I'm just curious...anyone who has been on a high enough dose of Prednisone to achieve our well known moon face, have you also found it makes your lower neck area puffy, too? I feel like I'm turning into a football player! Before Prednisone, I used to have a thin, small face and neck area. Now, eight months later, I barely recognize myself in photos. Ugh. Thanks for your responses ahead of time.
The neck puffiness is called a buffalo hump, a side effect of pred. It seems that pred has the effect of getting our fat to move to places we don't want it!
Yep the moon face is horrible I too dont recognise myself in photos and being large around the tummy area is real uncomfortable some days I don't want to go out cause the way people look at me. Then there's the sweating when you're out and looks like you just jumped out of the shower.
I had full blown moon face, so much so my mouth was barely a little line between my puffed out cheeks. Don't remember the neck but did have puffy areas. I remember reading somewhere once that someone wrote she looked like a Zebra. I didn't know what she meant until I started discovering long fatty deposits on my body. Keep the faith...it all goes away eventually. If I recall, moon face started getting better soon after a big drop in dosage.
I am on 8mg medrol (=10mg prednisone) for last 6 wks. (Down from 6wks on 9mg.) Have what I call chipmunk cheeks, which is probably what is also called moon face. Fat deposit also within what is ordinarily the cuppy part of the collarbone. And, as you describe, a lot of sweating with exertion. Add the red and purple blotches on most of the visible skin and it presents a beautiful picture.
This last flare of my GCA started in May 2015. It was so bad my rumy moved me up to 80 mg pred from the 60 I usually start with. This is my 4th flare. I started GCA 7 years ago. I'm down to 4 mg now but I also take Actemra and .8MTX. My face has been a balloon with my round cheeks causing terrible wrinkles in my upper lip. I also have a buffalo hump and a weird lump of fat or fluid on each side of my neck extending to my bra strap. My abdomen and breasts are huge. I've gone from a 36C bra to a 42DD. I put on 50 lbs this flare added to the 10 lbs left over from the last flare. I've taken off 18 lbs so far. I have serious spine problems and this weight isn't helping that either. I was active and athletic but now I'm weak and tired all the time. I can't get much exercise because of pain and being out of breath as soon as I walk a little. My depression with all of this isn't helping either. I just want to sleep.
Yes and yes.
Quite a lot of people on another forum (different site) will tell you they avoided or reduced the moonface effect and weight gain by cutting carbs drastically. I went on a low carb diet while still at 15mg and lost weight from the start - the first area of pred fat to go was that round my midriff but the face thinned down as well after a while. I lost 36 lbs altogether.
Other ladies on the same site but a different forum, also on pred, have lost a lot of weight with Slimming World. It can be done although only you can find which way suits you best.
I started on 40 mgs of prednisone and eventually weaned off after 10 months. I started gaining weight and some puffiness in the face when I started lowering my dose. My cholesterol shot way up due to the prednisone. I followed my doctor's orders on tapering after every sed rate test of my blood. I have since taken all the weight off. I quit drinking alcohol during my medication period an d tried to limit salt intake too. Once nice thing last winter I never suffered from my Raynaud's syndrome.
I have a terribly fat neck and huge buffalo hump - but not so much the moon face - I'm grateful for that small mercy!
And let's not talk about the size of my stomach these days! UGH.
However, I've recently been able to reduce to 5mg and my daughter said yesterday that I look less bloated - I'm encouraged!
Buffalo hump? Omg! I feel like a buffalo!
Sweating and hot flashes! Yes! They are horrible!
Ah, so many red spots on my legs, and now beginning on my arms. It's embarrassing. My dermatologist said they should go away after stopping the Prednisone, but I'll believe it when I see it. Anyone?
i totally understand. I too used to be very active. Now I feel like all my muscles are deteriorating by the day. And what's with the bigger boobs? I had to buy a bra extender! Have to laugh so I don't cry. I was very out of breath also at higher doses, but not so much now.
Me too Pam - big boobs and skinny muscles! AGH!
They may well go away at lower doses, not needing to be off pred altogether. I had small red blotches for a while, but haven't had any for a long time. Some people say that using good skin creams helps.
Yes, got the moonface and the enormous stomach and boobs. I've been on high doses of pred over the last two years and am finally down to 15mg for the first time.
I've put on a third of my original weight, which was reasonably slim.
I got tired of paying for larger bra's which were uncomfortable anyway, so croptop bras from a supermarket chain is what I use these days. One day I hope to buy nice lingerie again!
I no longer allow cameras anywhere near me!
Some people pay good money for big boobs!!
I know - never been able to work out why!
Hi Pam, I do hope the red blotches do go away when I stop pred. I am on 5mg and still get them regularly. Some are really quite big. I seem to be having a lot of them at the moment for some reason. They do not seem to break open so often now though, thank goodness.
That's true!