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

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Ulcerative Colitis
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Posted 2/3/2009 8:20 PM (GMT 0)
I do not want the bad ones - I am aware of the side effects as MY husband has been on it a couple times.  Just want to know those who have been successful getting into remission and staying there.

Thanks!

I have 30 cm left sided and since I can't take other medication - prednisone is next on the list!

ElaineNY

Posted 2/3/2009 9:53 PM (GMT 0)
It's a double edged sword- if you've never taken pred before, you will LOVE it. It will put you into remission quickly, you'll feel great. You won't sleep much though! It's when you stay on it for long, or can't come off without flaring, then it starts to get nasty. Yes, the side effects are not so good- moon face, buffalo hump, acne, insomnia, thrush.... The worst one for me was thrush, I got it every time right off the bat. But it's easy to treat with an oral solution. The other side effects I also got, but not until I started to come off prednisone. My first course was a magic bullet, I loved it. My third & last course sucked big time- it didn't do anything for my
UC & I got all the horrible side effects.

Posted 2/3/2009 10:31 PM (GMT 0)
Lots of energy.... No more joint pain (for me at least ). Those are the two biggest upsides.... besided the fact that it helps this DD.
Posted 2/3/2009 11:11 PM (GMT 0)
Last time I had a minor flare, I was put on it and it was like flipping a switch to immediate remission. I was kicking myself for not doing it sooner. I felt much better and had no more problems. I was started at a moderate dose and tapered quickly so there were no side effects.
Posted 2/3/2009 11:48 PM (GMT 0)

So far I like your answers.  The thing is most of you take other medication - I will only be on prednisone as I cannot tolerate others.  Starting at 40 mg. I believe for two weeks, and then taper.  He "mentioned" 6MP and rectal foam later - right now just prednisone. 

Thanks everyone so far!

ElaineNY

Posted 2/4/2009 12:23 AM (GMT 0)

Hi Elaine-

Recently I was in a really bad flare and finally agreed to take prednisone. I was kicking myself for not trying it sooner. I also take Asacol and do either Canasa suppositories or Rowasa enemas. After starting the prednisone I really did not need either. The hungry horrors are bad though. Good luck

Posted 2/4/2009 12:27 AM (GMT 0)
oh yeah, you will eat & eat & eat & eat & eat & eat & ...... It's like a manic buzz, driving you into the kitchen! And you feel fabulous, absolutely great. You'll be amazed, really, at how quick your symptoms will disappear.

Posted 2/4/2009 12:29 AM (GMT 0)

One side effect I truly do not need and I remember my husband having problems keeping from EATING!  I am already about 70lbs. obese!  DARN, just lost 15.  Oh well, I will try to fight it - hate the idea of gaining any back and being so hard to get around.

ElaineNY

Posted 2/4/2009 2:55 AM (GMT 0)

"bump" Any mostly positive info on prednisone will help me!

ElaineNY

Posted 2/4/2009 3:12 AM (GMT 0)
Hi Elaine! I have been on steriods therapy about 3 times.

I wish I had a great story for you. I just wanted to let you know I am RIGHT THERE with you. I am weening off my prednisone (on 20mgs) since being released from the hospital. And I am on the 6MP now. A nervous wreck but trying to accept my fate. Anyway just wanted to wish you the best. it sounds like your condition has gotten worse since your last test...as mine has too. In october I just had proctitis and now it has spread about 7 more inches on the left.

hugs!

Posted 2/4/2009 3:16 AM (GMT 0)
I also started at 40... was there for a couple months... my eating binge didn't start till I started to taper. Like I said previously... it gave me lots of energy, and there were to many important things to do than eat. I was HYPER and lost weight while on that High dose... 41 pounds to be exact. WHen I started to taper- around 25 mg- is when the munchies hit and I started to fight weight. Have so far only gained back about 10 pounds. But tapering is when moonface and bloating started for me. SO..... at 40 - if you're like me- there are lots of benefits. weight loss, excessive energy. Even now at 15 mg I still have no joint pain. So.... there are up sides.
Posted 2/4/2009 4:02 AM (GMT 0)
Started on 40mg...tapering down to 30mg right now... I was quickly becoming ill, bleeding, and lots of mucus. 2 months into it, no more blood. A lot less mucus, and I feel better. I am also on the sunflower seed / spinach diet along with other meds listed in my signature line. My appetite has grown, but so far no hairy back zits or anger management issues :)
Posted 2/4/2009 6:43 AM (GMT 0)
Pred may very well help you feel better but once you start tappering down low enough symptoms will likely come back if you're not on a maintenance drug with it, pred is more of a maintenance drug booster or used for a short break from symptoms but it's not likely going to actually put you into remission on it's own.

:)
Posted 2/4/2009 3:33 PM (GMT 0)

pb4 - I note others on other drugs too.  Would 6MP be a maintenance drug?  I can't tolerate any of the others tried them - made me very sick like the flu.  No mesalamines for sure.  Guess I will have to cross all the bridges as I come to them.

ElaineNY

Posted 2/4/2009 3:52 PM (GMT 0)
I highly recommend the book Coping with Prednisone. Learn how to minimize side effects.

http://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603/ref=sr_1_1?ie=UTF8&s=books&qid=1233760982&sr=1-1
Posted 2/4/2009 7:50 PM (GMT 0)
I loved prednisone for the most part. Besides the fact that it helped my UC, I loved the energy it gave me. I only had to sleep 5 hours a night and still felt great! Try and avoid salt and drink lots of water.
Posted 2/4/2009 8:40 PM (GMT 0)
     Hi Elaine,

            Prednisone is the ONLY drug which helps me attain remission.   Rough year last yr...had to be on it seven months.  Not happy about that as I have osteoporosis already.  I am on the 6MP.  Have been on it for five yrs.  It does NOT keep me in remission.  For the last four years I have at least one flare per yr.  Maybe since my last flare lasted seven months I'll be able to skip a yr..lol.  Had encouraging news from a GI surgeon I saw last yr while flaring...he said that if it were not for the 6MP he thinks my condition would be a lot worse.  My UC is in the rectum and (keeping my fingers crossed) has not traveled further up the colon.  I cut my dosage down to 50 mgm though.  My white count is too low.

Posted 2/4/2009 8:44 PM (GMT 0)

Christine - I would be interested to know why you are happy to be off prednisone - side effects?  I am really lucky to have this only less than a year but no remission in all that time.  Has 6MP been easy to "live with"?

Thanks!  ElaineNY

Posted 2/4/2009 8:55 PM (GMT 0)
     My GI doctor refers to prednisone as the BEST WORSE drug.  Meaning that it does wonders for inflamation but plays havoc with your system.  It can increase your blood pressure (which it does to me...to extremes), your blood sugar and cause osteoporosis.  It lowers your body's ability to fight infections.  But...please don't let this stop you from taking it for the inflamation.  I KNOW all the things prednisone does...but, should I flare again I wouldn't hesitate to take it.

     I see where you take medication for hypertension...if you have a blood pressure monitoring devise at home...please, please make sure you take your blood pressure three times a day while on the prednisone.  My pressure had gone up to 210/110 last May and that was one of the main reasons, besides the UC, why they kept me in the hospital.  Should your pressure go up, ask your family physician about taking water pills.  My cardiologist recommended them AFTER I got out of the hospital.  Now how come no doctor, out of the myriad of doctors, told me that in the hospital?

     6MP, other than the thinning of my hair, has been very easy to live with.  My white count is somewhat low but the doctor doesn't seem to be alarmed.

Posted 2/4/2009 9:43 PM (GMT 0)

Christine, I really appreciate your  input on this.  I just don't have anyone I know who can tell me much and you are nearer to my age also.  Yes, I have hypertension for many years - somewhat related to my obesity.  I do have a monitor at home and will keep close eye on it. I also have a wonderful primary care doctor to help me.  Blood sugar has always been in the normal range but my husband has a monitor for that if I wanted to have him check it.  I have "bones of a teenager" according to my last bone scan last summer.  I take Calcium with/D.  I do have LOTS of hair - pure white.

I guess my biggest concern would be sweating as I have night sweats a lot anyway.  Major concern with my moodiness as my husband had that problem and we found it difficult to deal with - both of us.

Thanks so much!  ElaineNY

Posted 2/4/2009 10:07 PM (GMT 0)
     You're quite welcome Elaine.  How is your husband doing?  I read where he had lung cancer.  That is tough to deal with.  I have a friend who is going through radiation because of breast cancer.  She just finished her round of chemo.  Her husband is having a rough time with Parkinson's.  They are both relatively young.  She is my age, 62 and he is 65.
Posted 2/4/2009 10:37 PM (GMT 0)
Elaine,

No personal experience with prednisone, but both my mother and father have been on it numerous times for various problems. My dad gets grumpy and puffy on it, but my mom absolutely loves it. It gives her tons of energy, makes her feel great, and doesn't make her gain weight. (She is overweight as well.) I hope your experience will be like hers!

A friend here locally who has Crohn's has done periodic short bursts of prednisone over the last 10 years, and it works wonders for her.

Such a bummer to hear that your UC has extended upward since October. Do you think it might be the mesalamines making things worse? (I worry about that for myself, though I haven't had a scope since June and don't really know what's going on in there...)

I know you've been dreading this step for so many reasons. Am sending you a big hug!
emory
Posted 2/4/2009 11:47 PM (GMT 0)

Christine and emory - my husband is doing well.  He has been in remission for 9 months - has it in both lungs.  His ct scan to see how things are will be next week.  We have our fingers crossed but he has no new symptoms anyway.  He handled chemo and radiation, etc. so well I hate to whine and complain - but he is used to my whining, I think!!

Yes, talked with my NP today and she reassured me that predisone "should" put me into remission pretty fast.  I hope she is right.  She said the doc and her really don't have many ways to go with me now.  Yes, my UC had spread 10 c.m. since October which is about 4 inches.  The only medication I have taken since then is Proctofoam and hydrocortisone enemas - they both made bleeding and cramping worse.  Hoping oral prednisone will do the job!! Doc prescribed a three month plan starting with 40 mg.

Thanks for reply and obviously caring - hope you are all doing well.

ElaineNY

Posted 2/5/2009 7:13 PM (GMT 0)
     Okay Elaine.  Good luck to you!  Remember to keep a check on that blood pressure!!!  Glad to hear your husband is doing well.
Posted 2/6/2009 8:29 AM (GMT 0)
For years prednisone was the only thing that ever worked for me. And I had been on maintenance doses for prolonged periods as well.  As you already know and have heard, its all the "other" things that go along with prednisone.  If you are given high doses I recommend to wean off slowly.  But it does seem some people are able to come off their higher doses more quickly than others.  I guess in the end you go with what your doctor recommends, especially if you have a good rapport with him.  Good luck,

---------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily

   

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