*sigh*.. Moonface/Quasimodo

[carriej22]

Hi Folks,

Me whining once again. I think every damn branch on the wegs tree has hit me on the way down!

I knew the moon face was developing... But it seems to be getting WORSE. I am now down to 45mg prednisone daily (vs the 100 on discharge in June) and my doctors are telling me my face should be going down, but it isn't.

I have also developed a beautiful quasimodo HUMP on the back of my neck which is legit causing me physical pain. It's like I'm aware of it and messing with my posture. I feel like a MUTANT...

My face is outrageous. So much so, that my BFF who was here yesterday (who seen me like two weeks ago and confirmed the moonface "wasn't so bad") was mortified for me. She was shocked by it. I didn't feel so bad about it until I seen her blatant negative (and pitiful, she feels bad for me) reaction. Then I'm thinking "wow.. this must be bad". I have been avoiding mirrors.

I work in the beauty industry. This is not good. I cannot look like the hunchback of notre dame's bride. I want it to go .. now.. I have dimples on my face it's so bad... I do not normally have dimples! It's really bad from the side. It's also swallowing my eyes.. lol

How long does this take to go away? Like I said, Drs said it should be disappearing.. Seems to be getting worse, regardless of my smoothie and raw vegetable diet now that I'm not wanting to eat everything in sight.

AHHHHHHHHHHHHHHHHHH!!

[Debbie C]

Sorry to say Carrie..it seems to go on forever.I've been done to 5mg of pred for about 3 weeks and u can't really tell much anymore. The problem I'm having is the inside of my mouth ( Cheeks ) are all puffy. I mentioned it to the dr. when I had to go to the e.r. a few weeks ago and he said I had TMJ and go see a dentist and he prescribed me antibiatics and Mobic. Well I knew it wasn't TMJ and threw the scripts away but went to the dentist anyway and he just confirmed what I thought...it's from the preds and it could last a couple of years !!!!

[drz]

Hi Folks,

Me whining once again. I think every damn branch on the wegs tree has hit me on the way down!

I knew the moon face was developing... But it seems to be getting WORSE. I am now down to 45mg prednisone daily (vs the 100 on discharge in June) and my doctors are telling me my face should be going down, but it isn't.

I have also developed a beautiful quasimodo HUMP on the back of my neck which is legit causing me physical pain. It's like I'm aware of it and messing with my posture. I feel like a MUTANT...

My face is outrageous. So much so, that my BFF who was here yesterday (who seen me like two weeks ago and confirmed the moonface "wasn't so bad") was mortified for me. She was shocked by it. I didn't feel so bad about it until I seen her blatant negative (and pitiful, she feels bad for me) reaction. Then I'm thinking "wow.. this must be bad". I have been avoiding mirrors.

I work in the beauty industry. This is not good. I cannot look like the hunchback of notre dame's bride. I want it to go .. now.. I have dimples on my face it's so bad... I do not normally have dimples! It's really bad from the side. It's also swallowing my eyes.. lol

How long does this take to go away? Like I said, Drs said it should be disappearing.. Seems to be getting worse, regardless of my smoothie and raw vegetable diet now that I'm not wanting to eat everything in sight.

AHHHHHHHHHHHHHHHHHH!!

The buffalo hump is a common side effect of pred that most of us have had I think. It does go away at lower dosages just as the moon face or puffy face decreases too, but it can take awhile. You might need to get down under 20 to notice any big improvement. Remember though that too fast a taper can be dangerous to your health so try to be patient.

[mishb]

I've been on 5mg for about 8 months now and the moonface, hump and belly - are all still there.

I had my drivers licence renewed in May and I never really knew how bad the moonface and chipmunk cheeks were until I saw the new photo on my licence.

Anyway, nearly three weeks ago I started another med called plaquenil (400mg) and my mum said the other day that my face looked thinner.......maybe the plaquenil is reversing the pred effect. I haven't noticed it yet but if others can, then it's a start.

[malin]

I used to have a very bad moon face too, I remember having to go get my first ever photo id done, it was not fun being a 16/17 year old having to go get my first ever photo id taken with a massively swollen face. I still have to photo thou, just to remind me sometimes of what I have already been through when things are bad now.

My face used to get all shiny and spotty as well, due to my hair and skin becoming extra greasy while on pred, and then my face would itch like crazy because it was strecthing so much I suppose...

BUT it does get better! And remember it's all for the best in the long run, this medicin is part of saving your life, a temporarily swollen face is worth it.

[Sangye]

Like the others have said so well, it is temporary, Carrie. However, the doses that your doctor has had you on for so long do make it last longer. That is probably why your swelling is getting worse even though you're tapering. Like I explained in a prior thread, the side effects of pred don't go away when you stop the drug the way it works for most drugs. Pred upsets a LOT of apple carts in the body.

Controlling salt intake goes a long way. Mostly you just have to wait. I'm sorry, it's miserable. Almost all of us here have gone through it and we know how it feels.

[KathyB]

Oh boy, can I relate! My dx was just 5 weeks before my oldest son got married. I was on 90 mg of prednisone and the "fat" occurred within just a couple of weeks. Of course, the wedding photos were "ruined" (in my opinion) and they are saved for all eternity. BUT ... I was alive and actively participated in the wedding. My son/family said my changed features (including the hump back!) were much better than the alternative of me not being around at all! So now almost one year in and still at 5 mg/day, I can tell you most people say I look pretty much back to normal. I still feel a bit thick, but everyone's comments are right -- time and a lower dose will help relieve the side effect! Hang in there!!

KB:cool:

[vdub]

There are two things that are really crumby about this disease. The first is the part that you are going through right now where people can look at you and know you are sick.

The second is when you look great, but are really sick and all you hear, all the time, is how great you look. And while they're saying that, your joints and muscules are killing you, your sinuses are running, etc, etc.

It's a tough disease and after two years I've learned to just ignore what other's think or say. I actually had a sister-in-law going around telling people that my disease wasn't a big deal. Gee, I thought it was a big deal and so did my doctors. People like that come and go and you just kind of have to roll with it. I must admit, though, that gaining the steroid weight was the worst thing for me to deal with.... Life will get better....

[carriej22]

Just seems like so much to deal with. It is nice to be able to find support here though, no one else really understands. I'm not bleeding to death or anything so people assume I feel great. Some days I can hardly convince myself to get the heck out of bed!

Im only 8 weeks in to knowing what this is... So it's still all so new. It doesn't take much to get me going these days.

But thank you everyone for the kind words... I really hope mine goes away. I ended up cutting my hair off yesterday to try and make myself feel better - since I had some thinning and breakage from what I am assuming is the methotrexate. Not sure if it worked yet or not LOL

[freakyschizogirl]

Hi Carrie

I was luckier than most when i got diagnosed as i had a friend who was diagnosed with a rare disease as well. We kinda talk each other through things, my mum has Rheumatoid Arthrits too so we are on some of the same drugs.

Even with these people around it can seem like a dark and scary road.

Anytime you need to vent or ask a question everyone here has great advice and can usually point you in the right direction.

Hang on in there, you are doing great.

[carriej22]

I look at my pictures - even the pictures from my wedding which was just a little over a month ago and I can't believe I was self conscious then.. OMG... between the extra facial hair (not even kidding, atleast I can get rid of that) and all this extra weight (mostly on face and neck, but belly is getting there too) I feel horrible. Like I physically feel.. narsty. I also think somethings up with my throat too as I've got a squeek in my voice and I choked a few times on water.. Awesome.

My friends are all healthy party animals living summer up right now so that's probably part of the reason I'm so bummed. They all try to make it around - but really I'm not much fun right now so I can't blame them.

It doesn't help either that people keep bringing me food.. It's like, seriously? I am trying to avoid this! LOL.. But people don't know what to do.. So they keep bringing me treats to make me feel better. I told them to start bringing me salads!

[annekat]

The salads are a great idea! I wish people would bring me some, because I keep buying salad ingredients and then have a hard time actually getting around to making a salad. But they can be a meal in themselves, with chunks of chicken, nuts, fruits, and lower fat cheese like grated Parmesan. For vegetarians, chunks of firm tofu sauteed in olive oil and seasonings. Throw in a few croutons, too.

I know I had the moon face pretty bad about a year ago when I was at around 30-40 mg. pred. It definitely improved when I got down around 20mg. Now, at 10mg., I think my face is a little round from putting on a few pounds but people tell me it's not the same as the moon face. I also have a bit of a buffalo hump that was noticed prior to dx and pred because I have osteopenia. I don't know how much worse the pred made it, or how bad it is now, but no one mentions it. Things will get better!

[chrisTIn@]

Hi Carrie. I can relate to your problems even though I'm not on pred. Must be hard for you, to see these physical changes, especially since you work in the beauty-industry, and looking good is part of the repesentational side of your profession. As others already stated, this medication is needed to save your life, and things will get better in the future... So that's something to hold on to.
Since the Wegs-diagnose, I also find it harder to look my best. All the things a woman does (if she likes it, and I did) to look good, such as going to the gym and exersize, using face-masks, lotions, body-milks and so on, take a lot of time and energy. Sometimes I don't have that energy, or my arms and legs hurt, so I can't exersize and feel pretty lousy. It takes time to adjust to the new life you get after the diagnose. Some people here call it the 'new normal'.
I sure hope you will be feeling better soon, and you will find a way to deal with all the changes.
Take care! :smile1:

[MCC]

The moon face is hard to deal with. I dont know anyone that didnt get it...I found it started to go at about 10mg. How are you feeling now?