Moon Face

[xechoo]

My relative and friends keep told me i need to start diet and go to the gym, or excersie etc because I have moon face. they think that i get fatter... am exhausted everytime we meet they keep talk about my moon face and my body. Sometimes I do struggle how to face their opinion. I just keep silence and smile. I do really want to argue with them, but i have no energy for that😕😕

[PMRpro]

WIth friends like that - who needs enemies!!! I would avoid them or simply tell them they are being cruel and bullying.

What medication are you on for your lupus? If it is prednisone, a corticosteroid, a common side effect is to make your face appear fatter. This is because it changes the way your body processes carbohydrate and it causes fat deposits in particular places even if you don't gain weight. Cutting carbs makes a big difference for most patients.

[xechoo in reply to PMRpro]

Yes i did. I better go off alone. Even i feel lonely sometimes when i go out alone, but it was better feeling lonely rather than being bullying.

My doctor gave me methylprednisolone, hydroxychloroquine sulfate. Really? I'll try to eat less carbs, thank you! hby? how many times do you take medicine per day?

[PMRpro in reply to xechoo]

I don't have lupus but another autoimmune disorder - I take prednisone and just once per day. That gets the best antiinflammatory effect. I had horrible adverse effects with methylpred and really developed the fat face. But when I was able to switch to prednisone and cut my carbs a lot the fat face faded away. Maybe there is a support group you could find with other young patients - they understand so much better.

[xechoo in reply to PMRpro]

ah i see. Since when you had the disease? so far this forum is work for me. lot of people respons my post. that's mean a lot to me, including you! big thanks mate! xx

[PMRpro in reply to xechoo]

I've had polymyalgia rheumatica for nearly 20 years, and been on prednisone for 15 years, it wasn't diagnosed for a long time. I'm overweight, but I have been overweight most of my life, and now I don't LOOK like the typical steroid patient. I can only remember one person who said to my face I'd gained a lot of weight - and she noticed my fat arms, not my fat face! But I remember how upset I was,

[xechoo]

Exactly. that is how i felt most of the time when they start to mocking my fat face. Am sorry to hear that you through a lot... i hope people start to think how to respect the other... and not judge people easily. I hope you the best.. xx

[Lizard28]

I was on a high dose of pred for almost a year, I had moon face as well, I wasn’t fat at the time, only 8 stones. Someone I worked with told me I had put on a lot of weight. How rude I thought, I immediately defended myself and told her I was on steroids. What gives them the right to comment on your face. I hated having the moon face, when I finally came off my 45mg pred, my face did go back down slowly, just left me with a saggy neck to this day. But I’m well atm so I can put up with that. It’s the one drawback of taking this horrible drug but we have to take it as it also works for us. Keep your chin up, it won’t be forever. Take care

[xechoo in reply to Lizard28]

Sorry to hear that you went through all of it. I gain some energies reading your story. Big thanks! do you still on medication rn?

[Lizard28 in reply to xechoo]

I’m only on hydroxy, I was diagnosed with mctd , possible GCA and now skin lupus has invited himself to my party, touch wood I am well atm. Xx

[xechoo in reply to Lizard28]

Oh My God... take care! xoxo

[Wolfie_at_the_door]

Hey xechoo

While those mentioning your appearance don't sound so kind could they be (badly) trying to nudge you to take advice on your situation? I've had friends and family look surprised at the current me since diagnosis and medication but they haven't openly commented. Yet.

I still took it as a signal to take advice from Dr and Rheumatologist on effects of my condition and the medication. It isn't easy knowing and seeing the changes that can happen and we shouldn't feel it's ok to let others comment without gently explaining that it's because of x or y or z - if saying its a side effect of the meds I have to take doesn't hush them, THEN kick them to the curb 😄 . That's not so easy when family are involved but given sle and other auto immune conditions are not always visible a lot of folk need a little 'educating'. Boring to do but it helps. I hope you find a way to work through it, doing this alone is tricky enough so maintaining a support network - not just on here is a good thing.

[xechoo in reply to Wolfie_at_the_door]

Hey Wolfie!

Yes maybe they didn't meant to... we have no idea what is their pov. Yes you are right about folks need a lil education about this disesease. sometimes am too tired to explain my people around me about the disease, they really have no idea what it is and when i explain it to them, i lost my energy😭😭😭. Tbh am struggling with it, thats why i prefer to keep silent and smile while they keep commenting on me😕

[Bowenlady]

Hi, I too have the really round face! I am on Prednisolone and have been for around 4-5 years. I was on 10mg daily which seems to be quite a low dose but I am resistant to coming off them and usually flare up when they are reduced by even 1 mg. My feet and legs swell up with water and I have infections in my legs. I went into hospital recently after a fall and they increased them to 20mg then reduced them to 15 then 10mg. I am slowly reducing them with the help of my rheumatologist after advice given here on how to reduce. I have an idea how miserable you must be feeling after your friends and family have been so unkind. I have experienced people walking past me in the shopping centre because they do not recognise me! So speak to your doctor about how you are feeling. The idea of reducing carbs sounds a good one and I am going to try it myself. This forum is a great source of advice, even if the advice only leads you to speaking to your doctor about your concerns, it helps a lot and puts some control back in your hands. There are lots of articles on the internet about the effects on the body of Prednisolone and Hydroxychloroquine. I have shown them to people who thought I was “making excuses” for over eating. It has helped a bit. It’s encouraging to hear others have managed to reduce the size of their “moon face” so don’t give up on getting help. Thank you for sharing with us, it’s prompted me to try to cut carbs.

[xechoo in reply to Bowenlady]

Wow what an excellent way, you dont have to lost ur energy for explain your situation to them. But few of them still so annoying you know. Yes! this forum absolutely works for me. I gain some energies from the member's story about how they strugglw with the disease and etc. Recently, I learn how to ask for a help to my surrounding, tbh it was so hard for me to ask for a help. But, i realize that am just a human being. So, ask for a help is necessary! Big thanks for your sharing. Btw i wonder, how many times did u take you medicine per day?

[Bowenlady in reply to xechoo]

Hi, I take all the Prednisolone in the morning after breakfast. I also take 200mg Hydroxychloroquine, 300mg Gabapentin, a blood pressure tablet, calcium tablets, a water tablet. Then at lunch time I have another 300mg of Gabapentin. Then after my evening meal,I have 1 more 300mg of Gabapentin and another 200mg of Hydroxychloroquine. It’s a lot of medication I think but others take much more. X

[xechoo in reply to Bowenlady]

wow, Thats a lot! thank you for your welcome respons. Hope we will get better every day!!! xx

[Wytchylady]

Sadly people are judgemental because as much as anything they don't understand. They shouldn't be making personal comments anyway. Now if someone makes a personal commitment about my appearance/weight I'll tell them it's the medication/condition and ask them to read up on it so they better understand next time.

Moon face isn't something we asked for, weight gain, changes in appearance is beyond our control. X

[xechoo in reply to Wytchylady]

Yes absolutely! Take care!! xx

[Wytchylady]

I meant to ask if you'd been put on Prednisolone? Moon face is something that happens because with steroids. It can also lead to weight gain. X

[Hamptons]

have you said - would you like to come with me as you could do with losing pounds too. How rude! Why do People think that it is ok to speak to someone like that. Be clear it’s a side effect of medication and explain that exercise won’t change the moon face but it may kill you.

People are ignorant and sadly maybe be well intentioned but these things hurt.

[joanneM200]

oh Sweetheart!

I’m sorry you’ve got such sh***y friends x

Steroids are known to cause ‘moon face’ and weight gain

Just be kind to yourself, eat healthy and get a bit of fresh air every day, if you can. I know it’s not always easy so don’t beat yourself up if you can’t. And I really hope you have some positive people in your life. Xx

[xechoo]

Hi there!

Yes, since i have limited energy everyday, i usually get fresh air just on weekend. It helps sometimes. I hope so... Big thanks tho!

Take care.. xoxo

[Hoofprints]

Hello beautiful human being! Don't let those ignorant idiots get you down. We live in a society obsessed with the way things look and we all fall prey to the downside of that conditioning at some point or other.

Who you are and how you feel is far more important - try and see the moon face as a temporary trade -off for better health.

You have had lots of good advice here from people who understand what it is to live with a chronic condition and to deal with the unwanted side effects of medication. So you are not alone here and can check in to offset those feelings of isolation you feel when in the company of those who simply don't have any experience or understanding of what you are dealing with.

And next time someone starts criticising your appearance, well-intentioned or not, try taking a closer look at them. Are they perfect? I bet not. I bet they have aspects of their own appearance they absolutely hate.

Nevermind the idea of you losing weight - they need to lose the attitude!! Feel free to tell them so if they persist as they are not holding back in sharing their views.

Here's wishing you better health and kinder friends and family who value who you are 🤞🏻🍀🤗

[xechoo in reply to Hoofprints]

hi there! what a wondrous advice🥺🥺 reading such an advice make feel am not alone anymore. This probably works for me. Glad i found this forum... I got back my confidence😎😎

Big thanks mate!!! take care xoxo

[Hoofprints in reply to xechoo]

👍👍

[Tessie62]

xechoo,

You may want to address your thyroid with your Rheumy. You mentioned feeling exhausted. Personally, with Lupus and Sjogren's that's enough for me to feel tired. But when I'm feeling exceptionally tired I have my thyroid checked. Sure enough, that's what it is almost every time. I run Hypo mostly but will run Hyper occasionally. Good luck. I hope you feel well soon.

[xechoo in reply to Tessie62]

hi! yes i do checked my thyroid, and the results show its normal tho... Big thanks mate!

[lupime]

As well as the excellent and supportive advice you have had here, have you looked on the lupus uk website? It has a helpful section on talking to family and friends with some useful videos to watch lupusuk.org.uk/family-and-f... You will also find some useful leaflets in the living with lupus sectisectionsectisectionsection that you could give to people about Lupus.

[xechoo in reply to lupime]

what an advice... i appreciate it

big thanks mate!