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Crohn's Disease
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Posted 4/3/2012 9:36 AM (GMT 0)
did my steroids like a good boy for about 4 months, felt real good. better than in ages. weaned off and got done about 2.5 weeks ago..within like 3 days started getting symptoms back that i had just got rid of. by the 10th day i was in the middle of a good old rebound flare. sooo, back on the roids i went last thursday... feel good again already. everything almost back to 'normal"... but of course last week came with fvers every day, badly angry guts, and gas..we cant win . we should just give up i think sometimes. skull
Posted 4/3/2012 10:20 AM (GMT 0)
Aw geez steroids again? Well hope you get some relief while on them.

BTW --- giving up is not an option. Although I admit to that thought myself now & again.
Posted 4/3/2012 11:09 AM (GMT 0)
I'm sorry you are having a rough time. I hope you feel better soon
Posted 4/3/2012 12:18 PM (GMT 0)
I hope you feel better quickly too :-)
Posted 4/3/2012 12:48 PM (GMT 0)
sorry to hear it Randy. Is there no other option (other than weaning even more slowly...) for ya?
Posted 4/3/2012 1:02 PM (GMT 0)
Sorry, Randy. Maybe stay on it a little longer. You know some CDers are steroid dependent, it's not healthy, but it's better than flaring all the time. Once you get down to the low dose, maybe stay on it for a long time. I've had to do that plenty of times.
Is budesonide an option for you? I know with all the surgeries you've had, it might not work the same.

Take care. GB.
Posted 4/3/2012 1:40 PM (GMT 0)
Ouch, that sucks. I'm not in the same boat as you, not having had any surgery for a start, but I feel your frustration.
Posted 4/3/2012 5:36 PM (GMT 0)
I'm steroid dependent :( But I only take 10mgs a day. So far it's enough!!!

Stay well Randy!!
Posted 4/4/2012 4:39 AM (GMT 0)
ive been dependant in the past. longest on was about 4 years straight if i remember right. ive even done the testing for dependancy. anyone else? they take some blood, test it to see the level of cortisone in it. then you get a shot of something to stress your system and take bklood again to see if your body reacted to the stressor.
Posted 4/4/2012 1:21 PM (GMT 0)
Oh, hale, Randy. Some days are diamonds, some days are stones. The dang gravel day doesn't make it any fun either.

Ah well, at least you have a pretty good idea what to expect and as long as it does bring relief you're a step ahead.

(((hugs))),

C2

Posted 4/5/2012 9:38 AM (GMT 0)
yeah if i can stay at 10mg. i should be ok. its not like i got to go find a date or anything ...
Posted 4/5/2012 2:00 PM (GMT 0)
10 mgs is great. No emotional problems, and it seems to keep the inflammation down, not
altogether gone, but definitely down!!!!!
Posted 4/5/2012 8:53 PM (GMT 0)
Randy -

     about 20 years or so ago, after all my resections,etc.,etc. I

decided on my own that 8.5 mgs of Cortisol a day from the adrenal glands just wasn't doing the job for a person with severe Crohn's.

     My doctors agreed with me that maybe I was right, Had my Adrenals checked, they were during the normal production of Cortisol,and they started giving me RX's for 90pills of 5 mgs of

Prednisone at a time and I decided that one a day might do the job, sometimes I take 2 pills and skip a day, sometimes, I might take 3 pills and skip a day or two just to keep my adrenals confused enough so they wont slow down their production, once in a while, if I thought something that had to do with Crohn's was starting, I might take 20mgs two or three times for a day or so. and then go back to 5mgs,

Haven't had a problem with Crohn's since I started that system over 20 years ago.

     I'm in my 55th year of Crohn's now, retired 22 years ago, had, I think 12 or 13 surgeries, I don't keep records - I don't live in the past, I'm all for the future kind of guy.  I only have four scars on my abdominal area,  doctors didn't want me to look like I was clawed by a grizzley so they started going into the same incisions.

     I lost my best friend and wife of 55 years 6 years ago, started dating about 4 years ago and I'm thinking about getting married to a wonderful sexy lady that's just had her 79th birthday.  I had my 85th birthday  in Feb. 

     I still take the 5 mgs or pred a day but now I've added another 5mgs of Cialis a day.

     Randy, I've kept up with you and your Crohn's for a lot of years now and I have a lot of respect for the way you have always handled your problems, please, don't even think of giving up, we never know what's going to happen tomorrow.

     Respectfully -

 

Posted 4/5/2012 9:08 PM (GMT 0)
Randy,
Some days are just blue...don't give up! I'm on Pred right now too...the double edge sword drug. So bummed to come off of it...Scared of the backlash! What is a person to do? Live quality not quantity!
Lots of Hugs
Heather
Posted 4/6/2012 5:15 AM (GMT 0)
thanks everyone...


panayo! where ya been? i've often wondered if you were still around. geez, 85? robbing the cradle with the 79 year old huh? ;o)..

nah, im not giving up, just feels that way sometimes as im sure ALL of you know. randy
Posted 4/6/2012 8:01 PM (GMT 0)
I understand your frustration, I was on flagyl worked like a gem. As soon as i was off a week it came back, so he tried asacol, bad deal. Now im on steroids I hope it works. I have been sick since 1993, but no one would listen, I just fond a good dr,and he listened. I know its hard to do this but be patient, sometimes I wonder if I get sick because its the one thing I dread. I hate getting sick I loose and gain weight and its hard at work. I cant eat out and good by to all the foods I love. So yes I understand but dont give up just be patient. I found the people on this site have helped me alot, thankyou.
Posted 4/9/2012 4:07 PM (GMT 0)
How many times have I said this - Hang in there Randy! I hate that, but at least the steriods are working and you aren't playing the "guess what med works game". My mom was on Pred for about 5 years and it was the only thing to help her. Take Care!
Posted 4/10/2012 3:36 AM (GMT 0)
thanks for the kind words everyone, hanging in there..
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