Moonface

[Lopera]

I have begun tapering from 15g and am wondering about moonface.

Does this go only when you are completely off prednisolone or does it reduce as you taper?

Thank you for any insight into this.

[SnazzyD]

Mine reduced with dose but my face still kept changing subtly for months after Pred stopped. I noticed changes in steps after thinking nothing was changing. Are you cutting carbs and salt? That helps too.

[Lopera in reply to SnazzyD]

Hi SnazzyD

Yes I am looking at my diet and have reviewed the weight loss FAQs and will try to follow a low carb diet. I've never really thought about salt but I probably have too much. I wasn't particularly overweight but in recent months have lost 5 inches in height due to osteoporosis and spinal fractures so what was ok for 5ft 4in is not ok for 4ft 11in. I have a protruding abdomen now which is very uncomfortable.

[SnazzyD in reply to Lopera]

I didn’t gain weight due to low carb diet and sadly, muscle loss. However, what fat one does have sits around the face, neck and abdomen. You have to be careful of thinking you’re fat when actually you’re not, if you go only go by the appearance of these parts. Salt + Pred = fluid retention. So you can influence the moon face but not get rid if you have it, for now. You are very early days so the days of improved looks seems a long way off but you will get there.

[Lopera in reply to SnazzyD]

Yes, the moonface isnot the main focus. I really need to reduce in the abdominal area just to make life more comfortable.

[PMRpro Ambassador in reply to Lopera]

When I first went low carb, that was where my fat went first - within 2 months the trousers I'd intended as spare for a wedding outfit were falling down because my waist was returning.

[Lopera in reply to PMRpro]

I really hope that happens for me. I need to be comfortable.

[krillemy in reply to PMRpro]

How low is low carp in your case? Like keto low or did you have some carbs?

[PMRpro Ambassador in reply to krillemy]

When I was losing weight on pred it had to be very low - like 20g carbs or so, SnazzyD was the same. So yes, keto low - keto low isn't zero. I can maintain weight at a higher level but last summer I went above that while staying with my daughter (vegan, carbs with a side of carbs!) and regained some of the weight I had lost since getting to 7mg pred, not a lot but seem to have settled at my longer term default weight. I eat lots of salad and veggies normally, Rarely bread or pasta/rice. But once every 2 weeks I eat a decent piece of cake at the Seniors Club meeting, because that is what they do! That day I don't eat any more! Now I also only eat between late lunchtime and dinner - effectively time restricted eating. I've been aware of comfort eating for the last few months since I got back from the UK - but that is something else and a habit I must sort out now Christmas is over. Why is all Christmas food in Europe so carby and so yummy????

[lizg0017 in reply to PMRpro]

Thanks for the info. Sadly, the Christmas food in the United States is also very carby and so very yummy. lol. Happy New Year!!

[PMRpro Ambassador]

Depends - mine never got to be a really obvious moonface, just chubby, but it reduced after I lost 35lbs of PMR and steroid related weight by cutting carbs but atill on 10-15mg pred. I'm still on 7mg pred - and even my doctors say no-one would know I've been on pred for 16 years. I'm cuddly but have fought the weight fight all my life!

It may go quicker if you give it a helping hand by cutting carbs drastically - removing processed foods, especially UPFs, from your diet not only cuts the carbs but also cuts salt a lot as well. And is far healthier for other reasons.

[Lopera]

Thank you for your experience. I must say I've never been naturally slim and have always had to watch my weight. I plan to cut out bread and pasta, reduce rice and potatoes and load up on veggies and protein. Apart from the odd digestive biscuit I don't really have any UPFs. My salt problem is more me and the salt pot which I will need to tackle.

[PMRpro Ambassador in reply to Lopera]

Can't remember when I last filled a salt pot!! The mixed herbs I use for everything contain salt, more than I would like, so never buy salt.

[AlamedaCounty in reply to Lopera]

Try "LoSalt". This has 66% less sodium and more potassium - very good for you. Should be available in supermarkets; certainly is in Waitrose.

[Lopera in reply to AlamedaCounty]

Thank you, that's a great suggestion and might be a good halfway house on the journey.

[PMRpro Ambassador in reply to Lopera]

I tried it once - didn't like the taste so it would have made good aversion therapy!!

[Lookingforideas in reply to Lopera]

When cutting carbs a lot, i found it helps in several ways to change to wholemeal/wholegrain versions for the few that you do have. They’re a lot more nutritious than the refined white versions ie breads, pastas, cereals, rices etc and come in a huge variety of different tastes and textures - especially rices - so because they are more ‘interesting’ it’s easier to eat them a bit slower and enjoy the textures/flavours more, so that also helps you to feel fuller quicker and to not get hungry again as soon as after eating the more refined ‘white’ carbs. A carb is still a carb, but I found those tips immensely valuable both for taste & satiety and now I definitely wouldn’t eat ‘white’ carbs at all unless absolutely starving with no other option 😊

[PMRpro Ambassador in reply to Lookingforideas]

There is still a place for supermarket white sliced for a tomato sandwich. Even spread with marg ... Lots of pepper essential. Even better made the night before for lunch on a day trip 😂

Oh, the things of childhood - I even craved them when pregnant , it was diagnostic!!!!!

[Lookingforideas in reply to PMRpro]

😂😂😂 I do get that, and I did used to love them too way back when, but now I can’t even imagine eating that bread - although a thick slice of lightly toasted artisan sourdough rubbed with garlic, topped with sliced/diced tomatoes & drizzled with EV olive oil would definitely be wolfed down as a rare ‘treat’ 😊 my mouth is watering now🤦‍♀️. Each to our own I guess, and that old adage / a little of what you fancy does you good is absolutely right isn't it !?! 😉

[PMRpro Ambassador in reply to Lookingforideas]

Yes - when the daughter and partner only had the rubbish resisting it was very easy. Now they are pickier about their bread and it is slightly more difficult. But nowhere in the UK can match German bread and the best German bread hasn't reached here either. I used to pick up an organic pure rye in Garmisch on the way through, slice it and freeze it, half a slice at a time, lasted months!! Tuscan or Puglian white is quite nice too ...

[QiRelief505 in reply to Lopera]

This suggestion will depend on your tastes, but I have found a splash of red wine vinegar adds a briny flavor to savory dishes such as soups and stews. I consumed a lot of salt but have cut back in cooking with it over the years due to my husband’s hypertension. I’m working hard to cut carbs and above all sugar to reduce inflammation. Cheers to our will power in the New Year!

[Lopera]

It goes right back to my childhood and living in Malaya and Aden. We always had salt in the diet, I think for hydration, not exactly sure but I know I need to retrain my palate.

[PMRpro Ambassador in reply to Lopera]

Yes, lots of sweating, lots of electrolytes in the sweat and they need to be topped up. ANd taking salt out takes time and discipline. I stopped using it more by accident than design: I got my first microwave back in the 1980s and used it a lot for cooking veg. The instructions said to add salt AFTER cooking to avoid dehydrating patches of the veg - and I always forgot!! The result was that eating out became a trial - far too much salt used in hospitality kitchens for me!! One day a week was fine - but holidays were difficult when we wanted to eat out most days. After 3 days my feet were like footballs!!

I use a lot of herbs and pepper rather than salt. Lemon is also good.

[krillemy in reply to PMRpro]

Thanks, I eat too much salt or soy, I think, and lots of spices as well. Also after a nasty 2 week covid despite jab im October, my taste is only just recovering Well, I’ll have to do something while on 11.25 mg. I gained moonface and 4 kg this summer while on higher doses, and it does not come off by itself this time. I don’t smoke anymore or drink, so it’s really difficult, even though we don’t eat a lot of pasta or white bread. Especially the snack situation is sad! Anyway, Christmas is over… no excuses.

[PMRpro Ambassador in reply to krillemy]

I know the feeling - though Christmas may be over, the Plaetzchen aren't!!! I was given a tin-full last week ...

Spices shouldn't be a problem but salt and soy can,

[krillemy]

My moonface follows the dose op and down

[Lopera in reply to krillemy]

Interesting.

[Daffodilia]

My moon face came suddenly at 7 mg but disappeared after a few days

[Lopera in reply to Daffodilia]

Seems like there are no rules!

[calibriel]

I haven’t managed to come off pred completely: I was diagnosed in 2020, and I’ve been at around 3mg for about 3 years now. I haven’t had moonface for a while, but I don’t know when it went. I just looked in the mirror one day, and it was gone 🤞 I’m sure that if I increased significantly for any length of time it would come back. It’s a small price to pay for the relief from symptoms, but I sometimes wonder if the rest of the world, practitioners etc., appreciate what a depressing effect it has to have your own face become unrecognisable. I was recently offered an alternative BP med that “sometimes has swollen legs as a side effect, but nothing serious”: i.e., as if that was something tolerable. Er, no

[Lopera]

It will be interesting to see what happens as I reduce. Fingers crossed the tapering goes well!

[Dinahmite]

Oh the lovely moon face! It will be exciting to recognise myself again! One of these days.

[Katietee]

My moonface (and gorilla hump) appeared while taking the higher steroid dose but started to disappear when down to around 10mg/d. I personally think it was steroid induced and not weight related because I am heavier now than I was then (about 8 years ago) and I do not have a moonface now. I am presently down to 2.5mg/d prednisolone. Hope this helps!

[PMRpro Ambassador in reply to Katietee]

It's a bit of both - but the pred directs your body fat to go to specific places, back of the neck, around the midriff and around your face. I had gained weight with lack of exercise due to PMR but was sort of general. After going on pred, I didn't gain any more weight but it moved to the usual positions.

[Lopera]

yes I agree, I think it is steroid rather than weight related. I need to lose weight not because of the moon face which is the least of my worries but because I now have a protruding abdomen following several spinal compression fractures. I think if I can lose some weight, I will be more comfortable around my middle. My moon face query was just curiosity.

[hill-walker]

Greetings Lopera. I was on very high pred. 80 mg for refractory jaw issue with gca then slowly tapered. Major moonface! It slowly diminished as my dose was lowered. Now on 5mg. and it's blessedly gone! I did follow low carb low salt diet, but that didn't save me when the dose was high. With time, your lovely face will emerge.

[Lopera]

What a lovely message! Thank you.