Re: New to this board; Decades of topical steroids and CS -- Steroid Warning Network

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Date Posted: 09:36:12 01/06/07 Sat
Author: Susan
Subject: Re: New to this board; Decades of topical steroids and CS
In reply to: Ivy 's message, "Re: New to this board; Decades of topical steroids and CS" on 09:01:23 01/06/07 Sat

>Susan,
>
>I am very glad you found this site and were able to
>speak with Leslie! She has helped me tremendously
>over the years!!

Thanks, Ivy.

I have been on steroids on and off
>for 4 yrs and now on full time for 2 yrs. I am on
>them for autoimmune disease related autonomic
>dysfunction (which is a fancy way of saying my immune
>system attacks my vegas nerve, which controls pretty
>much every automatic function in the body).

Ivy, as a long time sufferer (many years undiagnosed, then misdiagnosed as CFS) of tick borne diseases, I'm familiar with and have experienced many symptoms of global dysautonomia. In addition, my DM type 2 went undiagnosed for many years, til I bought my own glucose meter. Treating/controlling both of these has eliminated most of my autonomic and neuropathic symptoms. I know from my own expeience how uncomfortable and scary your symptoms are.

The
>steroids were in HIGH dose for the first year and 1/2
>and now I have been able to wean down to 7 mg of
>prednisone thanks to my rheumatologist and the drug
>6-mp. 6-mp is a steroid-sparing drug (chemo, really)
>that helps the steroids fight the inflammation. It is
>a scary drug that has a whole host of potentially
>wicked side effects, including liver failure and
>pancreatitis. I have not had these YET...THANKFULLY!
>I get my blood checked every 2-3 months now just to
>make sure :)
>
>I know how you must hate doctors now, and trust me, I
>was there too, but sometimes all it takes is finding
>the one that knows something just a little newer,
>different to get the ball rolling on finding a BETTER
>treatment plan!

I've appointed myself as the one and only person in charge of my treatment plan. I'm the Decider in Chief. :-)

I don't have the stomach or heart to kiss another frog. I think that malpractice *is* the new community standard and I'm tired of looking for a needle in the haystack.

I was completely disabled last year
>thanks to one doctor's idea of how to treat my
>"asthma" flare up...HIGH doses of solu-medrol (an IV
>steroid)...I ended up in a wheelchair due to muscle
>myopathy, fainting after urination AND eating dinner,
>extreme hair loss (got a wig for that), and I looked
>like a heffalump (from Winnie the Pooh) :-P. Since
>starting the 6-mp (which was NOT an easy decision for
>me to make), I have lost quite a bit of the
>swelling/Cushing's, and am able to eat and urinate
>without falling down LOL...and I am walking EVERY DAY
>for over a mile on the treadmill and everywhere else I
>can :) It is not an easy road, but DO NOT GIVE UP!!!
> There are GOOD docs out there that are willing to
>give new treatments a try...

Ivy, I haven't given up at all, I'm taking good care of myself and working on adrenal recovery. I'll just never defer to any doc ever again, when it comes to deciding what treatment I get for anything.

>Please let me know if there is anything I can do to
>help, either on here OR privately!!!

Thanks, Ivy, that's very kind of you.

Susan

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