[erinhermes]

HELLO ALL! SORRY FOR THE UPPERCASE INNLETTERS BUT I'M TOO TIRED TO GET FANCY TODAY..............

HOW MANY OF YOU HAVE CUSHINGS? A DR MENTIONED IT TO ME AND I HAVE EVERY SINGLE SIGN - WAIST WENT FROM A 24 TO A 44 IN UNDER A YEAR, NO PERIODS, HUGE HEMMORAGES ON MY TRUNK AND BREASTS - ALL OF IT.

I AM ON 15/20 PRED RIGHT NOW, SO HOW LOW DO I HAVE TO GO ?

SEEING AN ENDO NEXT WEEK FOR TESTING......WHAT SHOULD I EXPECT?

ANY HELP WOULD BE APPRECIATED...............

ERIN

[rezmommy]

Erin, I don't have anything to offer on the Cushings topic. I just wanted to say that you are ALWAYS in my thoughts and prayers. You have gone through way more than your fair share. Stay strong my friend. Hugs ~ Melanie

[Maxwell'sMom]

Erin, What are your Cortisol levels? At one time, mine were off the charts, but then dropped to a too low level. I still have a diagnosis of cushings, because of that. My cortisol levels are normal right now, but I have been seeing a Endo every four months for it, and Adrenal failure, which is a part of cushings.
However, I didn't blow up like a balloon, I do go through time when I will swell for apparent no reason. And then it will go down. They are torn between Cushing/adrenal, and then PH. Oh, and of course the Kidney disease I have can cause problems with severe bloating.
Do you crave water? I mean really "Crave" Water, that's a sign as well.
I'm going to be praying my heart out that you Don't have this, it's a horrible disease.
Do you have stretch marks from rapid weight gain? I'm on Prednisone as you know, and I have to stay on it. How much are you on now? Prednisone is such a love/ hate drug, it can help with many many medical issues, but can also cause many many medical issues. (hence PH, adrenals, diabetes,and those are just a drop in the bucket)
Erin, read as much as you can about Cushings, but also remember the internet some times gives just the bad, and not every one with Cushings has a death sentence. And your Cortisol levels can go back down.
I know you know, but "love ya"
Love Lizzie
Oh, you'll have to do a 24 hour pee test, and if that shows anything, then a 48 hr one, and then if that shows high levels of Cortisol, then they'll do an MRI to find the tumor. During the pee test part, plan to stay home, as you don't want to carry that jug around with you.
Duh, I just saw that you said 20/15 of prednisone, that's what I'm on, and I haven't had to lower it any more than that even with the cushings diagnosis. (again, I personally think I had a fluke or what ever with my cortisol, and then again, I believe very strongly in the power of Prayer, and what the Lord can do in our lives)

[dog lover]

Erin,
I don't have an actual Cushings DX but I know a few months ago when my Neuro decided it was time for the pred to go he said I was "cushingoid" I was so swollen in my face and stomach. I looked like I was pregnant some days from the swelling. I was also incredibly depressed and had not had a period for months until this week. As for how low you have to go, I can tell you once I dropped to 15mg every other day my symptoms started getting better. I have lost about 10 pounds and my swollen stomach has gone down, I am sleeping again, depression is much better and like I said I am having periods again. I am now down to 5 mg EOD and feel like my old self again. The MG weakness is worse but nothing I can't control with rest and Mestinon. I spent the last 9 months feeling like someone I didn't recognize anymore. I was so irritable and my poor family was probably scared to death of me. I will take the weakness any day over the effects of the pred. You might talk to your neuro about taking 35 mg every other day instead of 20/15 My neuro swears the every other day plan causes less side effects. Hang in there, once you get down a little more on the pred you will start to feel alot more like your old self.
Kendra