losing weight

[artisam]

Hi all,

I know the usual gripe is about gaining weight on pred, and certainly the first time round I gained a huge amount which just wouldn’t shift. This time round the opposite seems to have happened! Initially I was thrilled - I’ve dropped 2 dress sizes and am back into my size 10 jeans ( smug😂). However, it’s not stopping and I’m starting to worry, I certainly don’t want to lose any more. I am currently down to 5mg pred and take 20mg lefluminide, which I am aware could cause weight loss. Should I be worried? Grateful for any input.

[PMRpro Ambassador]

I wish!!!!!! Does your doctor know how much weight you have lost? Such weight loss is usually a red flag and deserving of investigation especially since PMR is a symptom rather than the disease and some of the underlying causes can be nasty.

[artisam in reply to PMRpro]

Thank for the input. I am seeing rheumatologist next month, but may try to see my GP in the mean time if anyone will answer the phone!

[PMRpro Ambassador in reply to artisam]

Demand an urgent appointment - and say it is because of considerable unintended weight loss in a short time despite being on steroids. If a receptionist turns that down - complain to the practice manager.

[DorsetLady PMRGCAuk volunteer]

Any unexpected weight loss must be checked -so please make appointment with doctor.

[artisam in reply to DorsetLady]

Will certainly try to. Thank you.

[Pusph]

Hi, the same happened to me. I lost between 2 - 2.5 stone in a matter of months. I had all the usual tests - faecal tests, Gastroscopy, scans but nothing showed up. Once they'd been done the doctors didn't seem very concerned.

[artisam in reply to Pusph]

That’s interesting. Were you on lefluminide? I’m pretty sure that’s what’s causing it. Did the weight go back on again? I’m enjoying being back this size, but can’t afford to lose any more.

[Pusph in reply to artisam]

No 'just'! Prednisolone. It's just starting to go back on again now (diagnosed April 22) but that's partly I think because I'm eating anything even though the pred made me pre-diabetic! I felt like you - I couldn't afford to lose any more weight!

[artisam]

wow, that’s really strange. Well I hope your weight journey is successful - what a weird position to be in! Be careful though, you’ll kick yourself if too much goes back on🙄

[YorkieShowBreed]

I had the same thing happen to me. I went from a size 12 down to a size 4 While on Pred. doctor did everything to find out what had caused it but nothing came up. This all started in 2018. I have gone back up to an 8 now and I am free of PMR but I remember looking like a little elf for a while. Still on the no carbs pred diet because I like that I don’t get over weight. ❤️

[artisam in reply to YorkieShowBreed]

Gosh you must have been tiny! I am just the perfect weight now - the weight I have been trying to get back to for at least 2 years and now it has dropped of on a matter of months - crazy. I am otherwise well, apart from the pmr of course, and hoping to stay that way. I will still see a medic however as I do think it needs checking, but hoping it's just been a little miracle to compensate me for all that pain! Wishing you well.