Patient Comments: Steroid Drug Withdrawal -Symptoms

What symptoms did you experience with steroid drug withdrawal?

Comment from: , 65-74 Female (Patient) Published: June 10

I had been on prednisone for 8 months for temporal arteritis. My dosage began with 60 mg a day for 2 months and my doctor then started tapering down 10 mg a month. I am currently on 5 mg a day. Each time about a week after my dosage was lowered, I experience weakness, fatigue, nausea, anxiety, headache and feeling like I had the flu. After about a week, my symptoms get better but never actually go away.

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Comment from: pixie, 45-54 Female (Patient) Published: May 30

I've been on 50 mg of prednisolone daily for almost four weeks. My normal doctor is on holiday and the stand-in refused to give me any more. I'm getting side effects, wonder if this is because of the sudden stopping. I have headaches, shakes, terrible spots that bleed, diarrhea, urinary problems, stiff aching joints, and flu like symptoms.

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Comment from: Iamtwo2blessed, 35-44 Female (Patient) Published: May 23

I have been taking prednisone for 18 years nonstop. The minimum dose being 20 mg and the maximum 80 mg. The side effects that I experience are slow healing, thin skin, heavy clotty menstrual cycles, easy and frequent bruising, frequent and painful muscle spasms, severe heart burn and acid reflux, and stomach cramps and high blood sugars. Occasionally my doctor tries to taper me off but is not successful. The symptoms I experience during tapering are headaches, wheezing, shortness of breath, acne, more painful muscle spasms, change in menstrual cycle but still clotty, weakness, nausea, stomach aches, change in blood sugars (low blood sugars), low blood pressure, and feeling fatigue.

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Comment from: eliza, 45-54 Female (Patient) Published: April 25

I was diagnosed with myasthenia gravis, a rare chronic autoimmune disease in Jan 2012. I was put on prednisolone and gradually went up to 100 mg every other day. Unfortunately even while on the steroids I went into a crisis after having a thymoma removed (a tumor on the thymus gland which caused the illness). After my operation I was put on 50 mg of steroids daily. When I went into remission during 2013, I gradually tapered the dose down by 5 mg a month but when I tried to reduce to under 8 mg I started to get severe withdrawal symptoms of chronic stiffness and muscle pain so I stayed on 8 mg for another few months. My consultant prescribed me a strong anti-inflammatory drug which really helped. Unfortunately when trying to reduce again the stiffness returned with muscle pain, fatigue, and nausea. I am presently on 1 mg a day and planning to stop soon as I feel this is the only way my adrenal glands will kick in and produce the cortisol needed for my body to function again but I have no idea how long this will take. I am willing to endure the symptoms just to be finally off prednisolone with its damaging effects to my body causing tremendous weight gain, osteopenia, shingles and hair loss.

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Comment from: waterrat, 65-74 Female (Patient) Published: February 20

After 1 1/2 years of prednisone in relatively high doses to treat hypersensitivity pneumonitis, I withdrew from it over a period of three months. Now, I am experiencing severe pain in knees, ankles, hips and back. Some seems muscular and it is occasionally so severe that I can hardly move. This has continued without improvement and perhaps with even an increase over the past ten weeks. At the moment, I am trying to treat it with Tylenol extra strength but it doesn"t do a great job. I"m now being referred to a rheumatologist but will have to wait several weeks for a consult. This seriously 'cramps' my style.

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Comment from: Payten, 55-64 Female (Patient) Published: February 20

I am a 58 year old female. I have SLE (systemic lupus erythematosus), fibromyalgia, CKD (chronic kidney disease) among other things not worth mentioning. After not having had to take prednisone for a few years my lupus flared and I became very ill with chronic pericarditis. I was placed on 50 mg. of prednisone for several months. My rheumatologist started tapering me down very cautiously. Shortly after, I went into a very bad steroid withdrawal. The pain was debilitating. She increased it again and waited some time before attempting to lower it further. Gradually we got it down to 6 mg when I went into withdrawal again. The pain is unbearable and widespread. I am so exhausted and weak, I have not been able to get out of bed. I consider myself to have a high pain tolerance but even still when Tylenol 3s are not working, I reluctantly have taken 10 mg of morphine. The doctor has increased it to 7.5 mg to see if that will help. It is a challenging issue to deal with, to say the very least, but. I remind myself, there are always people worse off.

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