Re: Steriod reduction -- Steroid Warning Network

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Date Posted: 14:14:04 05/26/07 Sat
Author: Ivy
Subject: Re: Steriod reduction
In reply to: Karen 's message, "Re: Steriod reduction" on 14:02:10 05/26/07 Sat

Karen,

The 6-mp is DEFINITELY helping my breathing...BUT, I have a rather unique problem. It seems that my vegas nerve is what becomes inflammed (thanks to an undefined mixed connective tissue disease). Since the nerve controls almost every automatic function in the body, breathing is definitely on it's list. When the nerve inflames, my throat closes/vocal cords close/small airways close, so high dose steroids are needed to pop them open. The nerve also controls GI function, so I have wacky digestion...my stomach moves too quickly, my small bowel moves too slowly...a lower dose of steroids is needed to control that along with motility drugs. The nerve also caused vaso-vegal reactions after I urinated and ate only when weaning down on the steroids (which basically meant I passed out after eating and peeing LOL). The 6-mp is actually what helps with that. For me, the 6-mp is working to keep ALL the inflammation at bay. It takes much more for me to flare up then it did before. The docs were very clear with me that a low dose of the 6-mp would NOT work to help me wean down on the steroids. I started at 25 mg and worked my way up to 100 mg...but that dose was too much for my little body (I'm only 4'11, and "normal" weight was only 105 lbs), so I stopped the meds for 1 month and am doing great on 50 mg of the 6-mp now. I was also told that the 6-mp is NOT the only steroid sparing drug out there, and that if this one did not help, there are others out there to try.

I am NOT a doctor, but I just wanted to give you my experience with all these different meds. I also tried the chiropractic route to help me regain mobility (the steroids caused a myopathy in my hips) and he gave me some great stretches to do when I am in spasm from the steroid drops, but he did not help my body lower the steriods...it was the drugs. I am still a bit gun-shy about going to a DO, but trusting your docs are the MOST important part of your care...do what you feel is best for you!!!

Ivy

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Replies:

Re: Steriod reduction -- Karen (Thanks!), 16:40:59 05/26/07 Sat
- Re: Steriod reduction -- Ivy (Definitely Understand!), 09:50:57 05/28/07 Mon