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Any side effects after going off prednisone slowly?
Polymyalgia Rheumatica (PMR) | Last Active: Jul 17 8:26am | Replies (49)Comment receiving replies
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?
Replies to "I WAS ON PREDNISONE FOR TWO YEARS started at 15 mg AND AM OFF NOW 6..."
@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.
@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.
@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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@eby I am 80yo…..2 1/2 yr journey with PMR, hoping to get off Kevzara “soon”.
Question, were you pain free when you stopped PRED?
That’s my key, to be pain free for a couple of weeks before tapper or stop.
As a supplement, I take Tylenol for ARTHRITIS, as directed , and it has been a savior before heavy exercise, or humidity.
In addition, assuming your cortisol/adrenals are fully recovered……what are you doing? Being laid up for so long is hard to bounce back. PMR has brought out the family osteoarthritis that was under the surface.
As I say, DON’T RUSH it to fall back again. (I tried and it did not work for me)