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I am 19 years old and I recently was taken off of it 2 years ago ...

Posted at 12: 8 PM on Oct 10, 2007 by tsmith07, #24235
I am 19 years old and I recently was taken off of it 2 years ago when I switched doctors. Prior to the switch I had been on it for 16 years. I prob have some of the worse side effects. Because it causes an increase in appetite I ate but I didn't eat all the time, and I ended up gaining over 100lbs. I have a black-brown ring around my neck and for the longest time I thought it was dirt that wouldn't come off so sometimes I scrubed my neck sometimes to the point that it was raw.I have bad acne on my back and its just horrible.I cry every single night because of the side effects.I just want to know if anyone on here can help me.
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Reply about 1 year ago on Oct 16, 2007 by starryeyedkid, #2409

I just read your post and wanted to let you know that I share similar feelings. I'm 19 too and I was diagnosed in May of '06 with an autoimmune disease that's forever changed the way that my family looks at me. I started taking 60 mg of prednisone and within two months I wasn't the same person anymore. Not until I was below 20 mg did I start behaving like myself again even though the medicine had drastically changed me. It was really painful, I was always getting cramps through every part of my legs, I also got them in my eyes which made it look like I giving someone an extended (2 minute) wink. Cramps in my hands were the worst because of course I wanted to eat but holding a knife and fork was difficult, lol. The worst aprt of being on the prednisone is that I have stretch marks now almost over my entire body, in the oddest places (like the backs of my knees?) and then even though I took fosamax I developed AVN in both of my hips and I'm pretty sure I have it in my elbows too.

This is kinda depressing. I have to go to class now, but message me back if you feel like talking at all.

I cry at night too.

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Reply about 1 year ago on Oct 20, 2007 by paperworkfairy, #2481

HI,

Look I don't know if this will help but i will just tell you what i went through:

I was on prednisone for ten years and have been off it for three years.
I went through absolute hell when i was on it and when i was coming off it and when i was not on it at all :)

I had severe mood swings, my face would puff up, my stomach would puff up, a lot of my hair had already fallen out so i had to get hair extensions, my joints became very sore.

Basically what is happening to you is that your body is trying to produce its own cortisone. When you get on the prednisone it shuts down your adrenal glands so that your body is not producing its own cortisone anymore.

Because you have been on it for so long then it is going to take a long time for your body to work things out. Be prepared this is not going to be an easy ride. Your body is going to go through adrenal crisis as it tries to work out how much cortisone to produce.

When I first started to go through it, I started throwing up and could not keep anything down. It was awful.

It has taken me three years to get back to mainly normal. Most of the puffiness has gone and the other things :)

I suggest that you either go and find yourself a good endocrinologist or you do what i did which was to find a naturopath.

You may have what is called Steroids Induced Cushings Syndrome. This could be why you are not losing the weight etc. This website really helps because you will be able to talk to other people who have Cushings and may be able to point you in the direction of a good endocrinologist. Here is the website: http://www.cushings-help.com/

I got through it by natural means by seeing a naturopath and going on a lot of supplements.

If you want to email me then email me at paperworkfairy@gmail,com

I know that things are really hard right now but hang in there, you are not alone, I have been through it too :)

Take it one day at a time,

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