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How long can I be on steroids, really?
Many LEMS patients are on steroids for immunosupression. Some patients have been on steroids for years. My rheumatologist did not want me to continue IV Solumedrol due to the long term issues it could cause for my body. For those on long term steroid therapy, how long have you been on it? Has it caused any other issues for you?
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2 Replies
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I was on 40mg of prednisone a day for 18 months. I gained 40lbs, which I hear is low. I developed acid reflux which I’d here to stay. My vision took a turn for the worse. I’m told by my doctors I’m lucky. I didn’t lose any bone density or develop any ulcers. I did have moon face but thankfully that went away. Prednisone made me feel like my “old self”. No weakness no pain. But it’s side effects came quick. I’m off it. And now only use it add a last resort when I have a bad flare. I’m thankful I have it as an option. I’m also told that if my flare is more than my prednisone can handle I can call and go to the clinic and get an IV steroid.
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I think this question would be better to ask on the steroid forum.
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