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Predisone not working?

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Ulcerative Colitis
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Posted 12/1/2013 3:08 PM (GMT 0)
Been on pred for 2 1/2 months started tapering.. Got down to 10 mg and had to go back up to 40 today because I was literally miserable yesterday several bowel movements then had a fever. Just don't think I'm responding to pred.. Any suggestions I'm new to all of this as well was just diagnosed in July '13. Could use any advice.
Posted 12/1/2013 4:20 PM (GMT 0)
i was diagnosed with UC in feb of 13 i didn't respond to pred i was 40-50 bm a day then went on iv steroid work aliittle better 10-15 bm a day then remicade didn't work either had tons of polyps in colon decided to have 1st surgery in april 2013 removal of large int and part of rectum best move i could of made i think just had 2nd surge 3 weeks ago getting better but i hated the pred i called it the devil drug couldn't sleep hungry all the time etc maybe c if u can go on remicade surg another option but last resort for me it was a no brainer dr said i was a very severe case of UC how fast it came on and all the ulcers good luck
Posted 12/1/2013 4:22 PM (GMT 0)
Have you tried other medications like 5ASAs, Remicade, Humira, immune supression?
Posted 12/1/2013 5:52 PM (GMT 0)
I'm on balsalazide disodium 3 pills 3 times a day, the pred,
Hydrocort enema, next step is 6mp cause doesn't seem like I'm responding to any of this. Have also tried lialda, rowasa enema, and uceris. None of those helped me. I don't really want to take immune suppressant drugs just the thought kinda scares me.. But I don't think I have a whole lot of options.
Posted 12/1/2013 7:00 PM (GMT 0)
Were you diagnosed 2 1/2 months ago? If so, that's a lot of treatments to have in such a short time. Have you tried any probiotics, supplements, or dietary changes? Some of these can help considerably in some people. Unfortunately, everyone is different and what works on one doesn't work on someone else.
Posted 12/1/2013 7:49 PM (GMT 0)
5 months ago I've tried several different diets.. I try to mainly eat gluten free and no dairy at all. I take a probiotic 3 times a day as well. Supplements I haven't tried. Not sure what will actually help or hurt.
Posted 12/1/2013 8:04 PM (GMT 0)
Hi,

Ive been diagnosed with UC in Jan13

Since then, i have taken several meds, and prednisone kind of worked for me, but the side effects were awefull. My doc didnt say nothing about a specific diet so as went allong with the prednisone treatment i was always hungry and i craved sugar all the time. I ve eaten a lot of crap at that time, and as soon as pred treatment stop, i immediately got worse again.

After that i used Salofalk Enema, and it worked quite well. I flared a couple months ago and doc started me on Pentasa Enema and Salofalk ( Oral ). Seems to be working along with the new diet (SCD ) i started.

My advice, (wich is as good as any) is that you try adequate diet, and maybe ask for other meds. As i said, Enemas ( Salofalk or Pentasa ) seem to work for me.
Posted 12/1/2013 8:07 PM (GMT 0)
Prednisone didn't work for me, in fact it made me quite a bit worse. Doc had no idea why. Did it work at the higher doses then stopped just when you tapered?
Posted 12/1/2013 8:14 PM (GMT 0)
about May13 i think.. from then on i was kept only on Salofalk ( Oral ) and i immediately got worse. Than i used the Mesalazine Enemas and got way better. i honestly assumed i was done with UC!

A couple months ago i stoped treatment because i stupidly thought that i didnt need it anymore. Of course, a couple weeks later i got worse.
I was trying an aproximate Macrobiot diet at the time, wich may or not have helped to keep me from flaring.
As i got really worse last couple of weeks, i changed diet to SCD and went to the Doc for more meds.
Until now ( 2 days ) it seems to be working becausa the bleeding stoped and i feel overall better. the excessive BM and D still apply though.
Posted 12/1/2013 8:16 PM (GMT 0)
Sorry i kinda meddled in Mlj93 s post :D
Posted 12/1/2013 8:17 PM (GMT 0)
Which probiotic do you take?
Posted 12/1/2013 10:05 PM (GMT 0)
Yeah prednisone sucks side effect wise .. And It has never stopped my bleeding. But it keeps my colitis slightly under control I guess since I got down to 10 mg and got a lot worse. I take a raw probiotic I think it's called garden of life for women. Maybe I should try something else. I'm open for any new ideas I just want to feel better.
Posted 12/1/2013 10:06 PM (GMT 0)
Laughing duck what do you take for your uc?
Posted 12/1/2013 11:01 PM (GMT 0)
Sorry, forgot to include my signature! Diet had been my best bet but lately isn't working as well.
Posted 12/1/2013 11:09 PM (GMT 0)
I think diet is what is best for me some days.. Other days doesn't even seem like it matters at the slightest.
Posted 12/1/2013 11:10 PM (GMT 0)
My situation was similar. Prednisone worked at first but when I tapered the effect wore off completely. In my opinion, you should go forward with 6MP ASAP -- don't be scared. Lots of people use 6MP longterm very happily and safely. However, it takes three months to *start* working and you'll need to stay on pred for at least some of that time in order to maintain some quality of life... so don't dawdle. By the time I wrapped my mind around trying immunosuppressants I had been on pred for too long and I wasn't able to wait to see if 6MP would kick in for me.

Unfortunately some of us don't respond to 5ASAs or don't respond enough and we need to go to the bigger guns. It doesn't mean you aren't going to go into remission, but I'm a firm believer in not dragging your feet. I think people are scared of immunosuppressants in part because we see it as a signal of the severity of our illness ("If I need to take 6MP then I must be REALLY sick") but whether you take the drugs or not doesn't change the fact that you are sick.
Posted 12/1/2013 11:11 PM (GMT 0)
I'm kinda thinking my latest flare was due to stress and my body fighting off a cold. My diet was spotless for 3 months. Now I am pissed off and eating a baked potato for dinner, first starch in 3 months! Just wanted to feel full.
Posted 12/1/2013 11:51 PM (GMT 0)
Yeah I have a Dr's apt in a couple weeks going to start the 6 mp of all my blood work or whatever comes back normal for it. I'm tired of feeling like poo. Just ready to have some relief. I pretty much feel exhausted 24/7 and trying to work a full time job it kinda sucks but I know there are people that have it far more worse. Right there with you laughing duck eating a sweet potato.. Lol I haven't ate since this morning. Basically afraid to eat.
Posted 12/2/2013 1:54 AM (GMT 0)
Omg woofwoof that's terrible I'm sorry :( I wish surgery would just make it all go away forever.. But it doesn't? Blah that sucks!
Posted 12/2/2013 3:38 AM (GMT 0)
J-pouch surgery has a 97% satisfaction rate. Unfortunately woofwoof is in the 3% that is unsatisfied, and he refuses to explore other options. I'm in the 97% that is very satisfied, I eat, I work, I do what I want. There are many other happy people on the board who have had surgery. I didn't mention it earlier in the thread because you weren't asking about surgery.
Posted 12/2/2013 11:28 AM (GMT 0)
If I keep trying stuff and nothing is working I would definitely go for surgery.. Do you have options once you have surgery? My dad has crohns and colitis and had j pouch surgery but he seems to be pretty miserable still but I think it's the crohns not colitis that is affecting him
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