Frustrated - Nothing is working except prednisone!

I wonder how many of these frustrated post start 5am. Probably a lot. I have been diagnosed with UC for about 5 years after having a colonoscopy done. I have taken Lialda, Asacol, MP5, and now Colozal and all (except for MP5) have made my stomach worse. I have seen 2 GI's and these guys are no help and at $170 per visit I have essentially told them what to prescribe me as they are guessing themselves. Prednisone works. I take it at a high dose (80MG) for 2 days then taper off of it and it usually turns around my UC. But my new doctor said I need to be on a maintenance drug to keep any unseen inflammation in check while I'm in remission. But when I take these maintenance drugs they send my stomach in to turmoil. I am currently taking Colossal and using prednisone to keep my bad stomach in check - barely. I've been on Colozal for about 2 weeks but have seen no signs of improvement. Does it take a while for this stuff to work?

The other problem I have is, prior to this I had been on prednisone for a bit, about a month to stop a flair after taking antibiotics. (Caution - Take a high probiotic when taking antibiotics as it will kill the flora in your stomach and could send you into a bad flair.) In any case - I was just finishing up my prednisone taper (stomach was feeling much better and almost back to normal) when I finally got my appointment with my new GI one month later. He put me on aminosalicylates but I had to inform that me and my wife are trying to have a baby and it lowers sperm count. So I suggested Colozal as it doesn't have the same side effect and people have said it work for them when Lialda and Asacol didn't. Now this stuff (Colozal) doesn't work either and I have now been on prednisone for almost 2 months! I hate this prednisone crap but it's the only thing that work and now I'll have to taper of of it and be on to for another 2 weeks!

Anyone else run the gamut of drugs where nothing has worked? Or am I just starting and this is what all of you have already gone thought. Some foresight would be helpful. I am new to this blog but have been reading this site for a few years and my heart goes out to the many of the heartfelt post i've read and have used much of the good advice I have read here to manage my UC.

Totally Frustrated!

I can't imagine having this disease being young and/or in High School. I am 30+ when this started and as an adult i'm at least better equipped to deal with this ugly disease but in high school when your trying to figure out who you are and where you belong in this world - I can't even imagine how hard that must be. My heart goes out to you.

I don't want to be a baby about it. I'm tough - just would appreciate any thoughts.

Thanks in advance! Keep battling!

SA

Soy - My symptoms are the usual, bloating, gas, frequency, 15+ BM a day, blood, diarrhea. I just had hoped that I'd see some sort of relief by now (9 Colozal pills a day and no time release!) so at least, once I get off of the prednisone I will have a maintenance drug that will help me when my stomach is normal.

Hi and welcome to the forum. "Totally Frustrated!" Unfortunately that's the UC experience for many of us, so we totally get and, sadly, also experience the same frustrations ourselves. We try many different medications, doses, and alternative treatments and yet still struggle. Lot's of trial-and-error with treating uc.

What's MP5? Did you, by chance, mean 6MP an immunomodulator medication for uc?

" I've been on Colozal for about 2 weeks but have seen no signs of improvement. Does it take a while for this stuff to work? " Generally 2-4 weeks for the biggest response, and then slow and steady improvements thereafter.

Generally, you want to max out the anti-inflammatory medications (also known as aminosalicylates/mesalamine/5ASA) in both oral and rectal routes for the best possible results. For colazal that's a total of 9 pills (750mgs each x 9 = total of 6,750 milligrams a day) and also a rowasa enema with another 4,000 milligrams a day. Should that not be enough, then immunomodulators like Imuran or 6mp are added. Should that not be enough then biologics are added (remicade, humira, entyvio, simponi, etc).

" He put me on aminosalicylates but I had to inform that me and my wife are trying to have a baby and it lowers sperm count. So I suggested Colozal as it doesn't have the same side effect " Colazal is a more complex molecule that breaks down within your gut by bacteria into mesalamine and a byproduct. Lialda and asacol both contain mesalamine, so the same potential side effects apply to colazal as well. Male fertility isn't well studied with UC as a whole. I wouldn't treat reduced sperm count as a guarantee, rather just a slight risk.

"Nothing is working except prednisone!" Steroids are one of the most effective drugs for treating UC but unfortunately are only for short-term, rescue usage.

15 bms a day is a pretty severe flare. If you're not responding to 80 mgs of prednisone then I'd wonder if you have c diff. Have you had a stool test to check for pathogenic causes to your worsened symptoms? Bugs like c diff look exactly like a ulcerative colitis flare but only respond to antibiotics.

Have you had a colonoscopy, flexible-sigmoidoscopy to answer how severe and how far? Alternatively, a reactive protein (crp) blood test or a fecal calprotectin (fcp) stool test can assess your body levels of inflammation. If you're real bad then a biologic might be best and quickest for recovery.

Whats your 6MP dose? 75-100 mgs a day us typical, but it is a weight dosed drug, and your bloodwork limits what they can safely give you.

Steve_A said...
He put me on aminosalicylates but I had to inform that me and my wife are trying to have a baby and it lowers sperm count.

I think you referring to Sulfasalazine. I don't think you'll find many people with UC taking medication unless it's their only option due to cost.

I had three kids on high doses of Pentasa and Canasa. Rest easy.