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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?
Replies to "Hello Judy @jnebrig, Welcome to Connect. I thought I would answer your private message in this..."
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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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.