Moon Face

[Summerrental]

As you reduce prednisone, does the moon face also start to reduce? Also very tired & feel wobbly if I walk a lot, is it from the PMR or the prednisone?

[PMRpro Ambassador]

It depends - for some people it will fade earlier than for others. In some it persists as long as they are on any pred.

However - I had developed quite a moon face and other Cushings signs when on methyl prednisolone (Medrol) but was switched to prednisone and at the same time cut carbs drastically. The fat around my midriff started to melt away in days and after about 4-6 weeks I discovered my trousers wouldn't stay up! Bit embarrassing as it was my daughter's wedding ... My face also slimmed down. I lost 35+lbs over the following 18 months or so even though for much of the first year I was still above 10mg. I have been back at 15mg since last autumn - my weight hasn't shot up and there is no sign of moonface at all. You CAN reduce pred weight/fat effects if you are disciplined - I don't refuse to eat carbs, but I do keep them to a minimum. All my doctors say they wouldn't know I was on pred - I'm overweight but no Cushingoid at all.

The wobbles? Mostly poor muscle tone from PMR and a bit of pred effect possibly. But a regular rest when walking does help - walk for 20 ins, rest for 5 or 10mins. I used to walk 45 mins to a restaurant near us and be kippered by the time I got there (the last section is horribly uphill!) but after a leisurely lunch I was fine to come home.

[Summerrental in reply to PMRpro]

Thank you for your reply, I will try to cut out carbs & start a walking regimen.

[Hidden in reply to Summerrental]

I cut out bread and potatoes when I was diagnosed with GCA and lost 10 pounds in 2 weeks if I remember correctly. Whatever I am now down by 14pounds and steady at that weight. I needed to lose a bit anyway and am now back to my usual 34 inch waist. Happy

[Suffolklady in reply to PMRpro]

Lol, I haven’t heard the expression ‘kippered’ for donkeys years. Made me chuckle.

[pinks33 in reply to Suffolklady]

It's a useful alternative to the word I usually use ( knack.......d) which I am always being told is rude. Can't understand why.

[PMRpro Ambassador in reply to pinks33]

I was being good too - I use knackered often but am aware some people think it is rude, even though in general use it isn't. This is probably the reason:

phrases.org.uk/bulletin_boa...

[pinks33 in reply to PMRpro]

I've always used it without being aware of any untoward/sexual connotations. I must be an innocent! I'll be more discerning now when I use it. Sometimes it really does describe how you feel when "exhausted" doesn't cut it.

[PMRpro Ambassador in reply to pinks33]

I've always known of the "other" connotation but then, there are a load of words we wouldn't use if you bore those in mind. I can't help other people's minds ...

[lizg0017 in reply to PMRpro]

Wow, good for you! Very inspirational.

[GerriMc]

I’m down to 5 mgs now and my face and buffalo hump have gone down a lot. Yep, I had the wobbles and tiredness too. If I was to give advice, it would be to keep as active as you can. I had significant pain in my groin area which was due to atrophy. Lots of physio and stretching, then bit by bit building the strength back up in my legs by walking. I did my first Parkrun (walked most of it in fairness 😁) in over a year this morning. I’m so grateful to be able to walk up a hill again.

Take rest when you need to but keep walking when you can! X

[Summerrental in reply to GerriMc]

Thank you for your advice, I will try to build up my strength.

[Marilyn1959 in reply to GerriMc]

Congrats on the park walk GerriMc. A real achievement.

[GerriMc in reply to Marilyn1959]

Thanks Marilyn, a bit sore today but not too bad! 👍🏼

[Mary63]

I have no moon face. Maybe I have been lucky. But I been very low carb since first on prednisolone. Try building up the strength in your legs gradually. Take rests on the way. Good luck!

[Fifelassieo in reply to Mary63]

When you say low carb, how many carbs are you eating a day.

[Mary63 in reply to Mary63]

Between 15 and 30 g carb daily. More often between 15 and 20g. That is low, but I rarely feel hungry on two meals a day at midday ish and 6pm Lots of veg, mainly overground grown, though I do sometimes have carrots, not much fruit (and even then mostly berries), absolutely NO fruit juice, palm sized portions of meat or fish, eggs. And FAT...the fat on meat, avocados, olive oil, butter. That seems to stop hunger.

I had a six month phase where I allowed myself carbs in moderation.....potatoes twice a week, bread twice a week, and I gained 14lbs. Took weight off over another 6 months, by cutting carbs and increasing fat.

Look at dietdoctor.com or go onto Health Unlocked LCHFforum. It’s very helpful.

[PMRpro Ambassador in reply to Mary63]

I'm the same - if I want to lose weight I have to be down to that sort of level. I can maintain my weight on considerably more. And I eat much the same way.

[pinks33 in reply to Mary63]

Pre pred I wasn't a breakfast person, and I often skipped it. I now take my pred with breakfast, which is usually yoghurt on its own or sometimes with eggs. But I am still not really into breakfasts TBH. As you only have two meals at midday and evening, when do you take your pred?

[PMRpro Ambassador in reply to pinks33]

Butting in - a yog or a glass of milk are felt to be enough for most people. I don't do breakfast either (except when already paid for at a hotel...) but I take a form of pred that is taken at night.

[Summerrental]

You have been lucky since you did not get moon face, my neck has gotten puffy also & my stomach. I am going to go low carb. Thanks for the reply.

[Yellowbluebell]

I was naughty with my diet at the beginning and put on over a stone very quickly and my face got very moon like. Not a good.time just before youngest daughters wedding but behaving now and hopefully will lose some weight and the moon face, just need to find the scales after out house move. You will lose it but I definitely reccomend people start on a low carb diet.asap.

[Summerrental]

Thanks for the reply, I will definitely try to watch the carbs & will start to exercise when not fatigued.

[PMRpro Ambassador in reply to Summerrental]

We aren't talking work-out exercise. It is suprising how much better and less fatigued you can feel after a gentle walk in the fresh air, for 10 mins to start with.

[Summerrental]

Thanks, I will try that. I do love to sit in the great outdoors & soak up the sunshine, I will start doing the walk.

[PMRpro Ambassador in reply to Summerrental]

Remember to use lots of sunscreeen now you are on pred!

[Summerrental in reply to PMRpro]

Thanks, I will use sunscreen

[Hidden in reply to Summerrental]

Go in the direction of a seat or wall you can sit on along the way. Fresh air lovely.

[Summerrental in reply to Hidden]

Good idea, when I get tired I can sit a spell. Thanks

[GlynisE]

I swim every week and have cut down on bread. A little moon face but it has ironed out the wrinkles. And my tummy has slimmed a bit.

[pinks33]

I used to love a brisk walk, then when I started on pred I was so weak from muscle loss that my hips would give way, and I could only meander along very slowly. I built up my leg muscles with a daily short and slow walk, gradually going further and faster, and now I am back to my usual brisk pace. You will get there eventually. And as your fitness improves you may find it easier to control the carbs.

[PMRpro Ambassador in reply to pinks33]

That is exatly how I did it 6 years ago - even starting with crutches as I had an achilles problem at first. Anything is better than nothing - and even adding just a few minutes (as in 2-3 mins) at a time soon builds up.

[FRnina]

another small thing concerning weight gain: hospital dietician advised me to weigh myself 1 X per week, same day same time and keep a record. It helped as a reminder when to control the carbs. All part of taking the reins and being in charge of one's own health. I walk 3 x per day minimum with the dog- the best exercise and also very de-stressing.

At 6mg pred I have a semi-moonface but no one seems to notice or care! I guess it will go down in time as I continue to taper. The deadly fatigue definitely got better with tapering.

[pinks33]

I have a sort of one-sided moon face. The side that gave me the worst GCA pain and where I had the biopsy is slightly swollen and red, while the other side is normal. Even my GP commented on it, so it's not my imagination. It's been like this since starting on pred. It doesn't bother me too much aesthetically, but I do wonder if there is something lurking under the surface that the pred is masking.

[Hidden in reply to pinks33]

I "only" have PMR but the first 2 years my right side was more moony or swollen. I think a couple of others mentioned it too. I suspect mine was from 2 things. 1- a tooth that finally developed a visible abcess but had been bubbling away for a couple of years while dentist decided what to do with it. After the massive abcess it worked it's a way out. The relief!!!That was the upper cheek bit. 2- the lower cheek and jaw was I believe from me watching TV and reading with my face cupped in my hand. Once I got out and about more it went.

[pinks33 in reply to Hidden]

I had to laugh at that, thanks Poopadoop. Mine is upper cheek, so perhaps an abcess. I hope not - I have a bridge there. But what will be, will be, and it's not on my list of things to fret about. I wonder what the others who mentioned it put it down to?

[Hidden in reply to pinks33]

I can't remember but it was a couple of years ago. Could still be searched for.

The tooth was what remains of a broken bridge. I had snapped one tooth so the abcessed one was being cantilevered against by the bridge. I couldn't have it repaired. The root from the broken tooth is in place in case I want to pay for or get referred for an implant (I had bridges as I had no adult teeth at 3rd tooth in on right and left). The tooth was wobbly from the pressure but it looked like it could be saved. When it came out i realised that it had been causing face pain for 5 to 7 years. I am getting it all made nice but my grinding issue a nightmare against porcelain bridges.

[hannmorr in reply to Hidden]

I had tooth grinding issues for years then I finally weakened and accepted dentist's advice to have mouthguard made. Changed my life. Takes a bit of getting used to but no broken crowns or teeth since.

[Hidden in reply to hannmorr]

Yes it's great isn't it. I have been using bought ones waiting for dental hospital gto get a move on. I got one made and it so good. Apart from the lisp, it's hard to see. But on a morning my jaw is much softer and less painful. It was stuck in this morning until I broke the vacuum.

[PMRpro Ambassador in reply to pinks33]

Everyone is lopsided - but for most of us it isn't obvious unless you put a mirror down the line of your nose on a photo and create a face of one side plus its mirror image. So if one side has more fat depositis it will puff more with pred probably. And if there is/was an abscess it may have healed but changed the jaw shape slightly.

[pinks33 in reply to PMRpro]

Thanks for that reassurance. I too have been telling myself that it's down to my asymmetrical face - my left side has always been my best! My GP also said that one-sided swelling on pred was not uncommon. I still don't know why I am redder on the swollen side, perhaps the redness comes with the swelling, but I live in hope that it will subside as I reduce the pred.

[PMRpro Ambassador in reply to pinks33]

It is amusing to do the mirror test on family photos!

[Marilyn1959]

I was too miserable and felt too sorry for myself to be bothered about 'dieting' as well as coming to terms with life with PMR. Naturally I 'ballooned' complete with chipmunk face and buffalo hump. However buffalo hump went at 10mgs and chipmunk face reducing at 7mgs. Now concerned I will age as I reduce further since I had lines that resembled map of England on face pre pred and am worried that post pred the face will resemble the map of the world!!!! Pred has been my free botox!

[PMRpro Ambassador in reply to Marilyn1959]

I do understand that side - but trying to take some control back via diet may well mean you feel better too as well as not turning into a blimp. I've heard loads of people say it who started like that and later were faced with diabetes so had to change something.

[Bamber99]

My moon face disappeared at around 5mg. It went quite quickly once at that level. I started at 40mg in August and didn’t put weight on until I’d reduced to about 20mg in October. Since then put on 20 lbs🤬 Everyone is different!

[pinks33 in reply to Bamber99]

Much the same with me as regards weight gain. I started on 60mg pred, and lost 10 lbs over the next 5 months until I got down to 15mg pred. I had already lost 9 lbs before diagnosis. I didn't have a big appetite during those 5 months, had no interest in snacking and certainly wasn't consciously dieting. Since then, over a period of 4 months as I have reduced pred to 10mg, I have regained the 10 lbs, and find it very easy to gain weight and difficult to lose it. Food is a constant temptation. As you say, pred affects us all differently.

[Christophene]

Me too; just a couple of blocks down the main Street of my small town, I am worse than wobbly.