I was diagnosed with GCA 12 months ago and reductions in Pred had not been successful until the Dr added in MMF which has ‘allowed’ me to reduce to 12.5mg. My face looks as though it has been pumped up ( not wanting to sound vain but this is a great source of unhappiness to me) before diagnosis I had lost a lot of weight but during the past year I have put the weight back on and more besides. After Christmas I cut down on carbs and calories and went alcohol free, to my great disappointment my weight stayed the same. My shape is totally different pre Pred - I don’t just have extra stomach fat, it starts higher up ( chest area) and extends to my stomach. I have even found putting my socks on a challenge as this extra ‘fat’ is quite hard/rigid. Before GCA I was 7 stones or thereabouts with no excess weight. I do not recognise myself or my body shape and worry that this is now my norm. my confidence/self esteem is greatly affected and for once I’m grateful to be shielding as I can hide away. has anyone else had a similar experience and if so were you able to reduce weight whilst on Pred and at what dose can I hope the ‘moonface’ to reduce?
At what dose of Pred does ‘moonface’ reduce or di... - PMRGCAuk
At what dose of Pred does ‘moonface’ reduce or disappear?
I just want to assure you that you're not alone in experiencing a change in body shape as many here will tell you. I have exactly the type of stomach fat you describe. I gained a stone in weight since starting on Prednisolone and don't seem to be able to shift it in spite of eating healthily-low carbs, fruit and plenty of veg, no processed food or sugary drinks/snacks. You will have lots of advice coming your way, I'm sure. Don't despair!
I know how you feel. Photographs taken of me appalled me at first but now I know what to expect it’s not so bad. I also identify with the stomach problem. You’ve described it to a T. Mine starts under the bust and I resemble a pregnant woman! In fact, my daughter, who is pregnant suggested maternity leggings. Initially I was affronted but they are actually very comfortable. No cutting elastic waistbands! I bought some which have fold down top which come up under the bust but can be folded down to the normal waist area when things hopefully improve. They are H and M.
I suppose it’s something we have to accept for a while since there is no alternative to the medication. I try to remain hopeful about the future as for the majority the disease is self-limiting. People have posted photos on this forum showing a return to normal after lowering or coming off pred. I wouldn't hide away although as you say we don’t see many people anyway these days. Life is short and we have nothing to be ashamed off. I don’t care what anyone might think. I am at the stage of trying to very slowly reduce to 5.5mg and I think my face and neck are reducing also! I imagine it varies how soon it begins to happen but it WILL 🙂
Hi
I know the feeling, I’ve put on over half a stone, I know it doesn’t sound much but it’s enough for my clothes not to fit. Let’s hope it comes off soon 😀 xx
" I cut down on carbs and calories"
What ARE you eating? And how many or how few calories? Four weeks is not very long though - some people need a while to start losing weight. And although I lost 35lbs of pred and PMR related weight while still on pred it was very slow, often only half a pound a month,
I often see people saying they have cut carbs but aren't losing weight. When I ask, it often turns out that they are eating a lot of fruit - and at current supermarket sizes it may only take an apple or a banana to take you to your personal carb limit for losing weight. Snazzy and I both have to get pretty low (20g or so of available carb a day) and a single banana takes you to that. Root veg - and that includes sweet potatoes and carrots - are also sneaky contributors.
I’m eating less carbs and less calories. But yes, I do eat fruit - banana, apple, orange every day and berries and yoghurt for my breakfast. I thought I was doing the right thing 😞
You are in the sense of healthy eating - but a banana is over 20g carbs, an apple 14, an orange 12 (mainly it has to be said due to the super-size things the supermarkets insist we want) berries are low but even a plain small yoghurt has 4g. Add that together and you come to 50g carbs before you add anything else you eat. It is healthy - but in the context of pred and carbs it all adds up.
And the harsh truth is that we are all different and for those of us for whom carbs mean weight gain we have to be even more disciplined. The only way you can know is by keeping a diary including the carb scores - and really thinking about how you cook. The good news is that it is weight loss that means small amounts - once you get to maintaining weight it is a lot easier. Some people can cut the processed carbs - the packaged baked goods that are so obviously carbs - and that is enough. Some of us have to work harder.
It is easy with google because you just ask it "how many carbs in ... " and it tells you, there are apps for the technogeeks (not me) that work it all out. I find this site
which has really simple visual guides - images with carb scores next to the picture -very helpful. Learning the basics - the carbs in particular foods means you know what to avoid or restrict and what you can eat and not rack up the carbs. You don't need to join anything - just read and learn.
That’s really helpful I’ll have a look thanks. I feel I need to keep my yoghurt, milk consumption up for my osteoporosis. Do you think if I made my own yoghurt it would be better? I will take a look at the link ( I’m presuming white wine will be down as a no no 🥲). Thanks again
I think white wine in moderation comes under the heading of taking care of the mental health. Or am I deluded? Keep well hydrated. 🤣
Making your own doesn't really help - you are making it from milk and it is the lactose (milk sugar), carbs are carbs and it does all add up.
I'm sure wine probably is a no-no - but if you take the carbs level that works for you to lose weight then you can also choose where those carbs come from. Nothing is forbidden in that sense - a slice of toast and a glass of wine have carbs but if you cut other carbs you could fit them in for a treat.
Have you seen Idasmum's posts about her dieting success?
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Then you can switch to the 5:2 diet where you can eat normally for 5 days a week (without going mad) and 800 cals for 2 days to maintain. Or use another form of intermittent fasting - 16:8 lets you eat normally for 8 hours and fast for 16 and works for many to maintain weight.
If you want to lose weight/fat there has to be more discipline at first and then you can relax some, but you cannot go back to the old eating patterns that got you there to start with.
I think you need to take this concern to the doctor and find out if something more than pred side effects is going on. I don't know anything about MMF, but apparently it is another immune suppressant, and perhaps it has some unwanted side effects also?
I had exactly the same problems and the same issues, having had an eating disorder in my teenage years it really seemed a nightmare! I cut out carbs, almost to 20mg a day, and I didn’t put on excess “weight” but blew up like a balloon so I bought elasticated waist jeans and baggy jumpers!! I am now at 6 mg and I look much more like myself, I would say that from 10mg downwards I started to loose the fluid build up- even my skinny legs were like tree trunks. Like you I didn’t need to lose weight I just didn’t want to put it on, I have been on a very low carb diet since the beginning of 2020, I still have a glass of wine and eat sweets occasionally. Hang in there, I can truly empathise but it does definitely reduce below 10 mg- at least it did for me. Good luck and remember that it is all helping the terrible pain polymyalgia causes.
I found that at 10mg my ‘Moon Face’ started to melt away, almost without me noticing.
I lost 2stone last year but had to increase my Pred towards the later part of the year. I’m on a Low Carb Eating, No Wine & Reduced Sugar. Despite the increased Pred there’s No Moon Face but a thickening in my waist & tummy.
I may have been a little lax since Christmas & had the odd goodie but l’ve been feeling so awful in general that l lost a bit of motivation. I think you will find it improves once you get to 10mg.
The extra band it causes around the middle can be quite hard & l concur trying to put socks on is not easy!
I was on 12.5mg Pred when l lost my weight, maybe you need to write down what you are eating each day & see exactly what you are eating.....
I’ll send you a link to My Story which might give you some encouragement, l’m back to a Stricter Regime for February so l’m hoping to loose a couple of pounds 🙏🏼
Don’t despair, we’ve all been there, some of us more than once.
Wishing you Luck 🍀
MrsN
My fat cheeks subsided significantly around 7 mg and were gone at 6 mg🤗
The combination of changes caused by weight gain, alongside other possible pred-related bodyshape and hair changes have affected my confidence too. It will get better as you reduce your pred dose. The 'hardness' of my under chin area and across the top of my back started to soften when I reduced to 9mg/day. The moonface and hardness across my chest (you describe it perfectly) is starting to soften now that I'm down to 8mg. I've put on a lot of weight though, so I'm not expecting the 'softer' more normal signs of weight gain to reduce just yet!
I do so sympathise with you! After 18 months on Pred I too look entirely different. My hair is very thin—— 3/4 gone, I have huge boobs which swelled up four inches, three months ago, in five days! They are bigger and heavier than when I was pregnant! ( I have just turned 79 years old) My lovely waist has disappeared completely. I have fat jowls and I have slowly put on 21 pounds in weight even though I tried to stick to a low carb diet from the beginning. I had a really good figure before Pred! The carb craving is horrendous. I don’t know this woman in the mirror——and yes, I wasn’t bad looking and of course I was vain!
My latest bloods show high hormones! At my age! I have googled it and there is very little info about steroids and raised hormones, and huge breasts.
I have been on 8 mg Pred for two months after a flare and am struggling now to get down to 7.5 on the DSNS taper at the moment.
However when I flare and the pains return I am grateful for Pred!
Sending love ! Xxx
I am so grateful to all of you for your replies, your support, knowledge and empathy, glad to know I’m not alone but sad to think so many are in the same boat.. life changing. Thank you again for taking the time to reply, I’ll take all of your wisdoms onboard 🌈
I can so sympathise with your upset. It is one of the most demoralising things during this treatment. People are getting good results from the Keto diet. My husband and I are going to give it a go, we have become a pair of pudges. Our son eats twice as much as us and he’s as thin as a reed, so unfair. I’ve bought a recipe book. I love carbs but they are our enemy. That pumped up look does go somewhere under 10 mgs. You are so tiny, I think you will be able to do this and get good results. In the meantime no photos and full length mirrors for me. It is the Pred. My weight was falling off at 3 mgs then I got newly diagnosed with GCA/LVV back up to 40 mgs and blew up - not so much the face, this time.
Thank you for sharing. Good luck with the Keto, I’ll keep an eye on here for your progress ! You and I have similar stories with regard to GCA, Pred, glaucoma, I’m wishing you well 🤞🌈
Thank you for this. The recipes don’t look too bad.
My Slimfast friend lost 4stones so I listen when she speaks. Vegetables eggs meat, no sugar at all, go easy on fruit, oily fish good, lots and lots of water. Forget alcohol. Vitamins and minerals plus Dead Sea salt baths. Lots of sleep/secs if poss. I’m in awe. Currently on 10mgs pred. Reducing to 5/6 hopefully next 6 months.
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