Losing the moon shape face, swollen neck and shou... - PMRGCAuk

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Losing the moon shape face, swollen neck and shoulders

Wraysbury
Wraysbury

Hi. At what dose did any of you notice a reduction in these side effects of Prednisone pls? I know we r all different, but I’d like to think I’m not to far of. I’m tapering atm from 8mgs to 7.5. Thanks

88 Replies
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PMRpro
PMRproAmbassador

Mine faded away when I took myself in hand and cut carbs drastically - I lost 35lbs while still at over 10mg. Part was probably changing the type of corticosteroid I was on but most of it was the diet. I still need to lose more weight - but I'm overweight, not Cushingoid.

Wraysbury
Wraysbury in reply to PMRpro

I cut out carbs as soon as I was diagnosed and have continued for the next 2 yrs +, but unfortunately it didn’t keep these side affects away for me 😔

PMRpro
PMRproAmbassador in reply to Wraysbury

Hard luck. Though are you sure it is low enough carb? Some of us need to be very low to lose weight. And lots of people don;t realise how much carbs they are eating - many discover they are eating too much fruit.

Wraysbury
Wraysbury in reply to PMRpro

Yes. I was very low carb, gluten and dairy free before PMR started

I may have been lucky but I did low carb from the beginning and have had little weight gain and no moon face at all.

diana1998
diana1998 in reply to Mary63

I cut down carbs and sugar and lost weight and no moon face. But I was really strict.

I too did low carb diet and walk over 10,000 steps so no weight gain or moon face

Well you are all very very lucky. Am I the only one who has this problem?

Viv54
Viv54 in reply to Wraysbury

No your not alone, in answer to your question,im on 8mgs of pred , ate like a horse for the first month , i started at 40 !! I have the lot ! I put on a stone in weight ! My moonface came really quickly , but its going down slowly , itsa horrible side affect , hope yours goes down soon. I have stated a new Diet today, not drastic , but to help me along the way. Good luck you will get there !

Wraysbury
Wraysbury in reply to Viv54

Thanks 😊 I’ve put on a stone too. 😔good luck with your diet xx

Viv54
Viv54 in reply to Wraysbury

It's not easy , but we have to try 🙄😊

You are not alone Wraysbury,! I have never had a weight problem - lucky me. A good diet all my life and no real cravings for carbs or chocolate. My moon face etc ( none of which was marked) very quickly disappeared about the 14mg dosage. I am now at 8mg and no chipmunk signs at all. Hang on in there - it will disappear. Don’t do anything foolish like cutting your pred dose too abruptly.

Wraysbury
Wraysbury in reply to Ranchero

Thanks. All the comments so far made me feel like it’s all my fault, but as I said I am very strict with my diet. The only thing is that pre PMR I was jogging 3 times per week and cycling and walking my dogs. And then I stopped totally cos of the pain. Then once that was under control I was hit by the extreme fatigue. So I know that I don’t exercise as I used to. But I still walk everyday.

Thelmarina
Thelmarina in reply to Wraysbury

We are all complex and different. This is not your fault so don’t think it! I suppose moonface is actually the least of the side effects although it makes us feel so low at times - like we’ve lost who we are. Never fear, your inner beauty will re-emerge in its own time 👍❤️. Ps my adorable children have told me thatI’ve always looked like this 😱😂😂😂. Roll on Christmas when I shall look the part...

Wraysbury
Wraysbury in reply to Thelmarina

🤣 yes my daughter told me I’ve always had a round face. But I could never do the glasses trick when I smile pre pred!!!

Dydee
Dydee in reply to Wraysbury

While I know Pred. causes weight gain if you don't drastically restrict you carbs I believe the inactivity from the pain of PMR is the culprit that starts the weight gain. Especially if it took a prolonged period of time before diagnosis. I barely moved, could not get out of bed, could barely brush my teeth or shower, grocery shop, etc. for the 10 months I waited for diagnosis. Pred. just puts the "frosting" on the cake. LOL

PMRpro
PMRproAmbassador in reply to Dydee

Yes, I gained a lot of weight in the 5 years I had PMR without pred - then the pred made it redistribute itself to the usual places but I didn't gain much more until I was switched to methyl prednisolone which was horrible. Then I took myself in hand and lost 35lbs ...

Dydee
Dydee in reply to PMRpro

You go girl!! That was not easy I'm sure. Well, I've gained 14 lbs since PMR started and no diagnosis for so long. Terrible because I had gotten down to normal weight and bought a few smaller sizes just before symptoms started. I seem to have stopped gaining and am trying to build up to more activity as the weather cools and I need to get out in the garden. I have 50 strawberry plants coming and 5 raspberry plants to replace the ones my husband couldn't keep alive while I had Covid. One gardener in the house is NOT enough. :)

PMRpro
PMRproAmbassador in reply to Dydee

Yes - I wouldn't describe myself as a gardener really but what I did do had to be abandoned when I got PMR. Himself can't tell a weed from a rosebush!!!

Constance13
Constance13 in reply to PMRpro

Neither can mine.

PMRpro
PMRproAmbassador in reply to Constance13

Is he also paranoid about flying creatures? He is so obviously a townie - strange becasuse his brother was OK in the garden and recognised living things of all sorts!

Constance13
Constance13 in reply to PMRpro

No paranoia with D. More likely to be me than him. No! I can't really think of anything which might be classed as paranoid in me.

Gaycreasey
Gaycreasey in reply to Wraysbury

Don’t beat yourself up! You are suffering enough from a disgustingly demoralising illness. Isn’t that enough? I also put on weight, had a moon jowly face and the hump ( in more ways than one!) I am dairy intolerant and have recently become sensitive to gluten. This illness just piles on more and more miserable problems. I also enjoy my food but I am careful about having too many carbs. I don’t deprive myself particularly as I have just found some wonderful, tasty gluten free bread. I say find the enjoyment where you can and don’t fret too much about the weight gain. It will go eventually.

PMRpro
PMRproAmbassador in reply to Gaycreasey

Is it gluten that is the problem? PMR made me develop a rash with wheat starch - I reacted to Juvela flour products which are (were?) made with wheat starch processed to remove the gluten. "wonderful, tasty gluten free bread" - does such a thing exist? Though in those days the Juvela stuff was pretty convincing ...

PS - I see it is still marketed in the UK - not allowed here, must be naturally gluten-free to be approved.

Gaycreasey
Gaycreasey in reply to PMRpro

Yes, the problem was bloating and heartburn. I now have some tablets from the GP which seem to be working. The bread is called ‘Genius’ and it’s VERY seedy.

Carriemetz
Carriemetz in reply to Wraysbury

I had most of the side effects inc weight gain and moon face - together with some painful ones as well that meant I cd hardly walk at all! However, I felt so dreadful, I never managed any kind of low carb diet. I need a bit of toast and marmalade and a glass of wine with supper to make things bearable! However, once I got below 8 on the slow taper, and cd walk a bit again, the weight began to disappear and the moon face and buffalo hump had gone by the time I got down to 6. Am now on 5 for 4 days and 4 for 3 and can get my old jeans on at last. So I don't think u shd blame yrself at all - I didn't do anything, except slowly decrease pred. Hope u find the same thing. 😉best wishes, Carrie

Wraysbury
Wraysbury in reply to Carriemetz

Thanks so much and gd luck with your recovery x

Wraysbury
Wraysbury in reply to Ranchero

Thanks. Xx

I have to be content with just walking too. Pre-pmr 2 years ago I played golf 2x per week and looked after my rather large garden - lots of grass cutting (and I was very particular about that!). By the way I am now 83 and can’t wait until this nuisance goes away and I can get on with things as before! The chap I have cutting the grass is (as we say in Scotland) “awfi” nice but not up to my standard!!

Wraysbury
Wraysbury in reply to Ranchero

We’ve had it the same length of time. I’m 63 x

Ranchero
Ranchero in reply to Wraysbury

Oh to be 63 again! 😀🥴🏌️‍♀️

Around 15mg my moon face began to shrink - I have had to raise my dose several times again over nearly a 4 year period for PMR/GCA and at 17mg have the round face back - after all this inflation and deflation I think I may look like an 'old' wrinkly balloon one day (LOL) but almost getting used to it !!

I was on a low carb vegetarian diet prior to PMR, haven’t gained weight but had the moon face and padded fat area on both tops of shoulders near my neck. I started on 15mgs and the symptoms above went at around 5mgs thankfully 😅

Wraysbury
Wraysbury in reply to Bern435413

Brilliant thanks! X

Always strict with my diet, never getting above 9st. Now on 5.5 moon face disappeared when I gave up alcohol. What a miserable life!

I am on 5.5 mg of pred and moon face and neck are much better

Wraysbury
Wraysbury in reply to Daffodilia

Oh great. Thanks 😊

I have always eaten a low carb diet. I had no moon face for first year on pred - starting dose 15mg - then after tapering too fast and a dreadful flair at 3mg I was put up to 30mg. My moon pig face appeared very quickly along with shakes and puffy weepy eyes!! Dreadful! Now down to 16mg and no improvement. I pray it goes soon! I hope yours does too. 🙏🙏PS - worrying on the alcohol - I need my wee glass of wine of a night! Never considered that could cause it.

Wraysbury
Wraysbury in reply to Loyd

Oh poor you 😔 I hope it starts reducing soon for both of us x

Thelmarina
Thelmarina in reply to Loyd

Weigh up your needs! A glass of wine is essential for me to get through this 🍷🥂🍾(not a bottle though ..yet..😅) x

Loyd
Loyd in reply to Thelmarina

😁😁😁oh indeed!

Hello. I had a face like a polished red apple even though I was very low carb and didn’t gain any weight from the start and I began on 8.5st. On high GCAdoses, it kicked in all of a sudden a few weeks in. It did reduce I'm sure with dose but since the shape stayed, I didn’t notice it as much as those who hadn’t seen me for a while. Below 10mg it started to go to nearer normal, however, it wasn’t until I was below 5mg I started to see the last of it go. It was always a case of looking in the mirror one day and being taken by surprise. My body still held on to the classic steroid shape even though I was slim, until months under 1mg. Surprisingly, it wasn’t until I had zero steroid that my body got rid of that last middle and top of legs extra.

I just think I am very sensitive to it. Sadly, I do think may face has aged disproportionately fast too. Oh yes, salt made a huge difference.

Wraysbury
Wraysbury in reply to SnazzyD

Thanks. That’s helpful. X

Thelmarina
Thelmarina in reply to SnazzyD

Pink lady I presume?

SnazzyD
SnazzyD in reply to Thelmarina

Nothing so subtle. More like Snow White’s one.

PMRpro
PMRproAmbassador in reply to SnazzyD

At least it wasn't a Gala ...

SnazzyD
SnazzyD in reply to PMRpro

Actually with all the broken veins it was close

PMRpro
PMRproAmbassador in reply to SnazzyD

What - forehead too?

Dydee
Dydee in reply to SnazzyD

Oh my, my middle is certainly my issue. Started on 10mg, not enough so went to 15. Finally have tapered 2 weeks to 14 now tapering 2 weeks on 13. Taking it REALLY slow. Sure don't want to have to go back up and start over. I really want my clothes to fit again.

SnazzyD
SnazzyD in reply to Dydee

Have you tried 0.5mg drops and a super low carb diet?

Dydee
Dydee in reply to SnazzyD

I typically eat low carb as a healthy habit. Very little sugar, maybe a sandwich 1x every couple weeks and occasionally English muffin with eggs for breakfast. I think my inactivity is the worst part. Not only because of PMR but we had a record hot Summer so mostly sat and diddled away time on the computer. I haven't really noticed swelling in my face but it could have happened so gradually I didn't see it. But now I have to figure on gaining some wrinkles as I back off Pred. and my face loses puffiness? LOL

So far 1mg drops have been OK and will level off if I run into trouble, and plan on staying at 10mg for awhile once I get there before starting to taper again. From 10 down I will do it .5mg at a time to play it safe. I'm in no hurry. At 78 and with Covid on the rise again I don't need to get dressed up to go anywhere. LOL

Hi Wraysbury

You should start to see a gradual improvement, almost not enough to notice then suddenly.....

I noticed it around 10mg & could feel my jaw line again & l stopped seeing my cheeks when l smiled.

You’ll get there 🌸

Wraysbury
Wraysbury in reply to MrsNails

Thanks. The first thing I’ll notice is if my glasses aren’t pushed up by my cheeks when I smile!!!

MrsNails
MrsNails in reply to Wraysbury

Yes that’s classic, l was always having to wash mine as l kept getting a ridge of make up around the bottom of the lenses! 👓

I’m a bit late in replying, however I certainly had the moon face starting on prednisolone even though I lost well over a stone in the weeks just before diagnosis and in the month after, wasn’t massive to begin with. Sadly the weight has gone back on but the moon face has disappeared- probably around the 6/5mg daily mark. My face has always been fairly round mind you. I’ve been in club zero a few times in the last few years when it’s been easy to loose about half a stone without much effort. Luckily 1mg Pred daily seems to keep the PMR in check but it’s a real effort to loose 1-2 pounds a month when on any prednisolone and if I have a weekend of eating “normally” the few pounds I’ve lost go back on rapidly. My face seems to stay the same.

I certainly have sympathy- I’ve lost count of how many times I’ve been told how well I look.

All good wishes

Wraysbury
Wraysbury in reply to Maisie1958

Thanks. I lost 1.5 stone just before diagnosis. It fell off me in 3 wks! And like you I wasn’t overweight to start with. Once I’d been on pred for about 4 months 1 stone of that went back and then I gradually put on another stone! X

I find certain acquaintances look me up and down appraisingly before telling me I look good and I realise they mean thinner!! Bah humbug! 😅

Wraysbury
Wraysbury in reply to Thelmarina

Yes I get looked up and down and there’s no comment and I say it’s the steroids before they can say anything!!! When I initially lost the weight I was told how well I looked😔

PMRpro
PMRproAmbassador

Forgot to mention - jinasc gained a massive amount of weight due to high dose steroids for GCA, even ending up in a wheelchair. She didn't change anything about how she ate, the weight just went on. It also didn't go away the entire time she was on pred (sorry). She didn't change anything about diet when she stopped pred but the weight quietly melted away - as she realised one day in a shop when her skirt fell down!!

It will go - but everyone is different and while some can lose weight at medium or low doses. others don't.

Wraysbury
Wraysbury in reply to PMRpro

Thanks. How embarrassing would that be!! Mind u it could also be a giggle !! I have noticed my leggings (permanent wear atm) are getting a bit looser so perhaps I’ll brave the scales again one day soon!

PMRpro
PMRproAmbassador in reply to Wraysbury

jinasc being jinasc, she laughed! When I did lose weight it was around my middle it went first - in under a month I went from my best black trousers fitting to them almost falling down. But at least I realised!

Wraysbury
Wraysbury in reply to PMRpro

😊x

Thelmarina
Thelmarina in reply to PMRpro

Love her skirt falling down before she noticed! I’m now looking at my trousers in an enquiring way..😂

Wraysbury
Wraysbury in reply to Thelmarina

Atm the only reason my clothes might fall down would be because the elastic has given up due to overstretch!!! You have to laugh 😂 sometimes don’t you, it’s the only thing that keeps me going !! X

Even in Australia. I have the moon face and I Look as though I am 10 months pregnant At 73 I don't think so I don't even recognise myself when I look in the mirror 10 Kg It is so hard to believe That after all these years of keeping my weight down It has gone wizz on these terrible tablets and GCA. I make sure I do 10,000 steps a day and eat Keto but still the weight went on and Has anyone any suggestion I am trying to taper the tablets .down to 17.5 So Wraysbury if you find out how please let me know It helps when you read your story and I find I am not alone Keep Trying

Thanks. Yes I try not to look in mirrors, it’s still a shock!!! Good luck 😉 x

Thelmarina
Thelmarina in reply to Wraysbury

Avoid shop windows and keep reminding yourself that people are far more concerned with how they look 👍😅❤️

Wraysbury
Wraysbury in reply to Thelmarina

True!!!

You’re definitely not alone. I had the moon face and humpy shoulders. I also put on a lot of weight at the beginning. With my appetite increased by the steroids I ate everything that moved 🤣. However I took myself in hand and lost 45lbs on Weight Watchers. I feel I need to lower my carbs to lose more as some crept back on when I had an additional foot injury and couldn’t exercise apart from Aqua. My moon face and humpy back has definitely reduced and now I’m on 3.5 - 4 mg of pred. We’re all different most of us lose the moon face as we reduce the Pred. Good luck with your PMR journey.

Wraysbury
Wraysbury in reply to Janet57

Thanks 😊 and good luck to you too xx

Just wanted to add that you’re definitely not alone. It’s not easy and don’t be too hard on yourself. Since starting on 15mg, I have gained exactly a stone and seem to be stuck there. Have all the ‘trimmimgs’ ie. hamster cheeks, fat neck, pregnant tummy. Am presently on 7.5mg and looking for signs of deflating! Try to eat low carb but I think I’m too sad to adhere as stringently as some, what with our health problems and the uncertainty of COVID. Take a regular walk but not able to do anything more strenuous.

Low carb does seem to be the way to lose weight on pred though and I will keep trying. Although my cholesterol level has increased a lot since starting pred and the high fat part of low carb is a bit concerning.

Wraysbury
Wraysbury in reply to Rache

Thanks 😊 good luck, I guess we will all get there eventually! X

PMRpro
PMRproAmbassador in reply to Rache

Low carb doesn't have to be HIGH fat - that is what you need if you do keto and that isn't always necessary. Normal fat is fine too.

A lot of feeling full is to do with the volume you eat and drink. Often feeling hungry is really being thirsty so the first place to start is zero calorie drinks like water and fruit/herbal teas - preferably not artificially sweetened drinks. The next step is to eat lots of veggies that are low carb but with bulk - a big dish of salad leaves, cucumber and celery is a good basis but spinach, mushrooms, broccoli, bell peppers ring the changes too and add crunch. Lots more to choose from:

healthline.com/health/food-...

Arugula is rocket by the way - and makes a lovely side for steak with grated parmesan and olive oil dressing. I get through a bag every few days on my own!

Wraysbury
Wraysbury in reply to PMRpro

Thanks x

Rache
Rache in reply to PMRpro

Thanks PMRpro. Yes one of my favourite treats is steak with just mushrooms and a vegetable such as french beans. Have tried courgetti instead of pasta but don’t like it much. . I was eating gluten free pasta already which I believe contains quinoa as well as rice flour so I’ve just been eating a much smaller portion with my bolognaise sauce. I have the ‘Eight Week Blood Sugar Diet ‘ recipe book plus a carbs counter book so just need to be more disciplined really!

PMRpro
PMRproAmbassador in reply to Rache

Beans of all sorts (and peas) are a bit borderline carbs-wise. I can't be bothered with substitute spag - I do use veggies as a substitute for penne-type pasta though. Same with cauliflower as a substitute for couscous or as a pizza base - far better as a roast/baked tray of mixed veg.

Rache
Rache in reply to PMRpro

You’re making me hungry

PMRpro
PMRproAmbassador in reply to Rache

:)

Have you tried roasting veg? The taste is much more intense and even brassicas become unsmelly and a revelation

Rache
Rache in reply to PMRpro

Yes - with some veg. Not tried brassica family roasted but will do

Just to clarify in case I’m making anyone feel bad by implying I always follow a sensible eating plan, I had a couple of slices of takeaway pizza followed by a large slice of sponge cake with fresh cream on Saturday. Put on 2 lbs right away ☹️

Wraysbury
Wraysbury in reply to Rache

I hope you enjoyed it! 😊

Marymon
Marymon in reply to Rache

Rache you make me feel better, as on Sunday I cooked for just for myself , full roast beef dinner which I haven’t eaten for years. Not keen on meat, certainly not beef. Anyway Roast Beef, Roast Pots, Yorkshire’s, Braised veg the lot .Ok ish, at least I have wiped from my mental menu.

Of course I cooked too many roast pots, and just HAD to eat them later.

Too scared to get back on the scales for a week at least.

Not worth it, just from boredom due to necessary restrictions in Tier 2

Rache
Rache in reply to Marymon

It’s good to get it out of your system or ‘mental menu’ as you call it - great expression! I agree lockdown makes it more difficult to resist. Life is hard these days 😟

Wraysbury
Wraysbury in reply to Marymon

It’s good just to splurge occasionally. X

Yes, thanks - it was worth it 🍕🍰

I still eat carbs, but in the beginning I dropped 10 lbs right away and managed to

keep it off, so fortunately no moon face...biggest change for me is when i started

doing more phyiscal work . We started buidling a house and I started helping,

I'm 67 and was still able to drop another mil , so down to 4mg per day and feeling

pretty good; I've had PMR for 18 months now

my fat red cheeks disappeared around 6 mg

Wraysbury
Wraysbury in reply to IslandRN

Thanks x

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