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Why would my 'moon face' get worse while I'm tapering Prednisone?

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Posted 4/2/2013 1:35 AM (GMT 0)
I'm doing a really slow taper of Prednisone - I am tapering by 2.5mg and

I stay at each dose for 2 weeks (or so depending on how I feel and how my BMs are). I also do an every other along with it - so right now I'm at 10mg but Wednesday I will taper to 7.5mg, then do every other (10mg/7.5mg) on alternate days for 2 weeks before completely going down to 7.5mg. It seems to be working so far.

But for some reason my 'moon face' seems to be getting worse.  Over the weekend I saw a cousin I hadn't seen in over a year and she mentioned how nice and filled out my face was.  I know she was trying to be nice and has no idea why my face is like that, but it made me feel horrible!  My therapist said a similar thing to me last week, that my face looked 'puffier' that day.  Why do people have to say things like that?  Now it makes me notice it more when I look in the mirror myself and I had thought maybe the water weight was starting to go away. I had even lost the bloating/extra little weight around my waist a week ago but it seemed to come back over the weekend as well.

Is it common to still retain more water even while tapering Prednisone? It seems odd that its getting worse as I taper, I would have thought it would get better. I've never been in Prednisone this long or tapered this slowly before so not sure what to expect.

Posted 4/2/2013 5:29 AM (GMT 0)
I also got a worse moon face as I tapered prednisone. I tapered at 2.5 mg every week. I barely noticed the moon face while on the full dose of pred but more when I tapered. I attributed the moon face getting worse to just having been on prednisone a long time by the time I tapered? I don't know if thats exactly why...
I'm naturally pretty thin and I had a friends mom who hadn't seen me in awhile ask me if I had gotten my wisdom teeth removed because my face looked so puffy. It was awful! I was mortified. And in pictures I could def see the puffiness in my face the best.
I hate the moon face, bloating, and water weight. Only good thing is that it finally went away after a month off of pred.
Posted 4/2/2013 6:00 AM (GMT 0)
Moonface cropped up for me at 20 mg Pred daily, about 6 weeks after I started the course at 40 mg daily. As I recall it didn't start to improve 'til I lowered to 10 cm daily and stayed on that for probably 10 days. So I looked noticeably weird for at least 3 weeks, and then my swelling gradually subsided. Colon-wise my biggest hurdle was tapering from 5 mg daily to 2.5 and off. I needed about 3-5 additional 2.5 mg doses as "bandaids" before my colon behaved on mesalamine alone. By that time, though, I did lose the moonface, TG. It seems to vary among UCers-- some have a harder and longer time getting rid of it. I tried to be careful about salt intake while on Pred to lower fluid retention. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/2/2013 2:52 PM (GMT 0)
Once you're off it, or at a much lower dosage, it'll subside.

Are you using steroid rectals as well?

q
Posted 4/2/2013 3:22 PM (GMT 0)
No steroid enemas, just mesalamine.

I'm at such a low dose now (10mg), I was hoping it would start to go away. The drop from 12.5 to 10 was horrible for me but all the other side effects from that taper seem to have gone away now. Other than the increasing moon face which just seems odd.

Posted 4/2/2013 7:20 PM (GMT 0)
My moon face worsened while I tapered as well. And then, once I was off... .my hair started to fall out like crazy. It lasted a few months. It has started to grow back (its been 6 months since my last dose) and when I blow my hair dry, I have a helmet of short hairs sticking up. Awesome.

I was told that it is not water retention but actually fat... which is why it feels so incredibly heavy.

And for me... it made me feel better when people 'brought it up' rather than saying they couldn't tell... either way, it is no fun at all. Hopefully your taper goes well and your moon face will be long gone before you know it.
Posted 4/2/2013 7:54 PM (GMT 0)
Oh man, I hope it isn't fat!  I don't think it all is as it went away on my stomach pretty quickly although I don't tend to hold fat in my stomach so hard to tell I guess. 

As far as the hair loss, mine falls out too when I taper. It usually starts when I get below 12.5mg, and it was falling out like crazy a few weeks ago. But then it magically stopped whichI haven't seen happen during the taper before. I'm hoping this super slow taper is helping slow the hair loss. My dermatologist was hopefull that was the case as well. For me, its my scalp that gets very red and irritated and then the hair falls out. I definitely had this a few weeks ago but its back to normal now. I hope when I get below 7.5mg it doesn't pick up again.

Posted 4/2/2013 10:06 PM (GMT 0)
You can also cut back on moon face and hasten its departure by cutting out added salt, or cutting it to the bare minimum. I love a dash if salt on my dinner but during the medium to higher doses of pred I'd cut way back and noticed it helps with the moon face minimization.
Posted 4/2/2013 10:39 PM (GMT 0)
maybe you could try some big hair - might help make the moon face disappear -
Posted 4/3/2013 1:11 AM (GMT 0)
Mine didn't start to decrease till I was completely off of it. Not the answer you want for sure. Moon face is the worst.
Posted 4/3/2013 2:24 AM (GMT 0)
I've been Pred free since Jan 30 and just this past week I have had a weight loss. My face is getting back to normal although I see it has a bit to go still.
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