Has anyone else gained weight while taking steroids?

[Yourinmyspot]

I’ve been on Prednisolone since the beginning of March so nearly six months and I’ve gained almost a stone in weight since then. I’ve not been on a particularly high dose was 30mg for four weeks, then 20mg for four weeks and I’m now on 15mg as when I dropped to 10mg my condition flared up. I’m genuinely not eating anymore than normal my weight had been stable for years. I still run twice a week but am finding it increasingly hard, as some other medication I’m on makes me tired and anaemic.

If you’ve gained weight while taking steroids have you managed to lose it when you stopped them.

It’s very, very common. Really normal in fact. I have Addisons disease and take steroids life long for it and I’m an advisor in an adrenal insufficiency group and we have almost everyone complaining they’ve put on weight on the steroids - and in theory we shouldn’t be because we’re only taking a small replacement dose (around 3-4mg pred or 20mg hydrocortisone) for cortisol replacement (we don’t make cortisol). So if you are talking pred for anti inflammatory purposes at a higher dose it is going to make you pile on weight, but it will usually come off when you stop them. Make sure you taper down slowly and don’t suddenly stop them. If you have been on them that length of time you need to be aware of the risks of developing secondary adrenal insufficiency.

Thank you, that is helpful to know. I will be careful tapering off when the time comes. I had Covid in July and dermatology advised me to stop taking them for a week, I pointed out I’d been on them a while and didn’t think it would be a good idea to suddenly stop.

A close friend was recently diagnosed with this! She takes pred after a really tough time with HC. Any top tips for newbies to it, she’s had to go into hospital about 20 times this year, super low blood pressure, sickness and she says just wiped out. She’s waiting on an endocrinologist follow up, hopefully soon!

I’m sorry to hear this. It can be really difficult when you’re first diagnosed as unfortunately we have no way of monitoring our own cortisol levels (unlike diabetics with their little devices etc) so a lot of it comes from learning your own low cortisol signals over time and knowing when to updose. One of the most important things no one seems to tell us is to take the first dose of the day around 30 mins before getting out of bed - people without adrenal issues wake up with a full “tank” of cortisol and we are trying to replicate that. If you get up before you’ve done this it’s like trying to run on empty and puts a stress on your body. Also, even those on pred (as opposed to hydrocortisone) usually do better splitting their doses 2-3 times a day - even though endocrinologists usually say just take it once a day - because pred for adrenal replacement purposes lasts 6/8 hours. (Different from taking it for anti inflammatory purposes at much higher doses).

This is a great resource for someone newly diagnosed-

https://www.addisonsdisease.org.uk/Handlers/Download.ashx?IDMF=2e6f4eb2-6661-4a17-8d06-3fdec2b1e2aa&fbclid=IwdGRleAQyZkNleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEert86m23O9d15tpa-3tvFWU1tc9jGp7G8XEQZ08zn4qiXFml7uD5MBMbv9Ng_aem_f-RigQ_GlSmruZI0uK8-NQ

Also, join the Facebook group - UK Addisons Disease and AI info and support group. There are others but this one is well moderated and private - we have over 9K members now.

Lot of people.

Amazing, thanks so much for taking the time to give all this info.

Hi, sorry for your distress :( I have been on red 30mg daily for three years and am just tapering off and onto doxycycline instead. It undid a lot of time, effort and money when on Mounjaro and has turned me into an irritable, grumpy shit - god bless my wife for sticking with me. Also gave me osteopenia (gp didn't put me on calcium supplements and omeperazole for the first two years sadly).

It's a really effective med - but the side effects are crap.

I've taken steroids in the past. Of course it's not the drug that makes you gain weight it's the fact that they increase appetite.
My worst experience was with dexamethasone. I took it during breast cancer treatment and also when in hospital with covid. I often wonder if that's what people call "food noise" because it had the effect of making me think about food all the time. In fact I would wake in the night and fantasise about food. I didn't gain weight though because I was so ill.
I took pred for a couple of years. The tapering became harder as the dose diminished.

Consider asking for a bone scan if you are over 50 as steroids are bad for the bones.

It would be quite unusual not to put on weight.