[Needananswer]

Hi All -

After a lukewarm response to Mestinon my dr put me on 5 months of high dose steroids. It was amazing and brutal all wrapped into one. My eyes worked brilliantly, my speech was perfect and, of course, I had boundless energy.

On the flip side, I had multiple staph infections, raging thrush in my throat and mouth and a truly outrageous moon face.

Thankfully, I successfully tapered off in July (a brutal process) but my face is STILL enormous. With all of the other difficulties MG presents I can't believe I care so much about my face but as a young woman I do.

Has anyone seen moon face not reverse? It has been 3 months without ANY steroids and it is still very big. I am really thin so the juxtaposition makes it worse.

I'm losing hope. I would love any feedback specifically related to moonface and if it took u a long time to reverse.

Thanks so much in advance.

[SoftTalker]

Originally Posted by Needananswer

Hi All -

After a lukewarm response to Mestinon my dr put me on 5 months of high dose steroids. It was amazing and brutal all wrapped into one. My eyes worked brilliantly, my speech was perfect and, of course, I had boundless energy.

On the flip side, I had multiple staph infections, raging thrush in my throat and mouth and a truly outrageous moon face.

Thankfully, I successfully tapered off in July (a brutal process) but my face is STILL enormous. With all of the other difficulties MG presents I can't believe I care so much about my face but as a young woman I do.

Has anyone seen moon face not reverse? It has been 3 months without ANY steroids and it is still very big. I am really thin so the juxtaposition makes it worse.

I'm losing hope. I would love any feedback specifically related to moonface and if it took u a long time to reverse.

Thanks so much in advance.

Yep, the moon face does get better, I just can't remember how long it took.

I was on a rather high dose 60 mg per day for a long time. Moon face, hump in top of back developed.

After reducing the dosage slowly, I did lose some of the weight I gained, and slowly the moon face appearance disappeared.

It was like - hmmm...............
One day I had this rounder than normal "moon face"
(My face shape is normally round)

And then SUDDENLY, one day it was gone. Friends who don't see me daily noticed and finally, so did I.

Note:
I have not been able to get off of prednisone completely - I have weaned down to 10 mg a day and now taking 10/20 EOD dosage, because of recent exacerbation.

So far, at this dose the moon face has stayed away.

Knock on wood.............

Good luck. Hang in there. Don't give up hope.

It is difficult to accept the change(s) in our appearance with MG.

But I finally accepted most of them - when I considered the alternative(s)......

[Southern Bell]

I also started taking 60 mg prednisone daily because of eye issues. It seemed that all of a sudden my face was every puffy or as my internist called it "chipmonk face". It took a little more than two years to reduce the dosage mainly because my initial neuro really didn't have an interest in my situation since his main focus is ALS so I changed neuros after two years and the new neuro quickly decreased the dosage to 5 mg EOD which is my "maintenance level".

All of a sudden I noticed that my face was looking more normal. Prednisone is a "bad" drug on your body. I wish I had never had to take it.

Hopefully with time you will notice the reduced puffy look of your face too. Good luck.

Southern Bell

[Needananswer]

Thank u both for your feedback.

Agreed - prednisone and dexamthasone are horrible, horrible meds. I def wish they hadn't raised my dose so high for so long.

I also initially saw a dr who primarily treated ALS and he was pretty useless.

Still hoping my face deswells. Wouldn't mind as much if the benefit of the steroids was more lasting. Grrrr.

Hope you are both feeling well.