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: Concerned, 65-74 Female (Patient) Published: July 26

It is 3:30 in the morning. I thought I was taking hydroxyzine 50 mg every 6 hours. I was also given prednisone. I have had extreme itching and rash and no sleep. I don't know why I didn't recheck the bottle. Somehow it got switched. The first two days I did take the hydroxyzine. I have not slept all week. I thought I was today going to lower the hydroxyzine so I only took one of the pills (thinking I was taking one hydroxyzine). I started not feeling well so at 3:00 I took one more. After I swallowed it I thought I would look at the container to see if any precautions were on the labels. That was when I saw it was prednisone. I am so upset. I am planning a month's trip to Eastern Europe in August and can't get any shots, can't be near illness (airplanes), plus tourists. I'm not sure what to do. It's the middle of the night and I'm wide awake. I average two hours maximum a day. I will call the doctor tomorrow but wanted to share.

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Steroid Drug Withdrawal - Treatment Question: Please describe the treatment you received for steroid drug withdrawal.

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