Patient Comments: Steroid Drug Withdrawal -Symptoms

What symptoms did you experience with steroid drug withdrawal?

Comment from: Jennifer, 35-44 Female (Patient) Published: April 21

I began steroid treatment for an eye problem and unfortunately it is the only drug to effectively treat the issue. I developed steroid mania within days of beginning a 40 mg dose and steroid psychosis within a week. I was eventually given lithium to treat the mental issues and have stabilized. I'd stop taking it tomorrow if I could but I am starting to think the doctors will never take me off it completely as they cannot find an effective substitute without the ridiculous side effects.

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Comment from: Sophie, 55-64 Female (Patient) Published: March 31

I have rheumatoid arthritis. I have been on prednisone for 12 years, as I couldn't take other medications due to a dangerously low white count. I had also previously take dose packs for my asthma until Advair became available. Now that my white count is being controlled by Neulasta, I am on Humira. I began tapering from 60 to 50 to 40 and so on. Right now I am on 5, 1/2 tablet morning and evening. My knees hurt more and I have some headaches, but in 30 some years of using prednisone, I've had no other trouble.

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Comment from: alegrdl, 45-54 Female (Patient) Published: August 05

I also am on prednisone 5 mg, for rheumatoid arthritis. I have gained a lot of weight, it's not from so much eating; it is the medicine that has me swollen. I decided to take myself off the steroid too, and I'm also going through withdrawals. I have bad headaches and joint pain, what everyone is going through to detox from this medication. I'm tired of feeling like this, and I refuse to go back on it. I also still exercise every day and after all the work I have done I still look chubby. I need to feel better.

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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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