Steroids and weight

I have been on steroids for 3 years now and have put on two stone in weight. I have weaned the steroids down to 5 mg per day, but still have no weight loss. I swim and walk so I do exercise. My Gp has prescribed exercise for's a very good idea but the fatigue I have makes things a bit complicated. I will do the exercise because before I was diagnosed I was very gym active and look at my diet as well to see if I can get some results.

I am gluten free and some days I cannot eat due to nausea from the AIH/PBC but am determined to do this for my highest possible good but how can I do slimming world when there is far too much food lol.

love and light x

4 Replies

  • Hi,

    I am exactly the same! Three years of steroids and two more stone, I am also down to 5mg Pred but cannot lose any weight. I do have great fatigue and spend most afternoons in bed so I expect that isn't helping!

    I hardly eat anything at all and very little sugar but cannot tolerate much protein at all due to pancreas problems.

    I do have other autoimmune conditions, Sjogrens and possible Lupus which maybe make it harder to get rid of the weight but I keep hoping to get down the steroids further.

    Sorry not to be of much help, just a mutual moan with you about this darned weight and having to keep buying larger clothes. The loft is full of older clothes waiting till I am thin again!!

  • You are so unfortunate. I was only on steroids for 18 months (touch wood) so fat I'm okay, urso and imuran seem to work. Have osteoporosis so they wanted me off the steroids asap. Very lucky I didn't gain weight. Stayed around the 10 stone mark which is fine for me. Found though that I couldn't lose a thing no matter how I tried. Still find it very difficult to lose the couple of lbs put on over Xmas etc. On the plus side I seem to be able to eat quite a bit without gaining. I walk a lot. I don't know what the answer is or why we are all so different!

  • Hi conniefused, I understand the fatigue can be such a huge impact on this, but I have learned from doing a small activity per day or spread throughout the day actually helps with this. Do ten minutes then rest. Its amazing how it boosts your feel good factor. I managed to walk for nearly ten miles at the weekend, and although I ached more than normal, I felt a sense of achievement. Good luck.

    If you are looking for further information with regards to exercise or diet, if you are a member of the PBC foundation, they will be only to happy to help with any queries or have a read of the compendium.

    hope this helps


  • Hi, I've been taking Budesonide for my PBC/AIH now for almost four years and the weight has crept on. Ive been taking the middle dose of 6mg daily for some time now but have been told I may have to go to the max dose of 9mg again depending on recent blood tests. So I have to fight against this weight gain as it's making me tired and miserable - it's been really hard but I've started to shift a few pounds by cutting out carbs and fats as much as possible. I'm going to slimming world group just for the weighing in and being part of a weight loss group but not following their diet plan (they don't need to know). Gradually increasing my exercise and getting my mind in the healthy zone. It's so very easy to feel too tired and too fed up to actually plan healthy meals. I watched the video 'fat, tired and nearly dead' and that gave me a boost - not that I would embark on something so extreme but it did give me a kick up the proverbial - an incentive. Long term steroid use is doing its job but also beginning to severely affect me - and although Budesonide is not as systemic as prednisone, it's still a steroid and I'm getting swollen and hairy, thin dry skin and purpura marks on my skin especially arms, high blood pressure and headaches. I wish there was a slimming group for people on medication or autoimmune diseases. So lets try to motivate each other to lose weight and get fitter!

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