Hi everyone 
So I’m not on continuous steroids but I’ve had 7 courses of steroids so far since January (some longer than others). And I’m getting so sick of the side effects. I’ve gained a lot of weight due to the steroids which I think is what’s getting me down the most. Has anyone got any tips of how to control appetite while on pred? Or lose pred weight? Or just general steroid side effects advice.
Thank you so much
Hi sorry to hear your alot of steroids, I can't get off steroids at mo eiether been on loads everytime I lower like consultant says I can't breath go back on thrm. My asthma was severe before had covid now been off work 9 weeks. Think need to go on lower dose to see if that help, doc says it's down to consultant hsve you tried that?
I have been on steroids for over 40 years but still struggle with my weight.My advice would be
Try going on a low maintenance dose.
Set yourself a realistic weight loss plan and gradually work towards it.
Substitute quick satisfying foods such a chocolate for long lasting such as bananas.
Get a good friend to encourage you on your journey. I also got weighed by the nurse once a fortnight.
Don't be too hard on yourself or become too fixated on weight because it makes things worse.
Hope that helps.
Over time I put too much weight on, to the point it was making my asthma worse - a bit of a vicious circle, given that increasing my meds would also increase my weight. My asthma nurse referred me to a NHS health and well-being coach. That was a year ago and it's been the best thing ever. I've lost 4 stone to date and continue on my journey. I've achieved personal medication goals and I reckon it will take another year to get where I need to be in terms of asthma and blood pressure meds. My solo appointments have progressed to group meet ups, supervised by the H&W coach and we have our own WhatsApp group in order to support each other. Everyone is on a low carb eating plan and I'm also doing intermittent fasting (just 2 meals a day). If you want to know a little more about the services of health and well-being coaches then this short film explains their role in supporting primary healthcare services: youtu.be/RV0ZfJdsHIk
Hi , I was on pred continuously for 5 years it eventually shut down my adrenal gland so now I’m steroid dependent ... so I can never come off .. I exercise regularly, do a min of 10,000 steps per day , eat healthy drink loads of water ..
You have my sympathy, it’s horrible being on steroids.
I’ve only been on (and off - weaning is a nightmare!) the steroids for a couple of months, I suppose 4 courses maybe 🤔 and feel lousy all the time. It’s not even as if I can breathe that well while I’m on them either. Maybe I’m one of these people who don’t react well to them.
Sorry I’m not being much help, but understand how difficult it is. My appetite is changeable. Last week I didn’t feel like eating much and this week I just want comfort food. I think to myself that I’ll just get through each day and when I feel better I’ll feel mentally and physically stronger and more able to sort out my unhealthy eating habits. 🤦🏻♀️.
Be kind to yourself. 🤗 Rest, eat if you need to and know when you feel stronger you’ll be in a better position to deal with any weight gain. Hope you feel better soon x
I found it nearly impossible to lose weight on steroids, b.c. aerobic exercise causes airway constriction due to asthma (exercise-induced asthma, EIA is common among asthmatics), which is why I take the steroids in the first place. The EIA symptoms happen despite all the rescue inhalers etc., and they are quite uncomfortable, so I am generally afraid of exercise now. To lose weight, I found that I need to exercise at least 30 min a day, and burn 300+ kcal per session. When one is on steroids, it is difficult to push such numbers (and I used to be able bike for 5 hrs and burn 5000kcal per day before asthma).
I have only recently started making progress in losing weight (about 1 kilo per month) after I rigged a turbo-charged CPAP machine that blows clean, humidified, pre-warmed air at 200lpm. I couple that air to a face mask, and with that I can sustain good-intensity exercise w/o feeling sick afterwards. I use a bike trainer. I also manage to do 30 min outdoor exercise on weekends, but it's much less intense than what I can do on the bike trainer with the turbo-CPAP. I do not know if I can lose all the extra 20 kilo while on pred, but at least I can get the endorphin high.
My consultant has started me on the pred taper and managed to get me down to 5 mg/day. The cortisol levels seem to be going up, so looks like I did not screw myself up totally after nearly 2 years on 10-20 mg/day.
I am weening off prediselone at the moment and can see my face and body back to normal I am having a lot of muscle pain in my legs especially but another six weeks I should be off of them down to 1mg tomorrow
I've lost weight since the steroids. I eat very little processed food, and cut out dairy for awhile. That takes the weight off. I am now partially back on dairy. Good luck!
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