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Original poster

Recovery from Cushings syndrome (caused by steroids) -any experience

17 replies

SweetSakura · 05/05/2023 23:13

I was put on a strong dose of steroids in an attempt to treat my automimmune condition (Myasthenia) but they have unfortunately made me very ill with Cushings instead . I'm.tapering down my dose off now in accordance with the directions of my specialist but would just love any advice or positive stories that I will one day look and feel better again. My face is pretty much unrecognisable now and I have gone up from a size 12 to a 16 in 6 months. Its just utterly awful and I feel so embarrassed and fed up. I'm not particularly vain but the physical changes are so dramatic.

OP posts:
LulooLemon · 05/05/2023 23:50

Poor you. I would suggest to really reduce your salt intake including salt in processed food (bread, breakfast cereal etc.). And as far as possible, have a really fresh natural diet - just fruit, veg, nuts, beans, fish, eggs, meat, dairy, all prepared at home (no ready meals).

As you taper down the steroids, the puffiness will disappear. Anything below 10mg per day is usually low enough.

Good luck.

Original poster
SweetSakura · 05/05/2023 23:53

I pretty much avoid anything processed etc and live on fruit.and veg, but its helpful to know that's going to help

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nodogz · 05/05/2023 23:57

I'd probably start on some therapy. High dose steroids ravaged my face and metabolism. No amount of clean eating and living ever restored me.

It's very sad, especially to be embarrassed and to feel you're shallow. But it really hurts especially when the world treats you better when you look better. A bit of therapy would have helped me get perspective and mourn the loss of my looks/status.

neilyoungismyhero · 06/05/2023 00:02

SweetSakura · 05/05/2023 23:13

I was put on a strong dose of steroids in an attempt to treat my automimmune condition (Myasthenia) but they have unfortunately made me very ill with Cushings instead . I'm.tapering down my dose off now in accordance with the directions of my specialist but would just love any advice or positive stories that I will one day look and feel better again. My face is pretty much unrecognisable now and I have gone up from a size 12 to a 16 in 6 months. Its just utterly awful and I feel so embarrassed and fed up. I'm not particularly vain but the physical changes are so dramatic.

I had PMR/GCA and started off on 60mg prednisolone a day. Now down to 2mg a day after 3 years. I had the awful moonface and it didn't disappear until I was down to 5mg. The same with the weight..I put on over 2 stone..I still need to lose a stone now but tbh just grateful I'm not feeling like dying anymore. I didn't overeat at all and ate healthily..none of that sadly made any difference to the weight..it's just a by product of the pred. Lots of people think diet helps keto etc. But personally I don't.

Original poster
SweetSakura · 06/05/2023 00:06

Ahh I am going to really struggle to be patient while I taper down!

I couldnt overeat even if I wanted too, i' m on another immune suppressant (mycophenolate) that makes me feel pretty groggy/full.

You're right, the best thing will be to no longer feel so utterly dreadful, and to be able to do things again.

But right now the outward symptoms are distressing me too, I think it's just the look I see on people's faces when they haven't seen me for a while.

OP posts:
Original poster
SweetSakura · 06/05/2023 00:11

Sorry -one question- Did the moonface.etc start to disappear gradually as you tapered down,.or did it only really even begin to disappear once you were on quite a low dose?

OP posts:
LulooLemon · 06/05/2023 10:02

For me the unwanted facial appearance began to go once I was tapering down from 10g. I thought I looked strange, but many people didn't seem to notice.

From 10g to 0g took nearly a year as I had to keep going back up as symptoms returned. Looking back, I could have probably been fully off them sooner if I hadn't been so hasty in reducing which made symptoms return and forced me to keep returning to higher doses.

The steroids also made me hairy and gave me mood swings. BUT they did their job in making me better for which I am really grateful.

Big hugs for you. You are not alone. 💙

AnnaMagnani · 06/05/2023 10:05

My DM had PMA/GCA and also had to do the high dose steroids. Got every complication of steroids going as well - diabetes, osteoporotic fractures, sepsis, you name it.

She was absolutely determined to get back to normal and put in a massive effort to get the weight off.

Gave up all cakes/sweets/sugar, changed to a low carb, high fibre diet and the weight is all gone and her face is back to normal.

Original poster
SweetSakura · 06/05/2023 10:19

Was that as well as dropping steroids? I can't remember the last time I ate cake/sweets /sugar!

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AnnaMagnani · 06/05/2023 10:21

When she was on the high dose it honestly was a matter of just trying to minimize how bad it was.

The weight, moonface and hump only really went on weaning which she was absolutely determined to do.

Original poster
SweetSakura · 06/05/2023 10:22

@LulooLemon thank you thats helpful to know - it sounds like I need to be patient then

I am on some other immune suppressants (mycophenolate) now to try and treat the underlying condition , so hoping they will start to kick in which will help. But I was so much less ill before I started steroids. I was able to walk the dog a bit and swim a bit whereas now I have to rest after having a shower!

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Original poster
SweetSakura · 06/05/2023 10:24

Thanks @AnnaMagnani yes that's my approach too, I mean I always ate fairly healthily anyway but it has been galling how much my body changed despite being very careful but I guess I won't know how much worse it might have been if I wasn't careful!

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AnnaMagnani · 06/05/2023 10:25

@SweetSakura I think this is how my DM felt, the disease was awful but the cure saved her eyesight but otherwise ruined her life.

Hope mycophenylate gets working soon so you can get off the steroids.

Original poster
SweetSakura · 06/05/2023 10:27

Thanks @AnnaMagnani . I'm glad they at least sorted her eyesight but yes at such an awful cost

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Pringles5 · 04/07/2023 22:39

Hi I have been on a high dose of steroids for a couple years, I have mg too, and just can’t get off it. I’ve started azathioprine hopefully that kicks in soon.
I went from a size 6/8 to a 14 and I know the feeling of embarrassment, I honestly have spent the best part of two years hiding away. Moon face started coming down at 15/20mg but I’m stuck on this dose now.
now you’re tapering down hope you feel better soon

blahblonk · 04/07/2023 22:43

My dad was on high dose steroids for a year or so, put on so much weight with moon face etc. Now off them for a while and the weight’s just dropped off him and still going. It’s fantastic to see him looking like his old self again and has happened surprisingly quickly. So don’t be downhearted

Original poster
SweetSakura · 04/07/2023 23:48

@Pringles5 I have managed to drop down to 12.mg now and can see the moon face starting to go a bit, but my slurred speech is back quite badly now so I feel a bit despondent. Not least because it means I have to be careful how much I exercise again, after starting to enjoy being able to exercise when as I tapered off the steroids!

I started on mycophenolate in January I am hoping it will kick in soon and I can keep tapering, I really want to be off the steroids but equally am finding my slurred speech almost as embarrassing as the moonface now 😬

@blahblonk that's good to hear! I desperately want to get off them properly, I hate not looking like myself

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