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Going on Pred tomorrow for the first time

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Posted 3/19/2012 1:48 AM (GMT 0)
I've been flaring off and on (mostly on) for 9 months now. It started when my son was 6 weeks old. 4-5 bm/day, urgency, diarrhea, blood. I've had enough and I think I'm ready to take the next step. But I'm also scared because I've never been on steroids. I'm on lialda, canasa and I added hydrocortisone enemas last week with no improvement. What have been some of your experiences with pred? Were you able to taper easily the first time? How long did it take to kick in? How long did the remission last? I'm just looking for some positive experiences. My doctor wants to start me at 40mg and taper off over 4 weeks. Thanks in advance for sharing.
Posted 3/19/2012 2:43 AM (GMT 0)
The first time I took pred it worked great! Within a day or 2 I was almost back to normal, no problems tapering. I did have night sweats and I felt like I was in the third person until I had tapered some to 30mg.
Posted 3/19/2012 3:48 AM (GMT 0)
I was on pred for nearly a year (I hate to admit that). I wasn't able to taper off without having my symptoms return. I have to say that if I had one tip that I could have followed, it would be, stick to your guns. If you're on pred and you're having trouble tapering down, be prepared to make a decision about how you want to handle it. I didn't want to go on 6mp and I tried eeverything to avoid it, from enemas to antibiotics to oral 5ASAs, I tried everything I could to avoid 6mp and in the end, I ended up on it anyway. I wish I had just given in sooner rather than having all the horrible side effects from the prednisone (some long-term, maybe perm damage to my bones... + I am still over the weight where I want to be). If you have trouble tapering and you try a slower taper and still have trouble, have a plan in advance. Speak with your GI and find out exactly how long you will be on the medication and make a plan for if you can't taper down & stick to it. I regret staying on it for as long as I did.
Posted 3/19/2012 4:23 AM (GMT 0)
The bad news is that prednisone sucks to be on. The good news is that it works quickly and effectively, so your symptoms should be dying down soon.

I don't want to scare you off or anything, but you should be prepared for what it's like to be on it, and what it's like to taper off. I have a whole blog post about prednisone - check it out by clicking on the link below. Hopefully you won't have to go on it more than once and not for very long, which I think is more likely if your UC is mild/moderate... but if you do become "prednisone dependent" (meaning your symptoms come back every time you go off of it) switch to the big guns sooner rather than later. You don't want to deal with pred any more than you have to.
Posted 3/19/2012 9:12 AM (GMT 0)
I felt fine on pred, a little more touchy, maybe, but I suggest tapering slower, 20, 15,10,7.5,5,2.5. My first GI did not do tat and I felt awful and had no idea it was the quick taper. My second GI does it the way I stated. Definitely look into it, the taper.
Posted 3/19/2012 1:51 PM (GMT 0)
     Worked great the first time for me too, but over the years (suffered with UP for twelve years), I became prednisone dependent.  You do NOT want that to happen.  The taper sounds ok.  I was on a 5 mgm per week taper, so it was a bit slower.

     Very important to take calcium with D while on the prednisone.  My GI doctor failed to tell me that and I now have full blown osteoporosis.

Posted 3/19/2012 2:28 PM (GMT 0)
I was on Predisone about 15 years ago and am on it now. Get ready for moon face, swollen fingers, feet and neck and weight gain. It does help with the UC. It seems to form stools and less blood.
Posted 3/19/2012 3:04 PM (GMT 0)
I've been on pred twice. The first time it helped within a few days but I did gain weight, have the moon face, night sweats(daytime too), crankiness etc and I didn't have any problems tapering. The second time it helped until taper time but I then just increased by enemas and that is what eventually got me off of it. I would prefer to never be on it again.
Posted 3/20/2012 12:36 AM (GMT 0)
My second time on prednisone and I have reacted fairly well to it. First time, it kicked in right away (high dose-60mg) and the second,it took about a week (30mg) Minor facial swelling, some shakiness, but overall, the prednisone worked really well...except when I tapered off. Symptoms start returning around 10mg. I have now started imuran so am tapering pred until that starts working. Everyone does react to the the prednisone differently. It is definitely not a drug you want to keep going on though! I resisted the imuran initially after the my other drug options/life style changes didn't work and thT landed me back on the prednisone. Good luck with it!
Posted 3/20/2012 12:49 AM (GMT 0)
prednisone was the hell drug for me. and i definitely don't think 4 weeks is the amount you'll be on it. it takes longer to taper off of 40 mg. it took me 3.5 months. it was a really hard drug to be on. i gained 40 lbs in two days. it was very painful on my joints and i now have neuropathy in my feet. also, got tons of acne and stretch marks. ughh. never going on it again.
Posted 3/20/2012 2:11 AM (GMT 0)
It is different forveveryone, I actually felt great on it, good energy, I didn't get the moon face too bad, until my fourth time. So don't worry yet, but it is not good to use as a fix, but good luck.
Posted 3/21/2012 5:21 PM (GMT 0)
Thanks for your replies. I was so ready to call my Dr. for the Pred prescription, but I started feeling better Monday and today it's noon and I've only had 1 bm, solid and no blood. I'm trying not to get my hopes up, but maybe the cort enemas are working afterall.Anyone know how long I can take them and do you think I can double up on them once in a while if I get afternoon symptoms? I plan on calling my dr. today to check with her, but I'd like to know your experiences. I was using Canasa suppositories in the afternoon, but I cut them out since Monday since I didn't feel like they were doing anything for me anymore. Also does anyone know the best oral 5-asa for left sided UC? I'm on Lialda, but thinking of switching to Colazal.
Posted 3/22/2012 3:43 AM (GMT 0)
     Glad you are feeling better without going on the prednisone.  I was on the cort enemas...felt like forever.  I know it was a year at least.  My ulcerations were confined to the rectum.  I took Colazal for ten of the twelve years I suffered with UP.  The doctor first had me on Asacol, but Colazal is better for treating proctitis.  The only thing I believe it did was keep the ulcerations confined to the rectum.  When I had my surgery in 2010, my colon was NOT diseased but my rectum was a mess.  BUT when they take the rectum, the colon has to go right along with it sad .  
Posted 3/22/2012 12:29 PM (GMT 0)
I've refused to take prednizone for the 10 years that I've had UC and do not regret it.
People I know who have taken it have had hip replacements, etc as a result of damage to bones not to mention other horrible side effects.

Have you considered dietary changes and natural supplements. Lots of info on both at www.cureforulcerativecolitis.com
I have a lot of success using slippery elm bark powder and probiotics along with other supplements and vitamins. Have also recently begun using LDN.
Check out www.ldnscience.org and other LDN related websites.
There are so many things you can try before introducing a drug like pred into your body.
Posted 3/22/2012 6:08 PM (GMT 0)
How long are you on Lialda? It took me several weeks in a bad flare while taking it until I started doing well.

Your recent developments look very promising!
Posted 3/22/2012 9:15 PM (GMT 0)
Chris1946- Were you flaring all those years on Colazal? Why was your rectum wrecked? I'd hate to think I'm in remission when there is still damage going on.

Itsalwayssonething- That's great you've been able to avoid it. I'm really hoping I can as well. I am cautious of supplementing because I'm still breastfeeding my 10 month old. When he stops, I'm going all out though! I started reading up on an antifungal diet so I'm going to give that a shot for a while. I've given up all sweets since I had my son and I drink soy milk. My problems are cheese and bread, but I'm determined to cut those out for a while until I get healthy again.

coffeeman- I've been on Lialda since I was diagnosed 5 years ago. It worked so well at first, but I feel like it's not getting far down enough. Today was looking good, but I had a 3rd bm and there was definitely some blood. I'm waiting for my GI to call back and maybe switch me to Colazal or give me the ok to use the cort enemas twice a day.
Posted 3/22/2012 10:17 PM (GMT 0)
Is it a good idea to take prednisone when breastfeeding?
Posted 3/23/2012 12:12 AM (GMT 0)
It's classified as an L2 drug, which means it's been studied in breastfed infants and no adverse reaction has been shown. I couldn't believe it, it seems like such a powerful drug. I wish I could wean him now, but we have a big trip to England coming up to see my in-laws and it will be so much more stressful if I can't feed him on demand. I just got my dr. to prescribe Colazal so hopefully I won't have to take Pred. If the Colazal doesn't make me right in a week, I'm going to take Pred because I can't do this trip with 2 kids in a flare.
Posted 3/23/2012 12:27 AM (GMT 0)
The stress of traveling overseas with 2 kids is enough to put you in a flare! Make sure to have back up meds with you just in case.
BTW, my GI does not recommend breastfeeding while on Prednisone. I literally stopped overnight when I started Pred so I had a double whammy of UC symptoms and painfully engorged breasts. These are not easy choices for a mom. Hang in there!
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