Shape: As you have been discussing areas of pmr on... - PMRGCAuk

PMRGCAuk

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Shape

Bubble56 profile image

As you have been discussing areas of pmr on a “lighter note” I am curious to know if anyone feels like me???? Since I started taking prednisone 2 1/2 years ago I have avoided looking in mirrors. Now just back from a holiday…yay…. and the hotel bedroom had mirrors everywhere 🙀. Oh my goodness my shape has changed horrifically, has anyone else had a problem, not necessarily weight gain but shape gain😂?

107 Replies

Yes, it’s quite normal (but it is reversible) to get that Pred shape. I got it without any weight gain from a slender frame. It rather resembles an orange for the body with cocktail sticks for limbs and a marshmallow for a face. However, I repeat, it doesn’t last forever. Some puffiness can be avoided by lowering salt intake quite hard, especially round the eyes. I know this is a bit frank but I wasn’t sure how to sell it 🙂

Bubble56 profile image
Bubble56 in reply to SnazzyD

😂…. Love the analogy!

Me too! 😂 xx

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

Textbooks actually refer to it as a lemon with cocktail stick limbs!!

SnazzyD profile image
SnazzyD in reply to PMRpro

Trouble is a lemon suggests one’s contours go in at some point!

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

Not the one sitting in my fruit bowl at present ;)

Bubble56 profile image
Bubble56 in reply to PMRpro

My father once told my mother she looked like a “misshape out of Thorntons” - she was nearly 80 and didn’t take offence but I have quoted that many times in the past 2 years!!!!

PMRpro profile image
PMRproAmbassador in reply to Bubble56

Not very friendly - just as well she loved him :)

Constance13 profile image
Constance13 in reply to Bubble56

Don't think my husband would look so good afterwards if he said it about me . 👿

SnazzyD profile image
SnazzyD in reply to PMRpro

Well that’s the non-uk fruit for you!

Longtimer profile image
Longtimer in reply to SnazzyD

Me...bumblebee....

Flivoless profile image
Flivoless in reply to SnazzyD

Oh! but I've always looked like this.😱

SnazzyD profile image
SnazzyD in reply to Flivoless

We’ve all got our general body shape though, the pear, the aforementioned citrus fruits or in my case a courgette (once over40) with a couple of peas stuck to it. However, once the Pred reduces the muscle mass and makes the limbs skinny it accentuates it. The movement of the fat deposits either makes it double extra of the same or a perplexing transformation. Keeping weight down and avoiding fluid retention where possible really helps.

Flivoless profile image
Flivoless in reply to SnazzyD

"fluid retention" I wish. Since taking pred my bladder is acting more like a colander.

SnazzyD profile image
SnazzyD in reply to Flivoless

Sadly you can have both. It’s a joy isn’t it?

Maudie19 profile image
Maudie19 in reply to SnazzyD

That is interesting about the salt, as I do love it! I feel my eyes are disappearing into my face.

artfingers profile image
artfingers in reply to SnazzyD

"It doesn't last forever" well, that depends on if one is ever able to reduce and get off pred. So far, not me. Sigh. I resemble tweedle dee and tweedle dum - big belly, bigger thighs and butt. Hate it.

Not both at the same time tough! 🤣

SnazzyD profile image
SnazzyD in reply to artfingers

What dose are you on?

artfingers profile image
artfingers in reply to SnazzyD

I was on 6 1/2 prednisone (split am and pm) until 3 weeks ago but had a bad flare so now am at 8 mg prednisone (3 at night, 5 in morning). Nursing ill husband, family members with Covid, lots of stress so not reducing, instead had to go up in dosage just becuz of issues with legs, knees, inability to walk. 8 mg seems to be working. I see my Rheumy tomorrow.

Yes, totally with you. I won't get into photos!!! Hope you had a nice holiday even with the mirrors ☺️.

Bubble56 profile image
Bubble56 in reply to powerwalk

Thank you, I feel a bit happier now.🙈

Sharitone profile image
Sharitone in reply to powerwalk

All very well, but I've got to renew my passport and that face will haunt me for 10 years!

powerwalk profile image
powerwalk in reply to Sharitone

Yes dreading that one!!! Cos i wont be off pred any day soon, if ever acccording to endo guy!! 🤨

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to powerwalk

you may not be off Pred any day soon, but at lower doses you should lose weight and get back to more like "normal".

powerwalk profile image
powerwalk in reply to DorsetLady

Yeah, i'm only on 5.5 but just cant seem to lose that puffy element!! And heavy feeling puffy tummy!! Id love to even get to 4.5 though been told to stay at 5, but i had to put that quietly to 5.5🙂. Maybe some day. Ill keep trying! Tks.

PMRpro profile image
PMRproAmbassador

I gained weight during the 5 years I had PMR without any treatment - I couldn't exercise properly and I comfort-ate in the afternoond - didn't know what I wanted to eat but sweet and carby filled the bill! I was just overweight all over then. Then I was finally diagnosed and started pred - I could move again and wasn't in pain so no longer as disabled and I didn;t gain any more weight. But the fat deposits moved to the usual places - around my midriff, back of my neck and a bit to my face but not typically Cushingoid. Later I was switched from prednisolone to methyl prednisolone - and I gained weight and became properly Cushingoid - that was the top of the list of diagnoses when I was admitted for something else.

A few months later I was switched to prednisone because i was having awful adverse effects with the methyl prednisolone and about the same time cut carbs a lot. Within weeks my trousers were falling down as the fat around my midriff just melted away! It posed a problem at my daughters wedding as the black trousers I had as spares were far too big - in 4 or 5 weeks! The trousers I had bought for the wedding JUST stayed up but it was a close thing! I've been on pred since, a lot of the time at above 10mg but the midriff fat has never returned in the same way. I have a waist - albeit rather bigger than I'd like ;) and definitely just chubby, not Cushingoid and no proper moon face any more.

Bubble56 profile image
Bubble56 in reply to PMRpro

In that respect you are fortunate. I know it shouldn’t matter and I’m very grateful I can walk and cycle but still, in my head, it does matter. Hey ho life goes on . Maybe if I didn’t drink quite so much 🍷🍷😂

PMRpro profile image
PMRproAmbassador in reply to Bubble56

Ah yes - but I did have to work hard to lose the pred-associated weight and where it was. And even so - during that period I banished mirrors and my idea of a hellish hotel room is one with mirror doors on the wardrobe or all over the bathroom!!!!

Yes, I look very different! Like you, I avoid mirrors and photos as much as possible. Have gained only a couple of pounds since starting pred ten months ago, but oh my!! My stomach and face are much puffier and flabbier, yet at the same time my eyes are small and I look so gaunt! Honestly I hardly know myself 😟

I think some of it is down to lack of exercise, but when I try, my joints and muscles hurt so much, I simply can’t do it.

Hope you had a great holiday despite all this 😊xx

We did have a lovely trip- to Iceland so wore lots of baggy clothes……. Covered a multitude of sins but swimsuit required at the Blue Lagoon spa!🙀

Sounds brilliant Bubble 😊Well done!

Btw a lot of my pain is down to osteoarthritis and osteoporosis - so PMR not entirely to blame. I eat relatively low carb - about 100g a day - but evidently not low enough! 😖🤷‍♀️x

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

Snazzy and I need to be about 20g to lose weight ...

Nextoneplease profile image
Nextoneplease in reply to PMRpro

Oh, I know Pro! It’s just that even my breakfast muesli (to which I add chia seeds and walnuts) comes to 25g. Add a couple of oatcakes with cheese for lunch at 5g each, and some fruit at maybe 15g, and I’m halfway to 100 already! I just try to make sure everything I eat is nutrient dense. And I stick to 1500kcal a day…..

I realise I won’t lose weight like this, but I hope I’ll be well nourished at least 🤞x

The only fruit you can eat if trying to do low-carb are apples, pears and berries, always in moderation. My basis for eating is about 20g of carbs or less, a massive plate of vegetables eg cabbage, cauliflower, but I aim for as big a variety of veg as possible, about 100g of protein (a small piece of chicken etc) and fats to make it all palatable. I have butter, cheese, olive oil, MCT/coconut oil. weight loss is slow but I lost 9lbs last year. I don't count calories. I avoid potatoes, rice, pasta, sugar and bread apart from very occasionally

Thanks for this tangocharlie and well done on the weight loss 😊

You know, I think I could eat like this (and enjoy it) if I lived in a hotel! The trouble is, home to me spells comfort eating, which means cereal for breakfast and a small amount of pasta etc. I’m hopeless!!! But I have cut out any rubbish over the years, and I eat well, just not for weight loss 😋 I will keep bearing down on the carbs and see how I go ….

Thanks again xx

I gave up breakfast years ago as it is usually carb-heavy, or if you do keto, eggs and bacon which I couldn't do every day. If you are already eating well you probably only need a few tweaks to switch to weight loss. I'm most motivated to try and improve my health, weight loss is a bonus x

Not good to skip breakfasts with diabetes though?

Don't know - that's one for the doc to answer. I don't have diabetes.

Nextoneplease profile image
Nextoneplease in reply to PMRpro

What can one eat to maximise the 20mg?

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

I eat a lot of salad and above ground veggies plus cheese, fish, meat, eggs. I don't count calories, too much like hard work! Very little fruit and normally no bread/cakes/pasta/rice. Not been very careful the last few months, I will get back on track for Lent ...

Nextoneplease profile image
Nextoneplease in reply to PMRpro

Thanks for this 😊 I’ve done something similar before (the Atkins diet - remember that?- with OH) and have lost weight, then put it straight back on as soon as I relaxed. Think I could do it if someone else made all my food, and if OH didn’t love potatoes, but neither of those things are true…..🤦‍♀️

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

I do find sticking to it quite easy really. Just slacking and comfort eating I suppose. Having a can't be bothered week ... Fed up with "proper" meals. And cooking!

Nextoneplease profile image
Nextoneplease in reply to PMRpro

Just thinking about it makes me desperate for a piece of fruit cake - which I never eat usually! So much of this is in the mind,I think 🤔

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

I've been eating the local answer to UK xmas cake - but I can restrict myself to a pretty small piece - it'll last me to the end of the month at least! I had bought one but was given 2 more. Be rude not to eat them ;)

Andymurph profile image
Andymurph in reply to PMRpro

Is there such a thing as "a small slice" of panettone ? Asking for a friend.

PMRpro profile image
PMRproAmbassador in reply to Andymurph

Ah no - not panettone. Zelten. Heavy rich fruit cake :) And Stollen.

I did have a relatively small slice of panettone at xmas though - it was a very tiny panettone in the first place. Maybe 10cm diameter. More like a muffin. I did wonder if they intended it to be a single portion ;)

Nextoneplease profile image
Nextoneplease in reply to PMRpro

I make a ‘brack’ or fruit loaf, which is almost entirely dried fruit soaked in tea, with one egg, a little sugar and flour. Naughty but nice! A 1lb loaf lasts me 2-3 weeks and I make a couple a year, just to keep me positive 😀

SnazzyD profile image
SnazzyD in reply to Andymurph

Technically not possible

The moment I think diet I find myself baking a chocolate cake! 😱😅

Fruit cake or even lemon drizzle or carrot cakes are my favourites 😋 I tend to bake them with my grandson and send most of them home with him - limits the damage to me while still giving us both the pleasure of baking 😊I also gather he shares them with his friends….it’s a win win for us!

Theziggy profile image
Theziggy in reply to PMRpro

Lent for the year 2022 starts on Wednesday, March 2nd and ends on Thursday, April 14

PMRpro profile image
PMRproAmbassador in reply to Theziggy

I know - it is actually VERY difficult to miss here ...

I think the gauntness isn’t helped by the dark circles round the eyes. For me that panda look was the worst bit.

tangocharlie profile image
tangocharlie in reply to SnazzyD

my eyelids have disappeared too

So have mine!!! 🥺

SnazzyD profile image
SnazzyD in reply to tangocharlie

Yup, we’re not exactly selling Pred are we?

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

Dunno - I had some pretty nasty effects with Medrol (methyl pred) but never said I'd rather not take pred - and the Medrol was by far the least effective of the steroids I've taken! Five years of PMR pain had been more than enough!

So have mine but they have slipped 'under' my eyes - horrid! Pouches!

Yes that's a good description!

I think I know what you're getting at. I seem to have lost my waist and gained a beer barrel! For the first time ever, I have a double chin....but on the upside, that means a spare one.... and it seems like instead of being lean and trim I'm now more blobby and 'full fat'! All joking apart, the change in shape is probably inevitable for some people as some of the side effects of steroids can cause water retention (hence puffy ankles, legs, moon face, etc) and weight gain because we metabolise sugars/carbs differently and deposit it down more readily as fat...particularly around the torso.

tangocharlie profile image
tangocharlie in reply to Kendrew

' lost my waist and gained a beer barrel!' love that description! You've made me laugh today, thanks

Kendrew profile image
Kendrew in reply to tangocharlie

👍👍😄😄

I looked in the mirror and thought I am glad to be behind my face........except the chicken neck disappeared and the wrinkles disappeared with the Moonface. I was quite sad when it went away. I was not best pleased when in Sainsbury's my skirt dropped off I had got out of my ♿️ to reach a higher shelf and had not realised I had lost weight the the upside, I had a clean slip on. 👍..

😄😄😄

Does anyone remember the children's programme, 'The Weebles' and their song - 'Weebles wobble but they don't fall down'?Well, I don't fall down 😂.

Nextoneplease profile image
Nextoneplease in reply to 123-go

Glad to hear it 123-go 😂😂

Shiba64 profile image
Shiba64 in reply to 123-go

And I'm glad you don't fall down too 😁

I have always had a waist, even at my highest weights. But since prednisone, all my pounds have blobbed to me middle, and I no longer have the waist.Even my backside has become lumpy😱

On the other hand, I still don't have too many wrinkles on my face...so, I takes them where I gets em..

💜💜💜Jerri

Yes but my shape shifting has come with massive weight gain as well. I now look like an egg with arms and legs and a head stuck on top. 😢😢

Kendrew profile image
Kendrew in reply to PMRNewcomer

We all joke about it and it helps lighten the load a bit but it can still be very upsetting when we see what was probably our more shapely selves transforming into unrecognisable 'shapes'. Things do improve...and reverse.....when on lower doses, and there's much you can do to minimise the weight gain.(See FAQ's)

PMRNewcomer profile image
PMRNewcomer in reply to Kendrew

What I really, really need is for someone to tell me what I can eat to replace bread, potatoes, pasta and rice to fill me up. There is only so much salad I can eat before I start to hop round the kitchen licking my paws (oops hands) and wiping my ears 🤣🤣🤣

😂😂😂

Seriously, though, it’s not easy……x

PMRpro profile image
PMRproAmbassador in reply to PMRNewcomer

Good protein and fat - no low fat products. Lots of above ground veggies - with not too much root veg. They all roast nicely and taste so much better. And very often when you think you are hungry, you are really thirsty, so have a drink before eating something and wait 15 mins, doing something else to take your mind off it. By the time you are done, you will probably have forgotten you thought you were hungry!

Start a meal with a low calorie soup or other low calorie starter. Michael Mosely's recipe books give lots of useful ideas but you will always find ideas using google. I originally started with the 5:2 diet which I found reeducated my mouth and stomach to smaller portion sizes and with having 5 days or "normal" but sensible eating it wasn't hard to get used to. And when it is mouth-feel you want, keep an unpeeled cucumber cut into chunks in the fridge. The crunch of the skin is really satisfying.

PMRNewcomer profile image
PMRNewcomer in reply to PMRpro

Thank you so much, I’ll try it

ailecf profile image
ailecf in reply to PMRNewcomer

I love apple slices with peanut butter dip, or celery with cream cheese, hard boiled egg on tomato slice. I substitute spinach (raw or wilted) for pasta. Lasagna with zucchini instead of noodles. Oh my, getting hungry now!

As long as you’re not hard boiled!

Yes - barrel body now but arms and legs ok - weigh about the same as when PMR started- also fat neck and face - very swollen at one time but only lasted a few days

I was so relieved to read this post as I’ve been so worried about my tummy I’ve even asked my Dr if I can have a scan!! I look like a lollipop on legs!!

It happened to me too when I was taking Pred for PMR. When I reached the low doses (5 mg and under). my body/face shape gradually started to go back to what it had been before and when I stopped taking the medication (after 26 months), it didn't take long before I was back to normal - without my taking any special measures, like dieting.

My shape also has changed. I am down to 4mg, but l am measuring 50” around my midriff.. l haven’t put on any weight as l am careful what l eat. I was a size 18 but now l need to go to a 22/24, it is so difficult to find something to wear., if l get the larger size it is too big around the shoulders, l just look ridiculous but l have to live with it.

So true I don’t even recognise myself anymore and I don’t feel the weight the scales are saying 😩

Yes!! Irritating, isn’t it? I am managing to lose a little weight very slowly, now I am on 2.5 mg. interestingly I lost 2cm off my waist immediately, although only 1.5 pounds in weight. Can’t eat any carbs and lose weight.

Oh everyone, snap! I have been trying so hard to be good food wise and gentle exercise to try and whittle a waist, to no avail! 😕 ... good to hear I’m not alone, I genuinely have days when I feel like I’d rather have a bit of a waist back than be able to move! Reducing at the moment to 2.5mg but really struggling, the thought of maybe being able to loose this barrel shape is all that is keeping me going! Thank goodness it’s Winter here, love a big jumper!! 💕

Yep, in 6 years I've gone from a tubby hourglass to a tubby apple shape. My clothes still fit but just don't look the same way. I have lost some weight but the apple shape has stayed :)

I came across this sketch shortly after starting Prednisolone. I thought it was amusing until I developed a lot of them! I think it sums up what a lot of us are experiencing. I just avoid looking in the mirror these days🤗

.
PMRpro profile image
PMRproAmbassador in reply to Tiggy70

Whereas I have almost none of them!!!

Honestly that could be a sketch of me! Except, bit worse, as have a tiny peanut head, big ish arms still (weirdly!) it’s really not a good look at all! 😂 And that’s it clothes still kind of fit but don’t fit the same way, it is strange!! Agree too about mirrors, who needs mirrors?! Definitely no full length ones here! Lots of love to you all, you are all making me feel bit more normal this morning 💕💕💕

I have lost muscle mass, 2 dress sizes (never wear dresses!), 2 stone in weight and still have a belly! Where is the justice in that? Down to 5mg pred heading to 4 1/2 and got cravings again. Feel like I could eat a house side. The chipmunk face has gone. Of course, older now so chipmunk cheeks replaced by wrinkles. Think we have to accept we don't look as we may wish and avoid mirrors, especially large and full length ones.😊

Ive got an 'apron' for the first time ever.

I'm a hopeless case because I also have diverticulosis, so I simply can't have salads and so much of what would keep me going in a healthy diet. So, I have no choice but to look forward to the day PMR/GCA have gone and I can resume a more active life stile to burn that fat off! It is one more notch up in the unhealthy stress of having these "diseases"!

That is very like me. Had bowel removed 30 years ago so diet is quite limited in that I can't cope with much salad or veg and have to rely on carbohydrates. Low carb diet would be difficult and I've now been told I need to lower my colestrol too or advised to begin taking statins!

LCfan, I am afraid to take statins since it was a statin-induced incident that probably started me on the path to PMR/GCA! Oh, well. As a young man, I really had no expectation of ever getting to old age but here I am, older than many of my friends made it to! I have had so many blessings!

And one of the big ones is this forum!

Bcol profile image
Bcol in reply to LCfan

There are lots of posts/information on the site regarding Statins if you are looking for more information.

Oh my goodness what a response- I wouldn’t wish it on anyone but you all have made me laugh and feel so so much better. Thank you to everyone 😘

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bubble56

Pred does seem to affect people differently…and I think if you were slim built before it comes as a bit of a shock.

I’ve always been statuesque- was a size 18 at 18….and although I did put on weight before diagnosis due to severe pain and immobility and with Pred, my basic shape didn’t alter, but my face and neck certainly changed.

Lost a lot of weight after I finished Pred without doing anything different and despite having dodgy knee and hip which hindered exercise.

Now 5 years after GCA, I’m back to an 18 ….in size…and mind at times.

One day you will be you again, and be able to look in the mirror without flinching…..and I’m sure your family and friends still love you. You are you on the inside, if maybe not on the outside (temporarily)

One day you will be you again, and be able to look in the mirror without flinching…..and I’m sure your family and friends still love you. You are you on the inside, if maybe not on the outside (temporarily)

You brought a lump to my throat and tears to my eyes with this, DL - didn’t realise I felt so sad about it all - but it’s the physical weakness as well as appearance I think x

Bubble56 profile image
Bubble56 in reply to DorsetLady

That’s an optimistic thought and I’m sure it’s true. I do think society puts far too much emphasis on appearance anyway…… it’s what you are like on the inside that is so important. But….. having had an eating disorder in my teens, long before such things were recognised, it stays with you forever if you feel fat. I’m so grateful to be able to walk and cycle again that I’m not complaining , one just has to get on with it! I am also extremely grateful for all the comments and replies, they have made me feel rather more normal. ❤️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bubble56

As I said I always big built & agree that if you don’t confirm to what others perceive to be “normal” you do feel it’s you that is in the wrong.

Maybe because my sister was same as me I didn’t feel that different - but my MIL always had to make some snide remark about my build ..but then she was under 5ft and tiny! So to me she was the abnormal one.

My remark may be optimistic to you, but it true..

please don’t beat yourself up about something that happened a long time ago..you’ve got this far, so you are doing something right.

Take care 🌸

I’ve only been on pred for 7 months and feel like I look horrible. Besides a fat face, my neck looks like I swallowed a squirrel and it got stuck in my throat. I haven’t gained any weight but I only wear sweat pants because my stomach is so distended. I had to cut my thick hair because it looks like straw. I’m happy to be alive so I keep trying to be positive

yes in one year i gained 3 and a half stone, I was also told I did not have PMR and that with my medical history I should never have been put on it. months later I have lost 1 and a ha;f stone of this weight and I do have PMR but I do not want to go back onto predeslone I am taking tramadol and amitriptyline as well as all my other meds, I do have more pain but I feel beter without the bloting and weight gain, my apetitight has also diminnished so next time I see my rhrumatologist in a couple of months Im hoping to have lost more.My face still looks the same but it will take time for my body to have recovered from the steriods, but I am a lot happier.

What have you started Bubble56!! We are with you all the way! Also agree sweat pants are truly the only way to go unless attending something very fancy! 👍💕

Weight gain due to my inability to run 40 - 50 mile a week any more and my inability to relinquish my runner diet of pizza, beer, pretzels, etc., have made me going from looking like an NFL (US pro football league) quarterback to a lineman. The most notable shape change (besides an unsightly gut or what my grandma used to call a German goiter) is my neck. It went from 15.5 inches to 16.5 inches. I had to buy new dress shirts or be strangled by my old ones. I'm glad open collar is more in vogue these days.

Hate my moon face so hardly ever look in a mirror. And now my tum is starting to pop out, but I weigh the same as I did before I started on the preds.

One of my struggles is to ignore all the pies, home baked cakes and cookies made by son and hubby, ice cream, bakery bread, bisquits, rolls, candy of all sorts, chocolates, potatoes, rice, pasta all around the house filling the counters. I've asked them to please stop but they refuse. Both are bean pole thin whereas I no longer am since I, too, can no longer jog or hike long distances, or workout hardly (small bits only). I can at least ride my recline bike but even that messes up the muscles if done too intensely. Ugh. Very annoying as I have no will power of late. I'm looking forward to Lent when I give up ALL sweets and maybe this year I will add giving up bread and all that! Used to weigh 140 pounds, now 170!

Yep…my body shape has changed. Somehow the extra fat/skin has settled in at the back and underneath my armpits!! Bizzare! At night I literally lift up the fat deposits and tuck my cotton comforter under my armpits. It also makes bra fitting properly, an impossibility.

You are in good company!

Bubble56 profile image
Bubble56 in reply to PMRCanada

Same here!!!!😂

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