will be the answer to your flare ups.
Please let me know how you make out. I will be thinking of you.

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@dawn0723

I wish you well and hopefully this will be the answer to your flare ups.
Please let me know how you make out. I will be thinking of you.

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Thank you

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Hello Judy @jnebrig, Welcome to Connect. I thought I would answer your private message in this discussion on Tapering off of Prednisone so that you can meet other members with similar questions and learn what other members have shared. If you scroll to the bottom of this email notification and click on the VIEW & REPLY button it will take you to this post in the discussion. Then you can click the REPLY button under any post to reply to a member or click the POST COMMENT button at the bottom of the discussion to ask a new question from members.

You mentioned your doctor had you on prednisone for a year and only tapered down for 5 weeks. You said you abruptly stopped taking prednisone if I understood your private message. If your diagnosis is PMR I am not sure why a doctor would say it's OK to just stop taking prednisone. Each of us are different but the name of the game when trying to get off of prednisone is to taper down slowly and only when the pain is under control or at an acceptable level for you. It took me 3 and half years to taper off of prednisone for my first occurrence of PMR. The last six months I went back and forth between 1mg and 1/2mg until I could finally stop taking prednisone with only minor aches and pain in the morning. That would gradually get better as the day went on.

You said your pain is from both shoulders to elbows and both hips and back to your knees, and you are stiff in morning for 45 minutes but have aches 24/7. You also said it's hard to sleep at night due to aches and it sounds like PMR but you are certain it’s just getting off prednisone. You mentioned being off prednisone since May 25th and you see your doctor in 2 weeks but would like to hear from members on their thoughts.

To me that sounds like a fairly good description of PMR. Tapering from 20mg to off of prednisone in 5 weeks would be a challenge for anyone that has PMR. Other members may want to chime in and share their experience but I don't remember anyone that tapered off in 5 weeks. From my standpoint that would be a miracle.

Is your doctor a rheumatologist or have you been diagnosed by a rheumatologist?

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@johnbishop

Hello Judy @jnebrig, Welcome to Connect. I thought I would answer your private message in this discussion on Tapering off of Prednisone so that you can meet other members with similar questions and learn what other members have shared. If you scroll to the bottom of this email notification and click on the VIEW & REPLY button it will take you to this post in the discussion. Then you can click the REPLY button under any post to reply to a member or click the POST COMMENT button at the bottom of the discussion to ask a new question from members.

You mentioned your doctor had you on prednisone for a year and only tapered down for 5 weeks. You said you abruptly stopped taking prednisone if I understood your private message. If your diagnosis is PMR I am not sure why a doctor would say it's OK to just stop taking prednisone. Each of us are different but the name of the game when trying to get off of prednisone is to taper down slowly and only when the pain is under control or at an acceptable level for you. It took me 3 and half years to taper off of prednisone for my first occurrence of PMR. The last six months I went back and forth between 1mg and 1/2mg until I could finally stop taking prednisone with only minor aches and pain in the morning. That would gradually get better as the day went on.

You said your pain is from both shoulders to elbows and both hips and back to your knees, and you are stiff in morning for 45 minutes but have aches 24/7. You also said it's hard to sleep at night due to aches and it sounds like PMR but you are certain it’s just getting off prednisone. You mentioned being off prednisone since May 25th and you see your doctor in 2 weeks but would like to hear from members on their thoughts.

To me that sounds like a fairly good description of PMR. Tapering from 20mg to off of prednisone in 5 weeks would be a challenge for anyone that has PMR. Other members may want to chime in and share their experience but I don't remember anyone that tapered off in 5 weeks. From my standpoint that would be a miracle.

Is your doctor a rheumatologist or have you been diagnosed by a rheumatologist?

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No, my doctor is an internist. He did not know I was abruptly getting off prednisone. I was on it do to pain from breaking my collarbone, tearing my rotator cuff and severe nerve damage. Had to wait 5 mos for surgery. Kept taking it after surgery which was 1-22-20. I got off on my own. Stupidly. I had not one ache or pain ever until three days after I got off prednisone. The pain became so bad I had to call my doctor so he started me on a tapering off schedule of prednisone. But for only five weeks and I agree with you I probably should’ve taken almost a year to taper. I have no concerns this is PMR because all of the pain started three days after I got off prednisone. I have read all the post here and I’m so thankful you got back with me. Glad to know how to participate. That way I don’t have to bother you! I appreciate you so much.

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P.S. John, What group do I join?

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@jnebrig

No, my doctor is an internist. He did not know I was abruptly getting off prednisone. I was on it do to pain from breaking my collarbone, tearing my rotator cuff and severe nerve damage. Had to wait 5 mos for surgery. Kept taking it after surgery which was 1-22-20. I got off on my own. Stupidly. I had not one ache or pain ever until three days after I got off prednisone. The pain became so bad I had to call my doctor so he started me on a tapering off schedule of prednisone. But for only five weeks and I agree with you I probably should’ve taken almost a year to taper. I have no concerns this is PMR because all of the pain started three days after I got off prednisone. I have read all the post here and I’m so thankful you got back with me. Glad to know how to participate. That way I don’t have to bother you! I appreciate you so much.

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Hi Judy @jnebrig, It's no bother at all. Sorry I assumed you had PMR 🙂 You may want to search the list of discussions for a specific topic to find others with similar symptoms. You just have to scroll to the top of the screen and click Mayo Clinic Connect which is a link to take you to your home screen on Connect. Then you can search the discussions for a topic to see if there are existing discussions or you can start a new discussion. You can also use the search at the top of the screen to search all of Connect.

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@jnebrig

P.S. John, What group do I join?

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You can join any group you want to follow. I would click on the Tips on How to Use the Site on the upper right part of the window and you will be off to the races 🙂

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@johnbishop

Hello Judy @jnebrig, Welcome to Connect. I thought I would answer your private message in this discussion on Tapering off of Prednisone so that you can meet other members with similar questions and learn what other members have shared. If you scroll to the bottom of this email notification and click on the VIEW & REPLY button it will take you to this post in the discussion. Then you can click the REPLY button under any post to reply to a member or click the POST COMMENT button at the bottom of the discussion to ask a new question from members.

You mentioned your doctor had you on prednisone for a year and only tapered down for 5 weeks. You said you abruptly stopped taking prednisone if I understood your private message. If your diagnosis is PMR I am not sure why a doctor would say it's OK to just stop taking prednisone. Each of us are different but the name of the game when trying to get off of prednisone is to taper down slowly and only when the pain is under control or at an acceptable level for you. It took me 3 and half years to taper off of prednisone for my first occurrence of PMR. The last six months I went back and forth between 1mg and 1/2mg until I could finally stop taking prednisone with only minor aches and pain in the morning. That would gradually get better as the day went on.

You said your pain is from both shoulders to elbows and both hips and back to your knees, and you are stiff in morning for 45 minutes but have aches 24/7. You also said it's hard to sleep at night due to aches and it sounds like PMR but you are certain it’s just getting off prednisone. You mentioned being off prednisone since May 25th and you see your doctor in 2 weeks but would like to hear from members on their thoughts.

To me that sounds like a fairly good description of PMR. Tapering from 20mg to off of prednisone in 5 weeks would be a challenge for anyone that has PMR. Other members may want to chime in and share their experience but I don't remember anyone that tapered off in 5 weeks. From my standpoint that would be a miracle.

Is your doctor a rheumatologist or have you been diagnosed by a rheumatologist?

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from Mimosa:
I have been taking prednisone for seven years only 10 mg a day, Well maybe that wasn't enough, because my C-reactive proteen was always elevated. I told the doctor I was going to decease the dose, One mg a month , she agreed. I was fine untill I reached 6 mg. then the pain was constant. She prescribed: 5 mg prenisone daily and 15 mg of methotrexate once a week .It is helpful for mow. Coping with 95 degree temperature plus the S.Florida humidity is enough to sicken anyone.

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Sorry about the heat. We also are suffering in New England. We are not used to this.

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@mimosa

from Mimosa:
I have been taking prednisone for seven years only 10 mg a day, Well maybe that wasn't enough, because my C-reactive proteen was always elevated. I told the doctor I was going to decease the dose, One mg a month , she agreed. I was fine untill I reached 6 mg. then the pain was constant. She prescribed: 5 mg prenisone daily and 15 mg of methotrexate once a week .It is helpful for mow. Coping with 95 degree temperature plus the S.Florida humidity is enough to sicken anyone.

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Mimosa, what type pain do you have? It sounds like you’ll be tapering for a LONG time! I tapered off may 25th and my pain is unbearable. Wonder how long this will last? I’m hoping to rebuild my adrenal gland back up but doesn’t look promising.

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