Moonface! Help!

[Loyd]

Hi all - a quick and simple question. Moonface! I have become a gerbil with a face like a football after massive flair and going up to 30mg pred (now down to 25mg). When first diagnosed March 2019 and on 15mg my face was OK. Can I ask if this has happened to anyone else and if so when does it go away? Will it disappear when I get down below 15mg?

[SnazzyD]

Yes it does go away, don’t worry. I just grew my hair longer. As for when it goes, it does seem to be individual. Mine slowly went without me noticing, though others did see it. I felt real progress was made under 10mg. Even after I thought I was normal at 5mg, later pics show there was still more to go once I got to under 2mg.

[Loyd in reply to SnazzyD]

That gives me hope! So helpful thank you. 👍

[SheffieldJane]

Yes, it has happened to a lot of steroid users. I recently had to go on 40 mgs for newly diagnosed GCA and I puffed up immediately. I know how distressing this feels. It does reduce as your dose goes down and it really helps to cut out carbs, sugar and any processed foods.

30 mgs is a very high dose for PMR, your body must be pretty confused. Racing down to low doses, never works. The drug is reducing inflammation caused by your autoimmune disease but it is doing nothing to cure the disease, it carries on rumbling in the background until it hopefully goes into remission. What you need is a settled period and a gradual dead slow, nearly stop tapering schedule ( outlined on the pinned posts on this website, I think). I would start that from 20 mgs and never reduce by more than 10% of your dose. I would reduce from where you are now in 2 stages of 2.5mgs. Perhaps a week apart if your body lets you. You ought to see the puffiness going as you get down towards 10 mgs, based on my own experience. Help your disease along by pacing your activities and having lots of rest and sleep. Be kind to yourself, this is a significant, unpleasant disease. Some of us are pleased to see the wrinkles smooth out.

We are going to have to live with Coronavirus for the foreseeable future, life must go on and precautions will have to become second nature. There is no evidence that PMR doses of Prednisalone make you more likely to contract it as far as I know. Good luck!

[Loyd in reply to SheffieldJane]

Thank you Jane. Yes once bitten twice shy! I’m going to take this very slowly this time - no more rushing to get off pred. I hope to get to 10mg and stay there for a couple of months before I even think of coming down further. Appreciate the reply.

[PMRpro Ambassador]

No real answer - I don't have moonface at 15mg, just chubby like the rest of me! I did become Cushingoid with methyl pred and gained a lot of weight in the usual places. Once I switched back to pred and cut carbs drastically the PMR and pred fat melted away, first from around my midriff and then face and upper arms. It was slow but it went. But for some people they have to be off pred altogether before it goes - unless they try hard!

[Loyd in reply to PMRpro]

Thanks PMR pro - I’m trying to keep off the carbs so fingers crossed. 🤞🤞

[Cyclegirl54]

It does reduce so don’t panic. At what dose I couldn’t be precise as everyone different.

[Loyd in reply to Cyclegirl54]

You’ve all given me hope! Thanks so much. 👍

[alvertta in reply to Loyd]

There is hope.

[alvertta]

Yes. It comes and it goes. Avoid mirrors. I also have a huge spare tire around my middle. Very distressing.

[Telian in reply to alvertta]

Me too

[alvertta in reply to Telian]

Oh well.

[Loyd in reply to alvertta]

Mirrors being avoided as we speak!! 😆😆

[Viv54 in reply to alvertta]

OH so glad its not just me ! It feels like i have a rubber ring round my wait !!

[AndrewT]

Dear Loyd,

A 'One Word Answer'..... YES! This is, just about, the MOST common 'Side Effect', of Steroids.

Once, your Condition, 'Settles' (goes into remission), then the Pred. will be reduced and your Moon Face, will slowly 'get better'..... I did say 'SLOWLY', it took time to develop it will take time to 'clear'.

Please do, come back to us, in say a year- maybe six months....

AndrewT

[Loyd in reply to AndrewT]

So glad to hear - can’t wait to look like myself again!

[Telian]

Yes it will go as you get lower on pred. We are all different so can’t say when you will lose the weight but you will. I felt much better once got below 10mg.

[Loyd in reply to Telian]

10mg does seem to be the magic figure. My mistake was trying to get below it too quickly. At least I’ve learned that lesson.

[Pisco]

Check YouTube for moon face due to steroids!

[Loyd in reply to Pisco]

Thanks I will. 👍

[Canarylady]

Good morning ladies,how comforting to know I won t be this fat all my life?i ve got huge and hate it.having horrendous side effects with my rheumy putting my pred up to 40mg for 4 wks due to my gca,then will be able to taper back down.i had a ct scan of my brain on Friday and another 2 of my body so awaiting to hear back from my rheumy sometime soon.right eye still doesn’t feel right but it’s been checked out and it’s now fine,so so I m very pleased to say they caught it in time with putting my preds up to 60mg for a couple of wks,so greatful to them up at a and e Worthing,then south lands hospital have just been amazing.do any of you have waterlogged eyes?i do hope loyd like me to start to see an improvement soon with your moon face.

I send you all good thoughts and hugs

[Loyd in reply to Canarylady]

Hope your better soon too. Dreadful disease!

[Daffodilia]

Mine has gone away on 6 mg

[Loyd in reply to Daffodilia]

Encouraging. 👍

[Zozoi]

I went on a salt free diet. Salt has a huge impact on the moon face. Any time I made an exception the following day I would be puffed up. I also made sure I drank a lot of water during the day but decrease the intake after 6pm. Home made celery water, hibiscus tea help with water retention. May be I was lucky but I believe the salt free diet helped a lot.

Like PMRpro, I also went on a low carb, eliminating sugar altogether with gluten.

Hope it all helps

[Loyd in reply to Zozoi]

Sounds like great advice! Thank you so much. Gone are the salted cashews!

[aladymo]

I look in the mirror I don’t recognize the person looking back at me. Who is she ? So I walk right by😱

[Loyd in reply to aladymo]

Be so much better if it turned you into someone glamorous!! 😆😆

[MrsNails]

Have a read of this Loyd 😉

healthunlocked.com/pmrgcauk...

[DesertDeuces]

Me too. I don't recognize myself at times. I also avoid the mirror. But now I've decided to accept myself as I am. So for the first time I'm able to confidently send photos to family and friends and not worry about it. After all, they see how I am anyway, and they accept me. Why shouldn't I accept myself as well while I'm working on reducing the swelling. Hugs to you - and to me! LOL.

[Loyd]

A good attitude! I just hate looking so fat. 😩😩😩