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Any side effects after going off prednisone slowly?

Posted by lindaadel @lindaadel, Nov 11, 2023

After being on prednisone for seven months starting at 10 mg and going down every three weeks I have taken my last prednisone pill today that was 1 mg. Should I expect any withdrawal side effects etc.?

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aisp3b | @aisp3b | Jul 13 9:55am
In reply to @aisp3b "@eby I was Prednisone for 1.5 years. I ended 6 weeks ago. My blood work is..." + (show)
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@eby I was Prednisone for 1.5 years. I ended 6 weeks ago. My blood work is very good. I was doing pretty good but then all the aches and pains started and they are not PMR pains. I have a lot lower back pain and hip pain and sometime buttocks pain. I have read that ending steroids is followed by steroid withdrawal symptoms and it can take a long time for those symptoms to disappear. Here is what I read... "Prednisone can significantly impact the gluteal muscles and hips through steroid myopathy (muscle wasting) and avascular necrosis (AVN) (bone cell death in the hip joint). These side effects generally present as progressive weakness, difficulty rising from chairs, and deep groin or hip pain. The gluteal (buttock) and thigh muscles are often the first and most severely affected proximal muscles". Google your symptoms clarifying end of steroid use.

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@aisp3b I forgot to mention that Extra Strength Tylenol helps tremendously with the pain. I actually try to take just 1 pill as a dose instead of the prescribed 2 pill dose that and usually that works wonders.

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aisp3b | @aisp3b | Jul 13 10:03am
In reply to @lungranger77 "Hi Pam. LOL. Thanks for slipping in some humor about feeling like superwoman. A little laughter..." + (show)
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Hi Pam. LOL. Thanks for slipping in some humor about feeling like superwoman. A little laughter now and then is good medicine. I remember my first few days on 20mg. It started off great. I could lift my arms and pain was gone in 5hrs. About a week on 20mg I went from superman to exacerbation of hx of anxiety disorder. Doc put me down to 15mg. Didn't work. Put me right back on 20mg. was there for a month and a half. Then weaning after that went relatively smooth. What a ride. After a while, I think to some extent we all get to know how our body is going to handle the Prednisone along with the nasty detox effects. I'm 71 and realize most of us have had to make lifestyle changes. Had to downsize my woodcraft/ craft show activities. Too physically strenuous. One thing I found out with the prednisone is that it's masking any and all pain associated with my L-4 L-5 lower back injury. Not a peep since I've been on Prednisone. Big warning for me when I put the superman cape on. Wish you the best.

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@lungranger77 I can relate to your statement about L4 L5 doing great. I had zero discomfort while on steroids. I am off the steroids now for 6 weeks. The pain has resurfaced and more. I'm not sure if it is totally my lower back or Gluteal Tendinopathy. The 2 conditions seem to merge. It's hard to know which one it is. In 2020 I had a laminectomy on L5. I am waiting it out to see if it continues then I will seek out an orthopedic surgeon (spine or hip). I am 73 years old.

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aisp3b | @aisp3b | Jul 13 10:15am
In reply to @janb62 "@eby My experience being off prednisone is very similar to yours. I was on for 1..." + (show)
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@eby
My experience being off prednisone is very similar to yours. I was on for 1 year for GCA starting at 60 mg. Have been off for 3 months. Not exactly pain but stiffness that limits mobility. I also have difficulty getting in and out of cars, getting up after sitting too long and generally feel weak. My doctor tells me this will go away and patience is key. I guess I'm too anxious to get my life back! MD also said the higher the dose and the length of time on prednisone, the longer it takes. The thing is, while on prednisone I was doing aerobics alternating with weights, determined to keep what muscle I had. Felt no pain then!

Keep the faith that we will eventually feel like ourselves again.

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@janb62 I am having new discomforts after prednisone use ending 6 weeks ago.. I had PMR. I felt great, no back pain, nothing. I now have back and hip pain. What I am reading is that this can be Gluteal Tendinopathy which is caused by long term steroid use. It has your symptoms. Google this, "long term steroids and Gluteal Tendinopathy". I also read that it can take a long time for all the after effects of long term steroid use can take time to disappear. I am using extra Strength Tylenol and it is helping so much. Try just 1 pill before upping to the recommended dose of 2 pills.

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pdxmac | @pdxmac | Jul 13 10:35am

I'm not quite off steroids but very close (down to 1mg). Like many people, I'm finding this last little bit the hardest. I have found an intensive program of PT has really helped with all the joints. I had to seek and self-pay PT that was more extensive, but it has really paid dividends.

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janb62 | @janb62 | Jul 13 1:16pm
In reply to @aisp3b "@janb62 I am having new discomforts after prednisone use ending 6 weeks ago.. I had PMR...." + (show)
Profile picture for aisp3b @aisp3b

@janb62 I am having new discomforts after prednisone use ending 6 weeks ago.. I had PMR. I felt great, no back pain, nothing. I now have back and hip pain. What I am reading is that this can be Gluteal Tendinopathy which is caused by long term steroid use. It has your symptoms. Google this, "long term steroids and Gluteal Tendinopathy". I also read that it can take a long time for all the after effects of long term steroid use can take time to disappear. I am using extra Strength Tylenol and it is helping so much. Try just 1 pill before upping to the recommended dose of 2 pills.

Jump to this post

@aisp3b
Thank you for that information. I will google it. Yes, I have aches and pains in shoulders, hips and back I never had before and a lot of muscle wasting. I have an upcoming PT appointment where I hope to regain strength but had to wait a long time for appointment. In the meantime there are some good therapists on you tube for those over 50 or 60 and I feel better after doing them. I have taken an occasional extra strenght Tylenol because it's not advisable to use it with alcohol. And right or wrong, I find that glass of wine in the late afternoon helps a lot and makes me happy! 😁
Hope your symptoms improve soon.

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tweetypie13 | @tweetypie13 | Jul 13 7:41pm
In reply to @janb62 "@aisp3b Thank you for that information. I will google it. Yes, I have aches and pains..." + (show)
Profile picture for janb62 @janb62

@aisp3b
Thank you for that information. I will google it. Yes, I have aches and pains in shoulders, hips and back I never had before and a lot of muscle wasting. I have an upcoming PT appointment where I hope to regain strength but had to wait a long time for appointment. In the meantime there are some good therapists on you tube for those over 50 or 60 and I feel better after doing them. I have taken an occasional extra strenght Tylenol because it's not advisable to use it with alcohol. And right or wrong, I find that glass of wine in the late afternoon helps a lot and makes me happy! 😁
Hope your symptoms improve soon.

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@janb62 also Tylenol for ARTHRITIS works great too

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gilbert56 | @gilbert56 | Jul 13 10:36pm
In reply to @eby "I WAS ON PREDNISONE FOR TWO YEARS started at 15 mg AND AM OFF NOW 6..." + (show)
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I WAS ON PREDNISONE FOR TWO YEARS started at 15 mg AND AM OFF NOW 6 WEEKS.
Very stiff fingers and pain on one hand and so so pain on other hand' this subsides during the day.; fatigue,
every day need to rest by afternoon. Difficult getting in and out of my car and standing after sitting for some time; subsides after walking a bit or should I say waddling a bit; also a general "not well" feeling .
Blood tests are ok and cortisol in normal range. I am 74 years , I do try to exercise 3 times a week...
anyone else have the same experience? When will this pass...? will we every feel well?

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@eby I have been off Prednisone for 3 weeks yesterday. Tapering down( I was on it a year), my hip started hurting. my left hand aching periodically. Today, I was in a lot of pain all over, including my hip. I took 3 ibuprophen, and muscle pain got better, but hip still hurts, off and on. I did physical exertion today, and can never do much without muscle aches somewhere. I have an appt. with Rheumatologist tomorrow. From what I understand , hip pain can be caused by coming-off prednisone. I also, have been having trouble walking, and climbing stairs. Hopefully, I can get some good instruction tomorrow. Prayers for everyone suffering from this….

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gilbert56 | @gilbert56 | Jul 13 10:37pm
In reply to @janb62 "@aisp3b Thank you for that information. I will google it. Yes, I have aches and pains..." + (show)
Profile picture for janb62 @janb62

@aisp3b
Thank you for that information. I will google it. Yes, I have aches and pains in shoulders, hips and back I never had before and a lot of muscle wasting. I have an upcoming PT appointment where I hope to regain strength but had to wait a long time for appointment. In the meantime there are some good therapists on you tube for those over 50 or 60 and I feel better after doing them. I have taken an occasional extra strenght Tylenol because it's not advisable to use it with alcohol. And right or wrong, I find that glass of wine in the late afternoon helps a lot and makes me happy! 😁
Hope your symptoms improve soon.

Jump to this post

@janb62 Coffee helps, too!

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gilbert56 | @gilbert56 | Jul 13 10:43pm

My hip pain has come back, and I have some difficulty with walking and climbing stairs. Also, left hand has been somewhat stiff and achy. I have found, in all this, that coffee helps( also prayers), and trying to keep active. Seeing rheumatologist tomorrow. I’ve been off prednisone for 3,weeks…

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