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Back from sigmoid - any GOOD stories about prednisone needed...

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Ulcerative Colitis
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Posted 2/6/2009 9:05 AM (GMT 0)
Hi
My advice to all of those who are taking prednisolone is that please take it under medical supervision and try to taper down at the earliest. I had myself had it for 16 years and let me tell you it has several side effects. Infact, God forbid, if someone on steroids has to undergo as surgery, the healing becomes most difficult and the infection chances are very high. The incision given to me for J pouch surgery did not heal/the tissues would not form for over 4 months and then I had all sorts of skin infections. So be careful while taking these steroids. Try alternate medicines instead. I was suffering from UC since 1989 and had surgery in 2005. Please monitor your blood sugar levels if you take prednisolone.
Posted 2/6/2009 4:06 PM (GMT 0)

Thank you!  I am picking up my prescriptions today - starting at 40 mg. tapering over three months if Ican read my doctors writing!  I do need knee replacements and wondering how that will go - I will call knee surgeon and find out I guess.  I know my GI doc mentioned 6MP after he sees if the prednisone works ok.

By the way, I have tried MOST of the other medications that should work and cannot tolerate mesalamines, etc.

ElaineNY

Posted 2/6/2009 4:16 PM (GMT 0)
     Elaine, you probably are aware of the fact that you cannot quit taking prednisone cold turkey.   A close childhood friend of mine suffered from Crohn's (she is now deceased), stopped taking the prednisone on her own and developed Addison's Disease.  So just be careful.
Posted 2/6/2009 4:22 PM (GMT 0)
Oh, yes, Christine I am aware you have to taper and I remember what that was like for my husband who has taken in in short bursts for COPD over the years.  I will follow instructions carefully even if I end up in bed because of it.  Now I am concerned about my knee replacement.  Always something but I need to get this UC under control first.  ElaineNY

Posted 2/6/2009 5:16 PM (GMT 0)
It works for me. The side effects are annoying, even weird, but not as bad as a UC flare so it's worth it. And they go away once I've tapered off. Even after all these years I don't have any bone density problems, but I do exercise. The energy is great, you just have to get up and not just toss around in bed because you can't sleep. I get lots done!

I usually start with 30 mg, hopping up to 40 now and then to kick it out, but don't go under 15 or 20 until things are under control. It seems some folks taper too quickly, before they are actually better. I've never been hospitalized for UC (although maybe I should have been sometimes), only once for anemia.
Posted 2/6/2009 5:42 PM (GMT 0)

Starting with 40 mg for two weeks - can't read the rest - have to have the pharmacy tell me what it says!

I can't get up in the night and do anything because I would disturb my husband who has cancer and my little dog who would insist on playing or going out.  I hope I can sleep.  I don't sleep good now due to overactive bladder, etc. so nothing new.  I can listen to my radio which usually is what I do.

ElaineNY

Posted 2/6/2009 6:50 PM (GMT 0)
I would get satellite radio then, if I were you! :)
Most times I would go to bed at about 11 p.m. and be wide awake by 4 or 5 a.m.
Posted 2/6/2009 8:29 PM (GMT 0)
     Elaine, I had sleep issues while on prednisone...terrible insomnia.  They gave me Ambien CR in the hospital, 10 mgm.  I got a prescription for it when discharged but for only 6.5 mgm.  I was pretty much addicted to it and the 6.5 mgm just wasn't doing the trick.  Then I decided to just try weaning myself off them.  Now I hardly take them at all and sleep fairly well.

     You can take your entire dosage of prednisone all at once in the morning you know.  Maybe that will help.  I had a pic line while in the hospital so I think they put the prednisone in at different times of day.  I know they had given me 60 mgm of prednisone in the pic line.  Then my blood sugar skyrocketed and they had to give me insulin.  UGH!  What an ordeal.  Hope I never have to be hospitalized with UC again....or for anything for that matter.  Hate hospitals.

Posted 2/6/2009 9:01 PM (GMT 0)

As someone who has never had prednisone, I have found this thread very useful.  (thanks Elaine)  Some of the posts makes me want to go out and score some right away.  devil  

I had only heard bad things about it especially from my (soon to be ex) Gi who said it only should be used if there severe weight-loss, anemia etc.  It is nice to read the good stories too.   

Posted 2/6/2009 10:23 PM (GMT 0)
kops.... I am willing to bet that after a day or two on the Pred... your knee will feel better. Not saying you don't need surgery anymore, but you will feel a lot better.. It is a good drug for bad joints.... My knee is almost bone on bone... getting due for a replacement myself eventually and the pred makes it feel wonderful. As for insomnia... well Ya can get alot done.. LOL
Posted 2/6/2009 10:26 PM (GMT 0)

bubba - wish I could do without the knee replacments but both are very bad and should have been replaced a few years ago.  I am very knock-kneed and in pain.

As for getting a lot done - re:insomnia.  I can't be up and around the house because I would disturb my husband and little dog.  Penny, my dog, is blind and would bark all night.  I will just have to get some help with sleeping or ?  ElaineNY

Posted 2/6/2009 10:30 PM (GMT 0)
I found when I was on 40... i slept better if I took 20 in morning, 10 at lunch, and last 10 before 5pm. Maybe that will help. I slept okay as long as I didn't take any after 5pm. But I was still up really early. like around 4 am and I didn't go to sleep till midnight or after. I only could sleep about 4 hours a night max. But like I said... the joints felt great.
Posted 2/6/2009 10:33 PM (GMT 0)

I was instructed to take all with breakfast.

Anyway, I am confused reading here that some people get such joint pain FROM prednisone and others get relief.  I already have very sore joints and osteoarthritis in knees, elbows and sometimes ankles!

ElaineNY

Posted 2/6/2009 10:36 PM (GMT 0)
My doc always proscribed it for severe gout attacks also.. which is joint related. I have bad arthitis. even at my age. and the pred has been a god send that way. as well as for uc... just the other side effects are hell. Guess we'll find out how it affects you. keep us informed. and we'll hope for the best.
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