Cushing's Syndrome Support Group

Cushing's syndrome is an endocrine disorder caused by excessive levels of the endogenous corticosteroid hormone cortisol. Symptoms include rapid weight gain, atrophy of the skin (which gets thin and bruises easily) and others. Patients frequently suffer various psychological disturbances as well. Join the community to get support and find others who know what you're going...

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AusSue 04/26/2009

My neurologist told me last time I was in hospital for ms that I have cushings syndrome from too much steroids - no more steroids no matter how bad i am.
I have the moon face - still very obvious even though I havent had steroids since last September.
I have also gained a lot of weight & no matter what I do I cant lose it, not even any of it.
Just below my knees is swelling up most days & make it harder to walk.
Is aloepecia (hair loss) part of cushings?
I am using a walker & scooter due to ms anyway.
Is there anything I can do to ease the symptoms or get rid of any of the moon face?
Thanks for reading & any responses

deleted_user 04/27/2009

I too have cushings syndrome due to the steriods I am on for my lupus. If you can find anything for the moon face please share. I have gained 82 lbs from the steriods and no matter what I do I can not get the weight off. I can not get off the steriods or I will wind up in the hospital.

deleted_user 05/23/2009

If you have been off all steroids since September of last year, I would recommend you see an Endocrinologist. Your Cushings symptoms should have begun to subside. It would be interesting to see what your cortisol levels are right now. And hair loss is part of Cushings. God bless you.

AusSue 05/23/2009

Thanks for your responses. When I saw my gp a couple of weeks ago he said he didnt need to do a blood test to know my cortisol levels would still be high. Offered to send me to a dermatologist for my hair loss...what the heck is he going to do???
Think I am just going to have to put up with it really. Too much else going on, bruises on hands look really awful & I keep getting more of the red type nruises, told to be careful & not knock my hands??? Still got large purple mark on right hand from what I dont know & now one has come on left hand during day.
More worried about the superficial thrombosis in my foot (blood clots but not in main veins). Foot was red & swollen for weeks then finally went down but has swollen & red & sore again today. Also been breathless & puffy for a couple of weeks even using nebuliser so may have to have chest xrays. Just what I need when having endoscopy (totally separate issue) on Tuesday.
Thanks for listening

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