PMRGCAuk
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Moon face

Moon face

There has been some discussion recently about moon face, how awful it is or isn't, and whether it goes away. I hated the way steroids made me look at the time, because I hardly recognised myself. But that was as much to do with how I felt about myself on the inside as how I looked on the outside. To illustrate the effect of the filling and smoothing out, and the general 'ohyoudolookwellness', here are some photos of me before steroids, in 2004, during steroids in 2008 (yoyoing between 7 and 10mg) and three months ago. I didn't cut down on carbs, I was pretty well hooked on carbs, but I'm pretty sure that if I had, I could have avoided most of the weight gain and moon face, and more importantly, avoided developing type 2 diabetes later.

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Kate Gilbert thank you so much for showing us these pictures. I think it is very honest and brave to do that. Picture number three is lovely and has given hope to us all I am sure. I took pmrpro 's advice to cut carbs right at the beginning so I have had the benefit of someone else's experience. As a forerunner you probably did not have this help. Everyone on this forum is so generous with advice and help. I for one would be lost without you all. Enjoy your hard won health.

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Hi Kate

I have been on steroids now for over 2 years, starting at 50 mg for GCA and still on 5 mg. I did not develop a moon face and I put it down to going very low carbs, especially no sugar. I also am gluten intolerant so follow a gluten free diet. So far so good!

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How many carbs do you eat per day? I am petite, PMR 6 weeks in and food sensitive. I feel horrible when I eat night shade vegetables, bread, wine. The sugar in yogurt, cottage cheese, etc. drives me to the moon. My doc said there is no scientific evidence linking diet to PMR. She said low carbs, low fat. Others on this site recommend full fat. I started mixing full and low fat. Since all I can control is my diet, I am obsessed. My weight is low but I just went from 20mg to 25 mg Pred. and gained a pound. I probably need more Pred but I have osteoporosis so Dr. wants to keep as low a dose as possible. The shoulder pain is better but always present, especially at night and when I wake up. I split the dose 15 mg at 5:00 am 10 mg at 5:30 pm. I am very hungry and eat 6 times per day.

I would appreciate any tips you can share. Thanks! Tell me about your journey.

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Hi Sandy

I too am petite, 9 stone, 5' 3". I don't measure carbs but this is what I have on a normal day.

I start with my rhubarb compote (stewed rhubarb, plums, apples with Crown Mulling spice - does contain sugar) mixed with full fat plain Greek yoghurt. I graze during the day on raw broccoli and carrots sticks in yoghurt and grated cheese dip. My tea is usually meat/fish and veg, no rice or potatoes. As a substitute for mash I used mashed cerleriac or sweet potato. I don't snack except for a piece of fruit or a piece of cheese but I do have a glass of red wine most nights. I am very lucky that I don't have a sweet tooth and can easily resist cakes and chocolate. All I can say is that it has worked for me over the past 27 months.

Hope this helps.

Cheers

Kathryn

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Yes, it def helps. Thanks so much. Keep up the good work! You inspire me.

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What's in the grated cheese dip? I want some!

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Hi Sandy, I use Greek Yoghurt, grated cheese, chives and then add a bit of pickle (sweet onion relish or branston pickle, basically whatever happens to be in the cupboard). I'm pretty generous with the cheese to make it thick enough for dipping.

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Yum! Thanks

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So excited...making dip for boring chicken. I will put it on chicken and warm it up or use as a dipping sauce.

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Nomnoms 😊

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Hi - what time do you have your last meal of the day? I would find it really hard to get through to the evening on just a few veg sticks and cheese dip. There's still a bit of me that's a carbaholic. Always fighting it.

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Hi Kate

My husband is retired Merchant Navy so we have our tea pretty early, usually by 5:00 p.m. We may be retired but everything has to be on schedule! We stay up until nearly midnight most days and I have a glass of wine at about 10:00 p.m. I don't seem to get hungry in the evening but I suppose it's all just what my body is used to.

Maybe I am confusing things by referring to "Tea". In Scotland, "Tea" is our main meal (supper).

Cheers

Kathryn

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Yes, when I was a child it was always 'tea'. Dinner was in the middle of the day. Now it's lunch in the middle and dinner around 7. (My husband says he's more working class than me but he doesn't know what he's on about).

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Low carb usually means you need a bit of fat, not low fat. "Low fat foods" tend to have carb junk in them to make them taste acceptable (not to me but you know what I mean). If you eat low fat you WILL be hungry - that's why you need fat in food, it satiates.

Whether there is scientific evidence about diet and PMR is immaterial - it is what makes you feel unwell that matters. Nightshades don't have the slightest effect one way or the other for me - but if I eat carbs I gain weight.

However, your weight is so low you don't need to worry about your food. And you certainly shouldn't be obsessing - that is an unhealthy relationship with food that leads long term to problems as I'm sure you know. Perhaps you could do with a session with a dietician and discuss your approach to food.

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Thanks for the good advice. I think once I have made peace with PMR as a life changing event, my relationship with controlling food will improve. Diagnosis was June 19th. I added fat, feel full, and know I'm eating healthy. On vacation in Nantucket. Lying down on my bed. After 2:00 pm I fade.

Any way to bring slightly better than ESR 66 and CRP 99 markers down besides Pred.?

How are you feeling?

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Sorry, not really. You can add things like turmeric and garlic to your diet providing you are not on other medication that they don't mix with. Oily fish is also good as an anti-inflammatory food. They may help - but they won't bring ESR and CRP down on their own. Remember too that other things may be raising them - colds and injury too.

Me? I feel fine :-) But my secret is not to compromise on my pred dose - I take what I need.

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Thanks for good advice. I appreciate all you do for me.

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I have been lucky and have put a small amount of weight on my face but gosh it smooths the wrinkles well! Nothing is all bad

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Suetum, you are so right about the wrinkles. Now that I have lost the full moon and regained my cheekbones, I find I also have acquired some new wrinkles over the last 6 years. My new passport photograph is truly appalling! Can't win them all.

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Hi Kate,

Thank you so much for sharing the images, it does indeed give us hope. I have been 'moon faced' for two years, always having a slim face, now being told constantly I look well when in fact I dont actually look like me at all!

I have put on weight as well but am slowly losing that, being really strict, but no change on face yet though...

You are looking really great now, enjoy!

Best wishes Lesley

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Kate you are beautiful! Your book was like my bible. I was able to dodge moonface and weight gain with a very low carb, no sugar diet. I had no choice as my cholesterol jumped 68pts and sugar almost pre-diabetic. The cholesterol went back to normal but it barely touched my sugar. I did lose weight and everyone kept saying how great I looked. Little did they know how lousy I felt.

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Thank you all. You have just made me cry. In a good way. xxxx

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Thanks for the photos Kate! After a day of feeling bloated and fat and a bit self loathing your photos have grounded me. You look pretty in all of them. Perhaps it's like passport photos, 10 years on you think I wasn't that bad.

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Hi Kate,

You look beautiful! In all three pictures. Thank you for setting up this site and I have read your book already even though I was diagnosed a month ago. I have also reread sections as well. I took advantage of the advice provided and cut carbs and sugars from my diet from day 3. I splurged for a few days. So far no weight gain.

Your post is encouraging, especially for those early in our journey. You are truly a special special person.

Thanks from the bottom of my heart!

TJ

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What a truly inspiring post - as someone who was diagnosed only 10 days ago, it has given me such hope. I've already had such encouragement from this forum and will definitely track down KateGilbert's book. Thank you so much.

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Hi Janann25,

Kate Gilbert's book is excellent. It helped me a lot as does this forum. I got mine from Amazon. I also thought her post was "inspiring".

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How wonderful to see your photo's on this site, you have helped so many people including me with your two very enlightening books on PMR. I read bits from them often and take note of everything you say. Having had PMR for 2.5 years now and now down to 3mg of pred from 15mg I can honestly say the 'moon face' has gone and I am looking somewhat normal now !! You look good with a moon face, just as everyone said I did, however I hated it as it made me feel fat all over, even though I wasn't. I wish you well Kate. Love Maz

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Kate you are a beautiful woman.

Moon face? Well, in that case I've got the full moon body to boot!! I'm 10 months into PMR and preds and so far up 12kgs and hating every single gram of it.....but I'm trying SO hard to have a PMA ( Positive Mental Attitude!!) and have decided to get through this hideous and ridiculously painful illness first then tackle the weight issues! If not, I'll be onto the Space Agencies to let them know there is definitely a new moon in the galaxy!!!

Thank you for sharing your story and pictures xx

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All lovely photos- thank you for sharing them. I'm sure it's a great encouragement to all of us who feel we don't really look like we used to at the moment. X Jackie

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You look brilliant. What an inspiration.

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Dear Kate,

Thank you for posting your beautiful photos, what an inspiration for us all and you have no idea how your post and books have made a difference to not only my struggle with PMR but many many others on this forum.

Bless you, you give us all hope and an insight to the light at the end of our journeys. Sincere best wishes to you and everyone on our wonderful forum. Jane xx

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Yes indeed!

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