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Posted 9/15/2009 1:27 AM (GMT 0)
Hi!

First time in but have been following topics since diagnosed; very helpful! 

Background:  early 40s, diagnosed 2 1/2 yrs ago.  Thought I had food poisoning.  After emergency room, dehydration; severe bloody stool, had colonscopy.  Told I had severe uc.  Never heard of it but I now call it The Beast.  Was taking 60mg of prednisone and Asacol 2 - 3x/day.  Finally weaned from prednisone in March and have been doing ok with just the Asacol.  I also take probiotics, fish oil and glucosamine since I developed joint pain while taking the 'roids.  Am learning what I can/cannot eat but that's hit and miss. 

I haven't heard/read about anything about one of my symptons:  I get a really husky voice before a "mini-flare." I can't really explain it; it doesn't hurt but my throat does get kind of sore and I sound like Lauren Bacall!  I guess it's my built in warning system of what's to come but everyone thinks I've got a cold.

While on 'roids, my hair was coming out in handfuls.  It's thicker now but developed a wave/curl I never had!  Anyone else have this?  And does the exhaustion ever go away???

Thanks for all the info you unknowns have provided.  Hard for family & friends to understand although they have been supportive.

 

Posted 9/15/2009 1:35 AM (GMT 0)
The voice thing is interesting!
What I've noticed is that I get horribly tired before a flare, and it's a kind of tired that, I don't know how to describe it, but I can feel it across the skin of my face. (Maybe it's a sign that microscopic flaring has already begun but I just haven't seen bloo or more poops yet.)
I had a horribly sore ankle when in my initial onset horrible flare, but that got better when I went into remission. Now I have arthritis and I'm only beginning the medical journey on that, so who knows if I'll find out if it's related or just another "interesting" thing in life.
My hair didn't come in curly after I got off my 2 years of prednisone, but that is the case with so many chemo patients when their hair comes back in, and pred is often part of the chemo mix.
How long were you on the pred?

Yes, even with the most supportive family and friends, not many people understand the agony or ecstasy we get from analyzing the poops each day! LOL

And - yes, the exhaustion does go away. At this age (53) I have finally learned to try to use it as a blessing in disguise and a chance to slow down and read and doze when I have a chance, but for years I just kept going!
Posted 9/15/2009 1:56 AM (GMT 0)
Thanks for the response! I was on prednisone for about 2 years. Started out low and just kept adding until I hit 60, then when I was down to 5 - 8 bms/day we began to reduce, then increase, reduce etc. like a yo-yo. Doc was very cautious and would only take me down 2-5 mgs at a time. My greatest fear is going back on it. I got the whole steroid package: moon face, hair loss, joint pain, moods and 40 added pounds (I initially lost 25 pounds in 2 weeks before diagonosis. Am up to to 191 right now and can't seem to lose!
Posted 9/15/2009 3:55 AM (GMT 0)
I had a husky voice when I was on 40mg of pred a day. I've heard from other members of this board that they experience the same thing.
Posted 9/15/2009 6:11 AM (GMT 0)
I would say it's most probably from reflux. Do get it looked at because I actually lost my voice from reflux and didn't have actual "heartburn".

With early symptoms of flaring...I do get stomach discomfort and noticably more reflux...

Some commented they liked my voice when it was "going"...hmmmmm....

Welcome to the forum Ellebeth!

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