Feeling low about the way I look: I have a chipmunk... - PMRGCAuk

PMRGCAuk

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Feeling low about the way I look

Vaggers
Vaggers

I have a chipmunk face with ridges inside my cheeks because I I catch them between my teeth. I have persistent cold sores, fat pads above my shoulder blades, buffalo neck, piggy eyes and a big fat pad just below my Adams apple. I know this is the steroids. I have been reducing from 40:mgs since August and am now down to 20 mgs, hoping to go to 15 mgs next week. At what dose of steroids do the symptoms disappear? . I cant bear the thought of looking like this for years. I have had 3 people in the last 2 days fail to recognise me and do a double take. (Is the fat lump below adams apple normal for steroids)

69 Replies
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Hidden
Hidden

Hi vaggers, the good news is it does normalise but you have to help it a bit. A low carb diet will help. I am sorry you feel so down. I only got as high as 15mg but got cheeks and buffalo's hump. The fat shifts and yes the neck and I found the top of my tummy had a big roll of fat. I lost some weight and when I got to 10mg it started to even out. I have been at 7mg and I look like myself totally now... Albeit a few years older. I have linked you to an old post by polywotsit who kindly posted before, during and after photos. This may encourage you. 🌻

healthunlocked.com/pmrgcauk...

Ps yes biting inside the mouth is awful and I did have sore cheeks. 💕

Vaggers
Vaggers in reply to Hidden

Thanks Poopa, I am doing low carb diet and managed to lose 10lbs. It’s encouraging that the ‘fat’ might disappear as I lower the dose. Thanks also for the link.

Hidden
Hidden in reply to Vaggers

Well done. That's brillliant on such a high dose. I would tip my hat but I left it in the car. 😉👍💕

Yellowbluebell
YellowbluebellAmbassador in reply to Vaggers

I cant lose the weight so very jealous of your 10lb. YBB

That’s like a whole baby!! Impressed.

Hello Vaggers

So sorry you're feeling low. Your dose has been so high it's not surprising you've suffered all those horrible side effects.

You've explained something for me....it hadn't occurred to me that the reason I was biting inside my mouth was down to the fat deposits....I thought it was down to my dodgy teeth!

20 down to 15mgs sounds like a large drop. Hope it is manageable for you.

I can assure you that as you reduce the fat deposits do too.

Bon courage.

Vaggers
Vaggers in reply to IdasMum

Thanks for the reassurance and pleased ive resolved something for you ! I hope my drop from 20 to 15 doesnt bring about a relapse. Im being guided by my rheumatologist, fingers crossed

PMRpro
PMRproAmbassador in reply to Vaggers

That is a very large drop. In tapering no drop should be more than 10% of the current dose - that is 25%. If it doesn;t work, go back and try 2.5mg instead. If that doesn;t work - it will need to be 1mg at a time. It isn't slow when it works.

Vaggers
Vaggers in reply to PMRpro

Rheumatologist told me 40 for 4 weeks, 30 for 4 weeks then 20 for 3 weeks, and next week I start 15 mgs for 3 weeks. Then I see him again. So far I have had no breakthrough pain at all but am apprehensive of the drop to 15 mgs as this was the dose I was first given in August to which i didnt respond at all. I am on 20 mgs mtx so maybe this will,help.

Bridge31
Bridge31 in reply to IdasMum

I hadn’t realised either , I don’t have the moon face ( yet ) but I’m constantly biting the inside of my cheeks !

Yellowbluebell
YellowbluebellAmbassador

Hi, i only started on 15mg no where near as high as you and at 10mg now but i have got the moon face, weight all around my neck, a distended stomach and an extr 2 stone of weight. The weight was not helped by the fact that i ate the contents of my fridge each night. I finally cut the carbs but i didnt do myself any favours by munching. As poops says a low carb diet is essential to avoid excessive weight gain. Now you are tapering things will change but just keep an eye on those carbs!! We along with others on here will eventually recognise ourselves in the mirror again. X YBB

Thanks YBB. Its hard cutting carbs when you are sooo hungry and I do cheat. Think i need more exercise too.

Yellowbluebell
YellowbluebellAmbassador in reply to Vaggers

Eben thinking about having to climb the stairs one extra time tires me outx

PMRpro
PMRproAmbassador

It will go - but at what dose remains a mystery, like everything, in PMR/GCA everyone is different. And nothing comes from nothing - almost always YOU have to do your bit.

I gained a lot of weight with untreated PMR and then a lot more when I was put on methyl prednisolone. I was admitted to hospital for something else - and top of the diagnosis was "Cushingoid". I was switched to a form of prednisone and at the same time cut carbs drastically. The weight loss was slow as I couldn't exercise at all, I was on crutches, but over the following 18 months I steadily lost 35lbs in weight, most of which has stayed off for over 4 years despite at the time being on between 10 and 15mg pred and also similar doses for the last year. The first places it went from was around my midriff and my face. My doctors agree that there is no sign I am on pred.

If you have already lost 10 lbs you are doing very well - you will probably suddenly notice the changes without having done so before. I had packed clothes to wear at my daughter's wedding - with spare black trousers in case she thought my orange ones were a bit OTT. I tried the black ones on the night before - they promptly fell down! The orange ones were OK - just. I'd only bought them a few weeks before!

Vaggers
Vaggers in reply to PMRpro

Thanks PMR. I will persevere with low carbs which is hard when you feel so hungry.

PMRpro
PMRproAmbassador in reply to Vaggers

That suggests you aren't really eating low carb or you aren't eating enough of what you can eat: protein and fat in the forms of meat, fish, eggs and cheese. Are you eating a lot of fruit and root veg?

Have a look at dietdoctor.com/low-carb

Vaggers
Vaggers in reply to PMRpro

I am eating loads of fruit and veg (which i never used too, I hated them both) also craving eggs and sprouts! With anti social results!

PMRpro
PMRproAmbassador in reply to Vaggers

Cut the fruit - loads of sugar, healthier maybe but still sugar. Lots of people make that mistake.

Yellowbluebell
YellowbluebellAmbassador in reply to Vaggers

I didnt realise when i eventually decided to eat low carb how high in carbs fruit and veg were!! I thought eating loads of fruit was the perfect replacement for my sweet tooth but poops and pro sent me links to low carb foods and i realised i had just swapped one pile of high carb foods for another!!

Ive got a lot to learn re this low carb diet. Like you the fruit has been a replacement for my sweet tooth.

Hidden
Hidden in reply to Vaggers

If you scroll to the bottom of the page on this link... Seems to get more adverts evrrytime... There are links to lists of carb content of many food. You can have soft fruits in limited amounts. I like a full fat Greek yoghurt with fresh passionfruit or blueberries in it. Frozen blueberries can be used and if you stir them in frozen and leave fo a minute.... . Yum.

ditchthecarbs.com/guide-to-...

Vaggers
Vaggers in reply to Hidden

I love full fat greek yoghurt but have to sweeten a bit with Truvia. I suppose i could top it with sprouts as i crave them so much!!

Hidden
Hidden in reply to Vaggers

🤣🤣🤣 Not sure but I love sprouts in my stir fries too. I think I am the main Xmas sprout eater in my family.

IdasMum
IdasMum in reply to Vaggers

More protein more fat. I know it sounds wrong and seems to be counter everything you have been taught over the years but it will assuage your hunger.

Now tell me :D

When I am being good and I am hungry I go for cheese or cold meat or hard boiled eggs. It stops the hunger really well. Won't tell you what I go for when I am bad but I can tell you that it means I am hungry again within an hour.

PMRpro
PMRproAmbassador in reply to IdasMum

I only get hunger pangs an hour or two after carbs. And the next day after the pizza treat ...

IdasMum
IdasMum in reply to PMRpro

Pizza - Treat...... thankfully not in my book lol

PMRpro
PMRproAmbassador in reply to IdasMum

French pizza? Um, no!

IdasMum
IdasMum in reply to PMRpro

No pizza :)

Sorry we seem to have hijacked your post Vaggers.

Hidden
Hidden in reply to IdasMum

Not a hijack...just before I was first diagnosed I had had a brand new kitchen fitted and had treated myself to mixers etc. I first 6 weeks while I felt OK at 15 to 13mg I made the most delish massive pizzas from stratch. They had loads of spinach and toms, peppers, mushroom, olives and 3 cheeses. They were like dustbin lids. I couldn't manage the whole thing obviously thank god but it contributed to my moonface... Having pizza for breakfast 🤭.... Then I started low carbing.... 🤓

IdasMum
IdasMum in reply to Hidden

lol

I have a new cooker. Cakes are my thing. It's a "Bake Off" cooker but I am not a Bake Off baker :D

You can keep your Pizzas :D

PMRpro
PMRproAmbassador in reply to Hidden

I made pizza for me using a sweetpotato wrap - it's mostly about the toppings anyway although I steal OH's "bones" when he has pizza and I don't ;)

Hidden
Hidden in reply to PMRpro

Yes I think the fillings are the pizza. But the veg tastes better after sitting on the base with a bit of tomoto sauce and cheese on top. I tried just cooking veg that way in the oven but eaten off the bread base tastes different a bit like fish and chips tasting different in paper outside. 🍟

PMRpro
PMRproAmbassador in reply to Hidden

I no longer make my own pizza - that was a one-off in the vegan daughter's place! Alte Post rules when it comes to pizza here!

Hidden
Hidden in reply to Vaggers

The main thing is to ensure you eat enough fat. I have more butter and olive oil now. Not buckets full but veg with butter melted on them are far more satisfying and actually slow down the release of energy so your appetite for the carby or sweet treats is reduced. I recently had to go back to white bread and pasta etc before a medical procedure and it was hard trying to stop weight even in a week. I felt bloated. I have to eat low residue food again for a week soon and am dreading it. I miss my nuts and seeds and if I have bread I have wholewheat seeded in the freezer. I munched on a small handful of nuts anith half the amount if raisins. I like celery so had that and cucumber. I am a big woman so even having lost 2 to 3 stone I am bigger than many... 😁🌻

Yellowbluebell
YellowbluebellAmbassador in reply to Hidden

If i eat soft or cream cheese on celery is that still low carb. If it is i have just found my perfect snack as always loved cheese and celery.xx YBB

Hidden
Hidden in reply to Yellowbluebell

Absolutely. Full fat soft cheese only. But obviously not a whole tub and head of celery... 😉

Yellowbluebell
YellowbluebellAmbassador in reply to Hidden

Ususlly a couple of sticks were more than enough. This is brill news.xx

Hidden
Hidden in reply to Yellowbluebell

I like peanut butter too.

SheffieldJane
SheffieldJane in reply to PMRpro

Orange trousers! You go girl!

PMRpro
PMRproAmbassador in reply to SheffieldJane

They are VERY orange - teamed with a long burgundy coat. Austria does make sure larger ladies can stand out! I just wasn't sure the UK could cope ...

IdasMum
IdasMum in reply to PMRpro

OMG..........it's an image I cannot begin to imagine lol

Hello Vaggers, I’m sorry you are feeling like this and think everything has already been said ...but can certainly sympathise/empathise re the chubby cheeks etc. PMR May 2015 and started on 40mg-reducing to 20mg, 15mg, 10mg every 2 weeks-hadn’t found this forum then. I actually lost well over a stone in a month-wasn’t big at the start but definitely had the fat face -and you have reminded me about the misery of biting the inside of my cheeks. The moon face slowly disappeared under 10mgs of prednisolone daily though I have put the weight back on sadly -been too content eating pasta, drinking wine and having good holidays to count carbs —getting back on track now. It does get much better honestly. All good wishes x

Vaggers
Vaggers in reply to Maisie1958

Thank you Maisie. Your steroid dose sounds similar to mine, quite a high start. I now feel, maybe, that if I can get to under 10 things might change.

Maisie1958
Maisie1958 in reply to Vaggers

To be fair most of my friends-and husband (not the most sensitive of beings) said they couldn’t see a difference my face -however I did get a lot of people saying how well I looked!

A very long standing friend said “well you always had a round face” -unfortunately true, so I honestly think in retrospect we worry about our appearance too much, other people aren’t that observant . Easy to say after the time but prednisolone has let me have a very good life over the last four plus years. All good wishes x

Yes I have that fat blob under my throat and swellings on the clavicle bones. Got them quite quickly. I still have it, I have looking at my neck area, but what can you do. Some days I think it looks a bit better but then it looks just as bad, wishful thinking. These things will go eventually. I suppose we are all different at what stage it goes.

Yellowbluebell
YellowbluebellAmbassador in reply to powerwalk

I hate seeing myself in a mirror!! Over the last 8 months we have had various family occasions where there has been a lot of photo taking and i am always trying to find a way to look thinner in them. Not helped when my mother who i dont see that often but who knew i had put on weight turned to me in august and said "oh you HAVE put on a lot of weight havnt you?" I ignored her but spent a few days imagining her falling off her broomstick!!

Oh that's funny!!the broomstick!! Know exactly what you mean, I've banned photos of me. I just can't bear it. Drives my husband mad!! If i see myself in a photo I get into a real low mood. It just doesn't look like me. The joys!!!! But you gave me a giggle!

Yellowbluebell
YellowbluebellAmbassador in reply to powerwalk

I amused myself thinking about her as well!! My OH is the same and cant understand my wish to hide behind people or better still be looking away completely. He is great normally but me hiding from mirrors etc does his head i !!

Oh Vaggers I do empathise with you. It will correct itself to an extent, we can help it by being careful of our diet. I heard a snatch on the radio(4) saying that diets were pointless and it all depended on our individual biochemistry. This scientist ate a diet with plenty of pasta and bread and nothing happened to his blood sugar. When he consumed plenty of red grapes and orange juice, his bloods went up to diabetic levels. His wife was the complete opposite. I wish I heard more. I know there is something really unfair going on and it seems that science is looking at it.

I have had that neck thing because I thought it was thyrotoxicosis coming back. Photos are a torment ( I am banning them).

You are lovely and nobody loves you because of how you look, it’s how you make them feel. Onward sweetheart!

Thankyou so much SheffieldJ / everyone is so kind. I feel better already. I sent my lovely sister a horrid picture of myself featuring fat pads, cold sores and giant chipmunk cheeks, she said I did look pretty gruesome but she still loves me! Thats all that matters.

Thelmarina
Thelmarina in reply to Vaggers

I get so bored with same old face in the mirror. I think someone should invent a button for changing your face when you want. Then I would have thick black hair, bright blue eyes, pointy chin - oh yes please! Currently on three - and delicate nose....sigh....

They did! Apparently the young are always trimming away at their pouty selfies and adding filters and whatnot and they are already pretty.

😂

PMRpro
PMRproAmbassador in reply to SheffieldJane

Grapes and orange juice will have loads of fructose - the pasta and bread next to none. The grapes and orange juice are almost certainly a far higher GI than pasta and bread which will release glucose into the blood much more slowly. Scientist you say?

SheffieldJane
SheffieldJane in reply to PMRpro

I thought I’d slipped that past you 😂😂😂.

It was a science programme, probably promoting a book. It was about how we all metabolise various foods differently. Hence the skinny friend ( and my husband and son) who appear to be able to eat hugely of everything and never gain an ounce. Whereas I eat very modestly and blow up like a barrage balloon.

SheffieldJane
SheffieldJane in reply to PMRpro

The programme on radio 4 was “ You are doing it wrong”. Diet, Adam Buxton. It is available on BBC iPlayer for about 4 weeks. Exploring why the diet industry doesn’t work.

Apologies to those who can’t get BBC.

Really sorry you feel this way, but remember it truly is what’s inside that counts! I’ve hit a bad patch, too...looked in mirror & wondered who the old hag is who stared back! Decided to dye my hair as white streaks are everywhere suddenly but mixed with all colours! I lost 10lb on low carb diet in 3 weeks (on 16mg Pred). It’s appallingly hard, I’m cold & hungry. All the weight went from my waist...the only good part. But this week half a stone has gone back on! What? I developed cystitis & apparently you can get fluid retention with it (is this connected with PMR?) I think I’ve been eating too much protein & not enough fat. Good luck with your ‘everything’!! I’m only six weeks into my PMR, & have agreed 16mg for another 2 weeks, then 15mg for a month, with my doctor. I’m heavily overweight due to putting on 3 stones 4 years ago due to Pred for chest infections. Chin up...or in my case, chins up!

Vaggers
Vaggers in reply to Pixix

Good luck to you too Pixix. I think its a long road but it seems this lovely forum will help us through.

Pixix
Pixix in reply to Vaggers

Oh, yes, these lovely people know so much & are very helpful...I was lucky to find this forum so quickly when diagnosed last month!

PMRpro
PMRproAmbassador in reply to Pixix

Most dietary changes of that sort will result in a change in fluid balance and for some, not all, people that will result in a massive quick weight loss which later balances out, apparently leading to a gain in weight. Was anything different about your diet last week? More salt perhaps? And if you are hungry - you probably need more non-carb foods to fill up. Bulk is also important.

Pixix
Pixix in reply to PMRpro

We went away to visit family...my daily fluid intake dropped off a lot, so thought I’d lose weight, not gain it! Two meals out & very good...no dessert, just meat & salad & veg each time. But just weighed (normally only weigh each Monday) & back to 11 lb loss in just under four weeks. Thanks for your help!

PMRpro
PMRproAmbassador in reply to Pixix

When you are drinking less all of a sudden your body worries this is a drought situation and retains what fluid it can get. When we eat out a couple of times in quick succession my feet are noticably puffier - the salt I don't use at home!

Pixix
Pixix in reply to PMRpro

Thanks. Yes, I’m pretty sure this is the answer. I really dislike water on its own...have tried lemon juice in it, green tea, all sorts...it’s becoming the worst part of the keto diet...because it’s winter, I’m not thirsty! I’m building it my extra low sugar Ribena twice a day because at least I know I will drink two pints that way...& constantly sipping water! Roll on summer!

Best results drop 10% per month not 5mg in a week.

Hi vaggers, I too am feeling low about the way I look, I seem to have similar issues to you, fat cheeks, a horrible double chin and Turkey neck, swollen eyes and content sore cracks in the corners of my mouth, I've not got the lump on the back of my neck yet but I'm sure it will come, I am starting to get the pot belly too, which looks a bit odd because I'm only 8 stone 2 at the moment which seems to show everything off more. I started on 40mg in September and I'm only down to 35mg so I've still got a long way to go. I cut out all carbs to start with and lost a stone and half but it hasn't stopped my moon face appearing, though it may have been worse if I hadnt, I've been a bit naughty lately but going carb free again starting tomorrow, I'm dreading the weekend as I'm meeting up with two old school friends that I havnt seen since starting on the prednisone , they will definitely see a difference in my appearance, they both know about it but I remember one saying a few years back that one of her friends was taking steroids and she looked awful so I'm assuming she will think the same about me.

It's not just the way I look either, I'm still not feeling great on the pred, still getting what I call my steroid face burn, I'm covered in bruises on my legs, I think my muscles are disappearing, I keep getting a funny feeling in my body that makes my bones feel wierd, it's quite hard to describe, and over the last week I seem to have started getting shaky hands, don't know if that is to do with the pre d or not, I'm seeing the rheumatologist on Tuesday and having a dexa scan same day so will ask about it. Let's just all look forward to the day we are off them and looking and feeling more like our old selves (or should I say middle aged selves, I'm only 53😊)

Vaggers
Vaggers in reply to Poppylop

Poppylop, I am sad you feeling this way and I completely emphasise. My muscles have gone and I also get terribly trembly hands, now and then. I cant pin down what is causing them to tremble as it is so random. I also have been referred to ophthalmology because I now have a cataract which I didnt before. Write down all your questions for the Rheumatologist on tuesday. I leave a space to write the answers too in case I forget! Thinking of you.

Poppylop
Poppylop in reply to Vaggers

That's a good idea because I always remember something i should have asked after I've left

Have you had full thyroid lab tests done? If done properly, they would include FT3. You can request and get the printout of your lab results and the lab reference ranges that were used.

I was really worried about this when first diagnosed back in March but was lucky and lost a stone

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