Patient Comments: Steroid Drug Withdrawal -Symptoms

What symptoms did you experience with steroid drug withdrawal?

Comment from: tq, 55-64 Female (Patient) Published: July 12

I have been on 5 mg of prednisone for about 5 years. I have ulcerative colitis and sacroiliitis along with diabetes. I am tapering down on prednisone and was doing fine until I hit 2.5 mg. At this point I am experiencing a lot of joint pain, my legs hurt badly and I had been walking for exercise, but now experience swelling in my knees and a great deal of pain in my shins and feet. I am also very tired and my stomach does hurt. I am afraid to go any lower because all of the symptoms may get worse. I don't know whether to go on and get off of it knowing that I will experience all of these symptoms. I am just very hesitant and it is affecting my quality of life. I have an appointment with my rheumatologist in a couple of weeks and will not go down any further until talking to him. I wonder if this is normal symptom of steroid drug withdrawal or if any of the diseases are flaring again.

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Comment from: rowdyirish1, 45-54 Male (Patient) Published: January 20

I was diagnosed with Crohn's disease five years ago and the symptoms were mild for the first four. After a very nasty flare up I went to the clinic and was initially prescribed 80 mg of prednisone tapering to 60 then 40, etc. It has been over a year now and I have bounced back and forth from 20 to 30 mg depending on the severity of symptoms. Every time I tried to get below 20 mg the symptoms became too severe to manage. Finally I was able to get approved for Humira and no longer needed the prednisone. The gastroenterologist told me that prednisone can shorten life expectancy which scared the daylights out of me. I told myself that I was going to get off of prednisone if it killed me. Well, it almost did! After losing faith in the doctor who prescribed the steroid I decided to taper off myself. I went from 20 to 15 with a little nausea and fatigue and then down to 10 with the same results. When I tried to drop from 10 to 5 I thought I was going to die. I experienced horrible fatigue, nausea, acid reflux, gas, headache, joint pain, muscle spasms, chills and fever. At the time I didn't put two and two together because I didn't have much trouble dropping from 20 mg to 10. That last five mg made all the difference in the world. Now I know why they say not to taper off of prednisone without a doctor to advise you. To think that I spent 7 days in agony because of my own stupidity makes it even worse. Trust me when I say you do not want to attempt this without medical supervision.

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Comment from: Lotsopain, 65-74 Female (Patient) Published: January 20

I was diagnosed with rheumatoid arthritis (RA) in 1992. I've been on prednisone on and off all this time. I do go off of it slowly but still get the withdrawal symptoms. Sometimes those pains are worse than the pain from the RA. The muscle soreness and weakness is horrible. I'm off now and am miserable. I'm so tempted to go back on one pill a day.

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Comment from: Spuds, 65-74 Female (Patient) Published: January 20

After 2 years on prednisone 10 mg I tapered off as suggested by the doctor. Now I am having muscle aches in arm and legs.

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Comment from: Tom, 65-74 Male (Patient) Published: January 20

I have a prior entry on steroid drug withdrawal, male patient on November 12. Now I am getting some muscle pains that ease during the day. It seems 1.5 mg was the tipping point. This morning (always do it on a Monday) I reduced it to 1 mg. I am going up the gym to do the weights and weight machines, immediately after this. I have muscular pain around shoulder/upper arms and vague elbow and knee joint pain early mornings. Lying in bed first thing in the morning, I feel some aching across the pelvis or hips. I wonder if it is because I need a new mattress or because it was wet and I sat in a chair all day Sunday or just old age being masked by prednisolone. It is annoying and only slightly incapacitating but like the rest of you, I could certainly do without it! Keep moving!

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Comment from: Dawn, 55-64 Female (Patient) Published: January 05

I was diagnosed with giant cell arteritis one year ago and started out on 40 mg of prednisone. I have been tapering down for months. I had one relapse at 20 mg, but now am down to 5 mg, and tomorrow I begin 4 mg for two weeks. I am decreasing by 1 mg every two weeks; very slowly but it seems to be okay this way for me. I do have withdrawal symptoms; lower legs hurting, sore knees, and fatigue, so I am anxious to get off the prednisone for good. I am hoping that all the side effects such as weight gain and the typical moon face, from using the drug, will go away as well once it is out of my system.

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