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expecting the worst with prednisone

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Posted 6/5/2008 9:08 PM (GMT 0)
i just had another question for all of you out there that have been there.  i was put on pred on monday 20 mg daily to control a flare i've been having for 2 mos.  (they waited a long time b/c i'm pregnant).  i keep reading about all the side effects.  i guess i'm just waiting for them to start and i wanted to know how long do they usually take to show up and what do most people experience and will i still experience them on such a low dose?  I guess I'm hoping for the best, but expecting the worst.  I haven't heard anything good about prednisone.  Also how long did it take to kick most of you back into remission?  My doc said I should see definite improvement in 5 days.  Just wondering.  Thanks to all of you who have been so helpful to me during all of this!  You're all in my thoughts and prayers.
Posted 6/5/2008 9:19 PM (GMT 0)
I have used Prednisone twice, this being the second time. Personally, the first time I used it, I felt great and it was the first time in a while I'd felt well. However, I flared almost as soon as I came off it and it's not been as helpful this time round. I'm not sure about the side effects, I don't think I've experienced many, but I'm probably too ill to notice to be fair!
Posted 6/5/2008 9:45 PM (GMT 0)
Well... when they start all depends on you and your luck. The first time I was put on Pred, the only side effect I had was that I was easily irratated for about a week. The second time I started experiencing weight gain and a little acne and my face started round out a little (moon face). Now this most recent time when they increased my dose I am dealing with a little insomnia and a lot of anger issues.

So as far as side effects go, its a crap shoot.


The good thing about Pred is that it does usually start to work very quickly, the real negative thing is that you can become dependent. I will probably be on some level of pred for a very long time.
Posted 6/5/2008 10:17 PM (GMT 0)
Well I've done two courses, zero side effects and then 3 months later I get diagnosed with Osteonecrosis and am looking at two surgeries. I honestly believe it should only be taken in life or death situations or if everything else has failed.
Posted 6/5/2008 10:30 PM (GMT 0)
How much were you taking? I can't believe that. That's crazy. They have tried several other things. I'm running out of options and I'm pregnant so they had to get it under control. Good luck with your surgeries!
Posted 6/5/2008 11:59 PM (GMT 0)
Prednisone is kind'a like a box of chocolates... You never know what you're goin to get...

There are a huge bag of "possible" side effects, you never know which combination you'll end up with. Some poor people cop the lot, and some like me get barely any. Very much random from person to person.

Hang in there, hope the pred helps get the flare back under control.
Posted 6/6/2008 12:15 AM (GMT 0)
I'm pregnant too (6 months) and have pretty much been flaring since I found out. In the beginning, it was so bad that they actually hospitalized me for 9 days with IV steroids because they were sure that it was going to cause a miscarriage. Upon my discharge, I stayed on 60 mg of prednisone for a few weeks and then started to taper. This was the 2nd time that I was on prednisone. The first time, I felt immediately better, but a few weeks after starting I had joint pain (fingers and knees), moon face, acne and I was VERY irritable (just ask my husband). This time, I pretty much had the same side effects; however, it didn't seem to work as well. I could be wrong, but it seemed like my body had built up a tolerance to it. I tapered off of it even though I still felt crappy (pun intended). I just didn't want that stuff in my body anymore. I really didn't start feeling better until about a month ago. I started using the Rowasa enemas, religiously and they really helped!! I use 1 every night and plan to continue until I give birth in September.

I hope you start to feel better soon! Just know you're not the only preggo chick dealing with UC. :)
Posted 6/6/2008 12:28 AM (GMT 0)
Like Sevrin said - it's all individual.

Each time I've been on pred the side effects come sooner and are more drastic.

Best of luck!
Posted 6/6/2008 1:00 AM (GMT 0)
My advise is to try and stay positive. Alot of the weight gain can be avoided if you focus on eating healthy and drinking extra water so you don't retain salt. Try to eat non proccessed food and don't stress about side effects that you may not get.

Last time I didn't feel really bad untill 5-10 mg and I'm at 30 now and still okay.
Posted 6/6/2008 2:56 AM (GMT 0)

My husband has had UC since January 1, 2001.  about the day after he delivered his last Christmas rush package for UPS after a frenzied (Peak) season with plenty of stress.  That began a 6 month bout with it.  Then he got it so bad he was out of work for 2 years.  On prednisone in heavy doses, in and out of the hospital (TRYING TO SAVE HIS COLON AT ALL COSTS).  Finally, after being on the verge of having colon taken out he recovers quite well and goes back to work.  One year symptom free on Azacol, etc.  Then it comes back after taking Anti-biotics two times in a row -  EEKSSS - don't use anti-biotics if you are in remission.  At least not two sets close together.

Anyway it has been a year and a half since he last worked-he was on 60/80 mg of prednisone at one point.  Took him quite awhile to come off of it.  Then when he was all the way off the symptoms that the prednisone masked came back with a vengence and his bowel perforated!!  Needless to say he has NO large intestine now.  Prednisone - makes you ravenously hungry, lots of weight gain/puffiness in face, you can become moody, flaring quickly so warn your spouse and family.  My husband has cataracts now from long-term use.   Some of the not so fun stuff. 

Oh did I mention his appendix had burst and was walled off by the colon while he was on Prednisone - MIND YOU this IS NOT a side affect of prednisone, just what happened to him.

I said all of that to say this!!  We both feel that we wish he would have had his colon taken long ago and not fought so hard to keep it.  He feels SO MUCH better and is only 2 1/2 months out from the complete Ileostomy surgery.  The second surgery took place two weeks ago - a rectal resection to strip the rectum of any glands or things that could continue with colitis or get cancer.  This surgery is no picnic but in the end when we have our LIFE back we will be thrilled and over joyed.  The bag we can live with, no more 15 pills a day, no energy....   eyes yeah   

I know being pregnant is a different situation but for others this may be the answer.

Posted 6/6/2008 10:50 AM (GMT 0)
The first time I took Pred I was very impressed with the speed in which it worked. I was feeling better the same day and had a huge appetite and plenty of energy (which was nice after feeling low because of the flare). When the course was over I stayed in remission for nearly a year and felt about 80% most of the time.

Unfortunately I flared again this Feb and had to take another course. This time it took a whole three weeks to fully alleviate the symptoms (although the bleeding stopped within a couple of days). Unfortunately after being off the pred for a month the symptoms started coming back (I think the pred had just been masking them) and after a weekend at a music festival they were as bad as before I'd started taking the steroids.

I've managed to get this flare under control by upping my VSL3 to 4 a day and if this doesn't fully put me in remission I'll be augmening with some enemas.

I think it's always worth trying alternatives to steroids because they may actually make things worse for your condition in the long run.
Posted 6/6/2008 1:34 PM (GMT 0)
the pred was a last resort. we tried switching my generic colazal back to name brand, canasa, entocort for a month, cortifoam...prednisone was what they finally decided on. it's been about 5 days, it seems like things are getting alittle better. im just convinced that i'm not going to be back to 100% (or even 95%) until after the baby is here. thanks everyone for all your advice!
Posted 6/6/2008 1:40 PM (GMT 0)
JEG, most of the time short courses of Pred cause inconvenient and annoying side effects, but not permanent ones. As you're pregnant, it's one of the safe choices. Good luck to you and your little one.
Posted 6/6/2008 1:43 PM (GMT 0)
I was put on 60mg and got hot flashes and cried a lot! Though I was very upset by my flare too. I went down to 60/40 alt days and the crying got better a month later. After 3 months was when I got basically every side effect, lovely purple zebra stretch marks. I put on about 15 lbs in one month (Christmas time).

I got down to 5mg but am now back up to 20mg and I try to eat every few hours so not to get ravenously hungry (I had lost 7 pounds) trying to keep it off and lose more. Mostly right now I get weepy, though I am upset at the prospect of the removal of my colon and kidneys. GRRRRR.

Try to be positive ask your GI for some enema's and hope for the best, sorry I am so negative above.
Posted 6/6/2008 5:03 PM (GMT 0)
i think it's hard not to be negative sometimes, but i'm hoping for the best. i just want to feel better so the baby is healthy and happy. it's hard to eat or do anything else i need to do for her health when im feeling so bad. i'm just really hoping this pred works with minimal side effects. ugh. thanks again for all the good advice and support!
Posted 6/9/2008 10:13 PM (GMT 0)
It is true; you really don’t know what type of side effects you are going be to handed. For me though, I have been fluctuating on Prednisone for the last year... been down to as low as 10mg but right now I am taking 50mg. The only side effect I have so far is having a little moon face and my hair seems to grow back faster. But in past years, when I have taken Pred, I would get severe acne, moon face, joint stiffness etc.
Posted 6/9/2008 10:26 PM (GMT 0)
Twenty mg of pred is a low dose. You may not experience any noticeable side effects.
Posted 6/9/2008 11:44 PM (GMT 0)
that's what i was hoping, but it doesn't seem to be working very quickly either.  i don't know how fast it is supposed to work though either.  i have been on it for 7 days.  symptoms are noticablly better, but not 100%.  i still have the urgency and a little nausea when i ahve to rush to the bathroom.  the blood seems to be going away, i just wish the frequency would die down, at least in the middle of the night.  it seems like when i take it in the morning though i have no symptoms untillater in the day.  almost like taking it stops everything.  it's great! maybe it just doesn't last 24 hours?  i don't know exactly how steroids work and from what i've read neither do a lot of people.  thank you for that info though, no side effects would be great yeah
Posted 6/10/2008 12:51 AM (GMT 0)
because you are on a lower dose it will take it longer to kick in( I think). Also(I think) the longer you are sick before you go on pred the longer it takes to kick in. How many times are you going a day? It is worse at night for me also because it makes me scared I wont make it to the bathroom. I don't think for me at least it is "worse" at night just more annoying and worrysome. I think the most important think is you have to give your colon time to heal. Even after I am "normal" a few times a day I still have pain and I am not 100%. This time for me it took about 10 days at 40 mg to get good enough to get on a plane to go to my parents house so at 20 mgs I would give it a little longer.

congrats on the baby by the way!

Jessica
Posted 6/10/2008 1:18 AM (GMT 0)
thanks! ya i've been flaring for 2 mos, so it would make sense that it would take longer. the night time is the worst. even if i just roll over it seems like my colon reacts and i have to run to the bathroom. it's crazy. i guess with every med i'm given, i'm expecting a miracle, which of course everyone on here knows doesn't happen. so i'll give it more time. i just can't wait. i'm getting so impatient and just want to be back to normal. i know that is how everyone feels though. it's so nice to be able to talk to people the understand though and know what i'm going through. it's hard to explain to others outside the world of uc what you're going through. they either don't understand or don't think it's that big of a deal. it's frustrating. thanks for listening everyone!!!
Posted 6/16/2008 3:28 PM (GMT 0)
the pred is finally working have been on 20 mg for two weeks now and have seen relief in the last few days. haven't noticed side effects just yet. am really happy just to be able to join the world again! thanks to everyone!
Posted 6/16/2008 5:28 PM (GMT 0)
glad you are feeling better!
Posted 6/16/2008 5:36 PM (GMT 0)
thank you so much! for everything!
Posted 6/16/2008 5:46 PM (GMT 0)
Hey JEG,

I was on 20mg for a week two weeks ago, I saw some slight improvement, and put myself up to 40mg a day and been on that for almost a week and doing better.

Glad you are doing better!
Posted 6/16/2008 6:07 PM (GMT 0)
ya, today is exactly two weeks and i started seeing improvement on saturday. i was starting to lose hope b/c i've been flaring for 2 mos. i know pred can cause some pretty nasty side effects, but i'm feeling so good right now i'm just trying to focus on that. it was hard to wait though. i tried entocort, but that did nothing. so pred was my last resort drug, especially since I'm pregnant. i'm glad the 40 mg is working for you. when do you start tapering? i see the doc on wed. i just hope it doesn't get worse once they start the taper.
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