Moon face , double chin and all that

[Mstiles]

Is there a point when you taper down where the swollen face and neck goes away? Around my eyes too... sometimes hard to draw or read.

I’ve been on 40 mg for 2 months now, and it seems like I’m blowing up even more every day.

Supposed to start reducing to 30, (might do 35 instead), next week.

Thanks everyone.

[SnazzyD]

My moon face didn’t start to shift until 15 and below. However, I found salt intake makes a huge difference to both my cheeks, puffy eyes and fluid retention in my torso and legs. It takes a few days to clear but at first a weeks or so. Therefore, when I eat food I have no added salt and no salt from processing such as in gravy, coatings etc. If I have had salt in my food, it can start to show within half a day and puffy eyes is the first visible sign. This isn’t a cure because some is the fat redistribution from Pred, but fat doesn’t tend to go in a day or two!

[Mstiles in reply to SnazzyD]

Thanks Snazzy D.

Yes I’ve noticed that. Seems like I have been probably using more salt because the pred seems to make food taste so bland. Have you found any spices or replacements for salt that help? Less salty food is hard for a bacon lover!

[PMRpro Ambassador in reply to Mstiles]

I find various herbs and lemon juice will make up for a lot. And of course turmeric and garlic might serve two purposes - being antiinflammatory.

[Mstiles in reply to PMRpro]

Yes garlic and lemon juice are favorites. I’ve been making a turmeric tea with ginger some days too, for an afternoon break, seems to help calm me down enough to rest.

[SnazzyD in reply to Mstiles]

Same as the other respondents plus turmeric, cumin, paprika, sumac, curry blends etc. When I fry onions is do them long and slow so they nearly caramelise which gives food a richer taste. I buy low salt stock cubes for occasional use. I make my own dressing for salads with olive oil and any sort of vinegar. Again, like sugar, once you’ve stopped using it or having it in processed foods, anything salty is too much. I couldn’t bear to eat a packet of crisps/chips now.

[Mstiles in reply to SnazzyD]

I used to be a chip addict! I’m surely motivated to eat better now!

[Hidden]

I hear ya sista!

[Bj2016 in reply to Hidden]

I don't have a picture of myself on my profile, mainly because I don't look like me any more. I try to avoid looking in the mirror because it's depressing.

But I have been thinking for some time that the default profile pic looks rather like me. Round face, jowls, eyes like currants stuck in a bun, small mouth because my cheeks seem to be squashing it......

Do you think "they" chose that picture for that reason?

[Hidden in reply to Bj2016]

Hehehehehehehe. Good spot... Yes, it looks like me too!

[Mstiles in reply to Bj2016]

Ha ha! Great description! Did my eyes shrink overnite?

[Daisychain12 in reply to Bj2016]

Love currant buns xxx

[Hollyseden]

Interested to see you also mention neck. My moonface is not quite as moony as it was since tapering down pred but my neck still feels puffy. When I'm looking down at a book or my phone, I feel as if I have a wee cushion keeping my chins ( yes chins plural🙄) company. Hope they will go soon. Must do better with less carbs and less salt.

[Janann25 in reply to Hollyseden]

Oh how I identify with that! I'm now down to 18mg - after several months between 40 and 35mg - and my face is SLOWLY going down (I'm starting to get wrinkles back!) but not my neck. Your CUSHIONS comment is spot on. I still get a nasty shock if I catch sight of myself in a mirror 😉

Jan

[Hollyseden in reply to Janann25]

Yes there is a weird wee lady with lots of chins who sneaks up behind me and looks in the mirror when I do 😉

[DianeA1 in reply to Hollyseden]

LOL!!

[Mstiles in reply to Hollyseden]

Ha ha ha! She’s the spirit of prednisone?

[Mstiles in reply to Janann25]

That’s encouraging Janann25. How did your taper from 40 to 18 go?

[Janann25 in reply to Mstiles]

Very slowly!! Unfortunately, the man reason for the slow reduction was because I was having continuing symptoms of GCA, which went on for 7 months. I only had appointments with the rheumatologist at 6 monthly intervals so I wasn't well supervised and it wasn't until I asked for a referral to a more specialised rheumatologist that I learned that my "symptoms " were in fact the "side effects" of the high steroid dose and I didn't have GCA. I wasn't a happy bunny 😡 Anyway, I eventually started to reduce at the beginning of December 2017 after being on 30 or 40mg Pred since July 2017. So, my next reduction next week will hopefully be to 17mg but I'll make sure I'm coping ok before I continue with the reduction.

Jan

[Mstiles in reply to Hollyseden]

I’ve learned to never put a mirror under my chin, especially now. 😀

[Daisychain12 in reply to Hollyseden]

Me too. Neck like a bi fold door! Xx

[Hollyseden in reply to Daisychain12]

Only a bi fold! 😆 I am the not too proud owner of a concertina under my chins. Fed up blaming pred. Today I'm blaming cake 🎂🍰🍮😉

Laugh or cry? today I choose to laugh.

[DorsetLady PMRGCAuk volunteer]

Hi Mstiles,

Can’t remember when exactly things began to return to normal, but think it was probably single figures (sorry - but “we’re all different”!). But I well remember the neck, there were necklaces I just couldn’t wear - can now though.

It will go😊

[Hollyseden in reply to DorsetLady]

That's interesting re necklaces. I've stopped wearing them because they feel 'tight' and uncomfortable.

[Mstiles in reply to DorsetLady]

Thanks Dorset Lady for the encouragement.

[PMRpro Ambassador]

I lost mine while still on between 10 and 15mg/day prednisone - I had been up to 20mg of Medrol and that was when I put on the weight and went "Cushings". But I lost the 35lbs by cutting carbs drastically. It was slow weight loss but the first place it went from was around my middle and then from my face. Like Snazzy I avoid salt when cooking entirely, nor do I add salt at the table - I can see the difference when we are on holiday when everything is cooked with salt!!!

I have a watch where the bracelet is now fastening a good half inch smaller than before.

[Mstiles in reply to PMRpro]

Maybe this will encourage me to get out of a cooking rut and try new seasonings. I am a salt lover!

[PMRpro Ambassador in reply to Mstiles]

You really only need about 6 weeks of disciplined abstinence - by then all your taste buds will have changed and food will seem much saltier if there is any in it.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes I've found watch and rings are loose - good excuse to buy new ones to keep the older ones on! Rings, that is....well I'm sticking to that!

[Janicep]

I went to go out for a meal last night and my nice summer dress was much too tight. Gosh that was a reality check and none of my necklaces fitted. When I look in the mirror I wonder who is looking back until I think “oh yes that’s me with the round face and fat neck”. I have put on 10kg since last April - 1st a 4 month holiday overseas eating lots of yummy things 🍷🎂, then prednisone 20mgs following diagnosis on 27/11/17, then Christmas 🎄and now down to 16mgs. 👍

[Mstiles in reply to Janicep]

Between Graves’ disease and PMR/GCA, I lost 24 lbs from last summer until diagnosis. I wasn’t overweight and didn’t need to lose.

Since pred i’ve gained 3 lbs or so, seems like all in my face so far!

[DorsetLady PMRGCAuk volunteer in reply to Mstiles]

Yup...that sounds about right!

[Janicep]

Yes I must try and cut carbs and salt - I’ve done 2 hours in the garden today and not too sore

[Daisychain12 in reply to Janicep]

How are you doing now Janice??? Xxxx