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Ulcerative Colitis
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Posted 7/20/2012 3:31 AM (GMT 0)
I was on prednisolone treatment for a month and a half starting at 30 mg daily. It was my first time and it was a success. However, when my GI tapered down to 5 mg daily and on my last day of steroid use (still at 5 mg daily), I started bleeding a little and ever since then after I stopped taking the steroids, I've been bleeding on every BM so it's been about 3 weeks now. While being on steroids, I was taking my regular pentasa pills and probiotics, calcium, and another pill to help protect the walls of my stomach.

When I got off the steroids and to this day, I take my regular pentasa pills , probiotics, plus pentasa enemas nightly. The enemas used to help stop the bleeding but it hasn't stopped :(

Could this be a side effect from the steroids?
Posted 7/20/2012 7:37 AM (GMT 0)
No, because you've stopped them right. i've read alot of people on here getting symptoms back after stopping steroids. the steroids were keeping it at bay.
You have 2 options i can think of. go back on pred at a low dose. but thats not a long term solution
or get a steroid enema or suppository. this mite be good to have anyway. you could alternate it with the pentasa enema am pm. either way best to contact your GI as you're not quite there yet.
JU
Posted 7/20/2012 11:07 AM (GMT 0)
The only thing that stopped my heavy bleeding ( which lasted 1 1/2 years) was LDN, low dose naltrexone.

For many, steroids is not the answer.

I hope you find something  that works for you.

Posted 7/20/2012 6:50 PM (GMT 0)
You could ask your GI to prescribe you a steroid enema in conjunction to the Pentasa enemas...use it during the day. It might just give you the boost you need to taper.

Were you on the Pentasa while tapering the pred?

q
Posted 7/21/2012 4:07 PM (GMT 0)
I had the same problem.
I had to go back up to 10 mg of prednisone, and taper back down super slowly AND start the
cort. enemas, then moved to using Rowesa enemas once the bleeding stopped.
so it was like this:
10mg pred. and cort. enemas at the same time for a week or two, then drop the Pred to 5 mg and keep
going with the cort. enemas for another week, then drop the Pred and keep the cort. enemas going.
Then start the Rowesa enemas everyother night and use the cort. enemas on the other nights.
It took a few weeks for sure, but I finally got off the prednisone and the cort enemas AND the Rowesa
and now just use the Canasa suppos. to keep it all at bay. Along with my Lialda orally.
Good luck and keep at it.
Mary A.
Posted 7/21/2012 5:57 PM (GMT 0)
Sounds like the taper was too fast. From 10mg to Omg you can taper by 2.5 every 5-7 days or by 1mg every 7-10 days. It depends on your body, how long you took it and at what dose. Some go even slower and taper every 2 weeks. Of course your GI should give you the guidelines because each case is individual. Steriod enemas and mesalamine enemas can help mitigate the symptoms as you ease off the steriods. All things to discuss with your GI.
Posted 7/21/2012 11:30 PM (GMT 0)
Your body produces 8 per day. So take remaining pills and with a blade slice them up and carefully step your way down from 10 again, this time at a pace your body can match as it ramps up its own 8 mg per day cortisol.

Been there many times, many adrenal shock from this.
Posted 7/22/2012 4:44 PM (GMT 0)
InsoFla,

How did you hear about Naltrexone?   Was it from your GI?  It appears it's not FDA approved.  Just looking for anything that might help.

Posted 7/22/2012 6:31 PM (GMT 0)
You can go to lowdosenaltrexone.org and find a lot of information. My son has had his prescription for about 3 weeks now but we weren't able to start it because he's been on steroids. We are finally starting it tonight. I've heard it can take anywhere from several weeks to months before it kicks in. I really hope this helps him. He's been in a flare since July 2. This is by far the worst flare since diagnosis in March 2011. I think LDN is definitely worth trying.
Posted 7/22/2012 7:54 PM (GMT 0)
Did your son get his prescription from his regular Dr?  My GI is very old school and probably has never heard of low dose naltrexone.  before my colon has to come out I want to research and try just about everything.  let us know how your son responds.  I too am on pred and trying to taper down.  I have another five weeks before I'm off.
Posted 10/23/2012 2:54 PM (GMT 0)
Penny, did you get your bleeding stop? I took 40 mg for 3 weeks and now 30 mg for a week. I see blood sometime too. So wondering, how are you doing with bleeding?
Posted 10/23/2012 3:35 PM (GMT 0)
I was bleeding a fair amount and canasa stopped it in its tracks..My issues are located in the lower left side of the colon..

Steve
Posted 10/23/2012 6:08 PM (GMT 0)

twiggs said...
I was bleeding a fair amount and canasa stopped it in its tracks..My issues are located in the lower left side of the colon..

Steve

Boy I wish it was easy like that. that used to work for me. I've been doing 1000mg Canasa nightly and still having blood.
Posted 10/23/2012 10:44 PM (GMT 0)
Been in your position for quite a while, i would recommend asking your GI about a medicine called Mezavant as far as im aware its a more potent alternative to the pentasa tablets and instead of taking 8 a day you only take 4 (2 in the morning, 2 at night), this medication helped me considerably, and as the others have suggested take a steroid enema, i currently use one called predfoam, i find the foam enema's easier to keep in..

hope u get better
Posted 10/24/2012 12:49 AM (GMT 0)
I'd definitely put in a vote for trying cortisone suppositories or enemas. That was the only thing that got my bleeding to stop this time around. Prednisone and Rowasa worked in the past, but just couldn't seem to do it this time. Hoping to fade the cort enemas out slowly and fade the Rowasa back in at some point soon, as my GI doesn't want me on the cort enemas long term. I feel like anything is better than being on more prednisone for any longer than absolutely necessary, but that's just me. Good luck!
Posted 10/24/2012 10:28 AM (GMT 0)
Hi PamSmith
Thanks for following up with me. I never know how these posts work so I'm scrolling all the way down to find my posts each time. Need to get with the program lol.
Well, the bleeding finally stopped after my GI changed my meds from Pentasa to Asacol but before that, I bled for a month and a half straight but my blood tests showed nothing wrong at that time. My GI was going to consider Remicade as the next step, but then I had a colonoscopy done and they found cancer so I'm scheduled for surgery in 2 weeks. Things really took a drastic turn. I was bleeding again recently so my surgeon gave me rectal enemas called Predonema (steroid enemas made out of Prednisolone). This took like 3 weeks to kick in and now from about a week ago I was finally able to get in remission.
Has your bleeding stopped?? Have you seen your GI about it since?? Hope you're doing ok....I see other people who had some good advice.
Posted 11/6/2012 7:37 PM (GMT 0)
penny471,

Sorry to hear about cancer. I hope yor surgery goes well and everything works out for you. Is it ralated to colitis? I see that you have been dianosed only in 2008. so assuming you had a colonoscopy then. They did not find anything in 2008?

I saw my GI and he wanted to start Remicade too but I am not readyfor that. I am now at 10 mg prednisone, 12 Asacol and cortifoam at night. Blood is still there. but it's just 4 days so hoping it will stop.

Keep us posted about your surgery.
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