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: Jacobus, 65-74 Male (Patient) Published: March 08

Following a disastrous back surgery, the only effective treatment (even with narcotics) was direct corticosteroid injections bi-monthly into the spine and 'slathered' adjacent to nerve exits. This went on for half of a year before I became clinically severely depressed and also came down with MRSA in my bladder and skin. Perhaps this is an extreme but it should also be listed if anyone is receiving such injections.

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