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Why did I need to stop taking prednisone?

I had been taking prednisone for fifty years. A year and a half ago my doctor stopped it. He took me off way too fast. I thought I would die.

I lost 60lbs and so tired I did not want to move.

I was doing great while on prednisone with Remicade, but now I feel so bad I just want back on prednisone.

  1. Hi there! Thanks for your question. I'm sorry that you finally found something that seemed to be working but now you can't use it.

    The truth is that medication impacts everyone a little differently. Have you tried asking your doctor why they stopped you from using prednisone? Their reasoning will be unique to your personal medical history.

    We aren't allowed to give medical advice over the Internet, for your safety. It's possible other community members have experienced something similar and can share their unique personal experiences. If so, that could offer a potential explanation. However, the answer will ultimately be something your doctor will have to provide.

    Thank you so much for your question. If you have others, please share!

    -Reggie ( Team Member)

    1. Long term prednisone can eventually affect your bones. That is what I was told when I asked to have a low daily dose. Good luck!

      1. Yes, it should always be prescribed with something such as AdCal (in the UK, anyway) in an attempt to protect the bones. Pred prevents the body from absorbing Calcium properly, so it can lead to osteoporosis, weak teeth etc.

        ~ Sahara (Team member)

    2. I only manage 2 months of steroids and i'm weaned off them how did you manage 50 yrs unbelievable.

      1. yes, after a couple of years constantly on and off them, my IBD team said they didn't want me to have anymore because of the long term effects.

        ~ Sahara (Team member)

    3. They give life yet also take it away IBD is a horrible world.

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