Patient Comments: Steroid Drug Withdrawal -Symptoms

What symptoms did you experience with steroid drug withdrawal?

Comment from: suzieQ, 65-74 Male (Caregiver) Published: April 19

My husband was on 4 mg of a steroid drug for 4 months due to spinal stenosis. He acted kind of hyper-euphoric at the beginning. Then he developed the moon face. He has been weaning off for the last 2 weeks and has been having a terrible time with many of the symptoms listed in this article including muscle weakness, tiring easily, light headedness, and now today, fever. I read here that they don't know how each dose effects different people. My husband has a very sensitive system and I will not allow any doctor to prescribe long term steroids in the future! This stuff is dangerous.

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Comment from: Preston, 55-64 Female (Patient) Published: April 12

Nine years ago I got a disease called neurocysticercosis. I had swelling of the spine and could not move my legs. I took 60 mg of prednisone for 3 months. Well, the doctor started to take me off and he ended up doing it too fast and I literally almost died. I got dehydrated, blood pressure dropped and was totally out of it. When my husband got me to the hospital the doctor said it isn't a matter or re-hydrating her, it is a case of keeping her alive. I was very lucky. They put me back on the prednisone and tapered slower. Now fast forward to this January. I ended up finding I have low cortisol. So they put me on hydrocortisone. It has been about two months and I began to have awful fatigue, severe headaches, and horrible nausea. I weaned off but still nauseous and extremely tired. I have decided I will never take these again!

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Comment from: millie, 65-74 Female (Patient) Published: March 29

I was on prednisone for two weeks; 40 mg for 5 days, 30 for 4 days, 20 for 3 days and 10 for two days. I was shaky and jittery with symptoms of steroid drug withdrawal for the whole 2 weeks. Now I have been off for 3 weeks and am still having the shakes, fatigue, light-headedness, and was having bad chest pains. I ended up in the emergency room, diagnosed with either bleeding ulcer or bad GERD. I have no energy, cannot walk for any length of time without being exhausted. I will never take that drug again and do not know why doctors ever prescribe it. I don't know how long this is going to last and am just really tired of it.

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Comment from: Jackie, 55-64 Female (Patient) Published: February 18

I have been taking hydrocortisone 10 mg for about a month. I got the flu on Sunday, for the 3rd time in 2 months, and stopped taking the hydrocortisone since I was sick. Then I read the label that said you are more prone to fight off infections. So I decided to stay off the hydrocortisone. Now I am still feeling extremely week and fatigued, and have a terrible cough. I am wondering if these are symptoms of not taking the hydrocortisone for 4 days, and if so how long the steroid withdrawal symptoms last. I am wondering if I should go back on the hydrocortisone and wean off or just continue to stay off of it.

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Comment from: Savedmylife, 45-54 Female (Patient) Published: February 08

I had a pituitary tumor however surgery couldn't remove it all so I had radiation. This killed all my hormones so I was put on prednisone. After 3 years, thank goodness I changed doctors, as my liver functions were above normal, sugar levels high, blood pressure high, cholesterol high, and gained about 60 pounds. Once I was healthy again he was weaning me off. But since I was on them for over 5 years he had to wean me off slowly. I have been off for 7 months and still feel it. I have had every symptom listed and still get fatigued. It has been a very long journey but I am so healthy now and I know eventually (I hope) I will get my energy back. When I hear the word steroids I just cringe. Stay healthy.

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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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