Hello, my name is Melissa and I have Cushings due to long term Steroid use.
In April of 2012, I was diagnosed with type 2 diabetes and anemia.
About a month after my diagnosis, I started to have repeated sinus infections in my left nostril. After going through a number of antibiotics, my primary did a Cat-Scan which showed a growth the size of a quarter behind my eye.
I was diagnosed with a rare auto-immune disease called Idiopathic Orbital Inflammatory Syndrome (IOIS). Treatment for this was a high dose of Prednisone (steroid. 80mgs per day), which I was being tapered off of but because I was being tapered too fast, the IOIS relapsed so I went back on the high dose again and then tapered from there.
I have been off of the steroids now for 4 months and left with Cushings. I gained 120lbs which is the major of my complaint. I am moody, I do have irregular menstrual cycles, sore muscles (especially in the morning when I wake up), fatigue, memory loss, and a slight hump.
I don’t think my symptoms are as severe as the majority of people here, however, I am 318lbs and extremely misereable with my weight. I have started a nutrition regimen and hoping to drop at least 10-20lbs so that I am more comfortable to work out. I pray everyday that this will go away sooner than I am told it will.
Unfortunately, I am still having issues with my eye as well as problems keeping my sugar levels down. I’m up for any advice and will be more than grateful to share and compare stories with others.
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Dec 01, 2013 @ 23:31:18
Hello Melissa, sorry to hear you are going through so much with this IOIS, I am suffering with the same thing, for four years I had this condition and no one near my house in New Jersey could tell me what this was, I went from hospitals to hospitals to ophthalmologist to ophthalmologist some said it was allergies others infections etc. etc. it was not until I had another horrific episode 4 months ago that we literally ran to Will’s eye hospital in Philadelphia that the doctors there told us of IOIS, first time we have ever heard of that! I also started the 80 mgs of Prednisone right now I am taking 10mgs daily, my neuro ophthalmologist also want me to take 6 moutrin a day but I am not, I don’t like pills, I do have some redness and occasionally my eye swells a little, the doc says it is because they are taking me off the meds little a the time, I don’t know why but it does gets worse when is cold or I am stressed, who is not these days? and if I was not, I will with the IOIS is just nuts, the left eye swells horrific, high fevers and it seems the eye will kill me, only that is enough reason to be stressed out!
I am not over weight, on the contrary I lost weigh, I should be heavier cause I like to eat and I don’t have a thyroid gland, lost it 14 years ago due cancer, I take the same dosage of my thyroid med every day for years and have a great endocrinologist , I guess I am just lucky to be not over weigh, when I close my mouth and go to the gym I loose very quickly any extra pounds I got from treats I should not have, I know when I don’t eat smart i get a few pounds and when I stop and eat right I loose them, is all about self control.
going back to IOIS I thing the doctors don’t know either, I am sorry but I think they are as clueless as we are, I also pray this will go away and I will pray for you as well
Lucy