1. < Polymyalgia Rheumatica (PMR)

Post prednisone

Posted by shannonjp @shannonjp, Feb 24 5:26pm

Today marks the 24th day since I tapered to zero prednisone. I did my taper very slowly, dropping 0.5 mg per month since June of last year. From the time I reached 5 mg I started to experience some aches and stiffness which would last ~3 weeks but was mostly manageable with acetaminophen. I persevered because I have osteoporosis so I was very anxious to get off the prednisone.

Several days ago I realized that my aches, pains and discomfort were really diminishing. But I’ve also noticed a sense of fatigue and muscle weakness I didn’t have during my taper. I went down a step and felt like my knee was going to buckle. This despite the fact that walking has been my primary exercise throughout my 2 year bout of PMR. I’m hoping this is normal as my body continues to adjust to life without prednisone.

Has anyone who has tapered off of prednisone gone through something similar? Should I be worried or just continue to be patient?

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

joan7 | @joan7 | Mar 5 8:18am
In reply to @hunib33 "@joan7 Hi Joan. I don’t take ibuprofen and acetaminophen while I was on prednisone. I took..." + (show)
@hunib33

@joan7 Hi Joan. I don’t take ibuprofen and acetaminophen while I was on prednisone. I took them after I finished tapering, because that’s when more pain kicked in.

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Thank you for the info! I just contacted my doctor at the end of last week and she told me we are going to be tapering really slow since I had such severe pain going down from 7.5 to 5 mgs of Prednisone. I'm glad she agreed because I never want to go through that again in this life.

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emo | @emo | Mar 5 9:21am
In reply to @joan7 "That makes sense. I'm on Plavix and 81 mg Aspirin already. Thank you for clarifying this..." + (show)
@joan7

That makes sense. I'm on Plavix and 81 mg Aspirin already. Thank you for clarifying this information!

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You’re welcome! My dad is also on Plavix. I wish sometimes he could have more than acetaminophen because it seems to only make him groggy of all things, but alas it’s probably too much a risk.

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daenika87 | @daenika87 | Mar 13 4:37pm

I FINALLY DID IT! My last dose of prednisone was on Sunday, 3/10/24. YIPPEE! I was diagnosed with PMR September of 2022 and have been trying to get off of Prednisone for the last three months. I have some hearing loss in my left ear from PMR and am now diagnosed with osteoporosis from the months of steroids, but I’m so grateful to be off of steroids and feeling pretty good. I also have fibromyalgia and it’s been difficult distinguishing between the two but I think that I have it figured out now. I started taking Liposomal Curcumin last week and it seems to be helping with the fibro pain. I can now get up without feeling like my legs aren’t going to hold me, what a relief! Fingers crossed for the future, but today I’m hopeful and thankful.
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2 replies
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Mar 13 6:40pm
In reply to @daenika87 "I FINALLY DID IT! My last dose of prednisone was on Sunday, 3/10/24. YIPPEE! I was..." + (show)
@daenika87

I FINALLY DID IT! My last dose of prednisone was on Sunday, 3/10/24. YIPPEE! I was diagnosed with PMR September of 2022 and have been trying to get off of Prednisone for the last three months. I have some hearing loss in my left ear from PMR and am now diagnosed with osteoporosis from the months of steroids, but I’m so grateful to be off of steroids and feeling pretty good. I also have fibromyalgia and it’s been difficult distinguishing between the two but I think that I have it figured out now. I started taking Liposomal Curcumin last week and it seems to be helping with the fibro pain. I can now get up without feeling like my legs aren’t going to hold me, what a relief! Fingers crossed for the future, but today I’m hopeful and thankful.

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Hi @daenika87, I moved you discussion and combined it with an existing discussion titled "Post prednisone" - https://connect.mayoclinic.org/discussion/post-prednisone/.

I did this so all of the other members talking about getting off of prednisone could see your success!

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1 reply
daenika87 | @daenika87 | Mar 13 6:45pm
In reply to @JustinMcClanahan "Hi @daenika87, I moved you discussion and combined it with an existing discussion titled "Post prednisone"..." + (show)
@JustinMcClanahan

Hi @daenika87, I moved you discussion and combined it with an existing discussion titled "Post prednisone" - https://connect.mayoclinic.org/discussion/post-prednisone/.

I did this so all of the other members talking about getting off of prednisone could see your success!

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Ok!

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daenika87 | @daenika87 | Mar 13 6:59pm

I had the muscle weakness and fatigue BEFORE I stopped prednisone. To be fair it’s only been a few days since stopping prednisone and I started taking liposomal curcumin the same time I stopped prednisone. The curcumin is definitely helping my aches and pains and weakness in my legs.

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emo | @emo | Mar 13 11:42pm
In reply to @daenika87 "I FINALLY DID IT! My last dose of prednisone was on Sunday, 3/10/24. YIPPEE! I was..." + (show)
@daenika87

I FINALLY DID IT! My last dose of prednisone was on Sunday, 3/10/24. YIPPEE! I was diagnosed with PMR September of 2022 and have been trying to get off of Prednisone for the last three months. I have some hearing loss in my left ear from PMR and am now diagnosed with osteoporosis from the months of steroids, but I’m so grateful to be off of steroids and feeling pretty good. I also have fibromyalgia and it’s been difficult distinguishing between the two but I think that I have it figured out now. I started taking Liposomal Curcumin last week and it seems to be helping with the fibro pain. I can now get up without feeling like my legs aren’t going to hold me, what a relief! Fingers crossed for the future, but today I’m hopeful and thankful.

Jump to this post

That’s amazing; congrats!!

What dosage of curcumin are you taking? I also have fibromyalgia and I tried it long ago and considered trying again since I’m not sure if I was taking a high enough dose.

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1 reply
hunib33 | @hunib33 | Mar 14 9:06am
In reply to @daenika87 "I FINALLY DID IT! My last dose of prednisone was on Sunday, 3/10/24. YIPPEE! I was..." + (show)
@daenika87

I FINALLY DID IT! My last dose of prednisone was on Sunday, 3/10/24. YIPPEE! I was diagnosed with PMR September of 2022 and have been trying to get off of Prednisone for the last three months. I have some hearing loss in my left ear from PMR and am now diagnosed with osteoporosis from the months of steroids, but I’m so grateful to be off of steroids and feeling pretty good. I also have fibromyalgia and it’s been difficult distinguishing between the two but I think that I have it figured out now. I started taking Liposomal Curcumin last week and it seems to be helping with the fibro pain. I can now get up without feeling like my legs aren’t going to hold me, what a relief! Fingers crossed for the future, but today I’m hopeful and thankful.

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I’m soooo happy for you. Isn’t it the best feeling? You did it congratulations 🤗

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daenika87 | @daenika87 | Mar 14 1:56pm
In reply to @emo "That’s amazing; congrats!! What dosage of curcumin are you taking? I also have fibromyalgia and I..." + (show)
@emo

That’s amazing; congrats!!

What dosage of curcumin are you taking? I also have fibromyalgia and I tried it long ago and considered trying again since I’m not sure if I was taking a high enough dose.

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I’m sending a picture of what I’m taking. You can purchase it on Amazon.

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shannonjp | @shannonjp | Mar 31 2:08pm

Two month update. My improvement has continued slowly. At 5 weeks I started waking up stiff but not overly painful. My back and neck (arthritis & degenerative discs) continued to be the focus of my discomfort.

At 6 weeks even that discomfort lessened but then I noticed “fatigue” in my thighs and knees. After about a mile of walking my legs would feel as if I’d gone on a 10 mile hike. I also had trouble getting up off the floor.

Now at 8 weeks I’m still improving. Most days I don’t have to take any pain meds and I feel less of the fatigue and achiness. Overall I’m just ecstatic to be off the prednisone.

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