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To be or not to be on Humara, that is my question.

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Ulcerative Colitis
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Posted 9/17/2018 6:53 AM (GMT 0)
A little over a year ago I was diagnosed with UC. For the past year I've been taking Pantasa (1000mg, 4 x a day), have had to use Prednisone twice to calm my flair, and had to use Rowasa once every night for about 3 months during both my flares. I'm currently about two months into my socond flare. I'm off the steroids now but am still having to run to the bathroom about 5 times a day, the bleading stopped about a month ago and the number of BMs is down from 7-10/day. I'm still taking the Pantasa and Rowasa every day. My GI suggested that I might need to start concidering humara since my BMs are still urgent a be more frequent than usual.

Does anybody have any feedback, advice, suggestions, opinions about changing over to humara?

Things aren't going so bad for me right now so I'm not sure I want to switch drugs yet. If I switch to humara now I'm concerned that I will advance through the available drugs faster than I need to and end up needing surgery sooner then I would if I stuck it out longer on my current meds.
Posted 9/17/2018 1:18 PM (GMT 0)
the higher chances of surgery is not directly tied using up some concept of useful lifespan of drugs. Some research supports moving more quickly to biologics lowers lifetime risk of surgery.

if you are seeing slow and steady progress on the current meds, waiting could be more reasonable. The real question is how does the inflammation look - apart from symptoms. The colon cancer risk follows the inflammation.

good luck
Posted 9/17/2018 1:37 PM (GMT 0)
Everyone is different but in my case I waited too long not wanting to go on Humira and by the time I went on it was too late. My whole colon was ulcerated and surgery was the only choice. I wish I started the humira sooner, maybe it wouldn't have made a difference but I will never know. My whole colon was removed last December followed by two more surgeries. I now have a J pouch and for the first time in a long time living like a normal person.
You sound like you might be heading in for remission and seem to be a bit stable. I would stay with the current meds, but the second you start bleeding again or other symptoms start back up I would seriously consider going on a biological drug.
Posted 9/17/2018 1:43 PM (GMT 0)
The top-down approach is the trending therapy recommendation used by many gasteroenteroligists. Start with the stronger meds much, much earlier within the treatment process to extinguish and control UC before it spreads in extent and severity. That produces the best quality of life, controls it fast, and lets you move on while in a remission and forget about a UC. You could try small adjustments for the next 6-months and not be much, if any, further along in getting past this flare.

5 bms a day puts you at the high-end of a moderate flare, and the low-end of a severe flare. Humira is a perfectly reasonable recommendation with those symptoms. If you're feeling pretty good at 5-bms a day, then you're really forgetting what 1-bm a day is like, and how a remission would be a whole lot better quality of life through stronger treatments. Saying "well 5 bms a day is at least better than 7" is a trap, it's not the best you can do, you can do a whole lot better.

What good is saving a trump-card up your sleeve, if it is only a joker? You're best to try all of your treatment options and get into a remission. There's many biologics available, and many new treatments in development. You are not at the end of your rope, if you try Humira now smile
Posted 9/17/2018 1:51 PM (GMT 0)
I tried Humira but it didn't do anything for me. But I probably waited to long to start it. I had been on prednisone for 6 months which stopped working, I tried Imuran first which didn't help and then moved on to Humira. I took that for almost 3 months with no change so I had surgery. I just and step 2 of 3 last month. I've been dealing with flares for 17 years, I couldn't get in remission with the bigger drugs so my next step was surgery in order to have any quality of life. Best decision I have made. I wouldn't hold back trying Humira or even Entyvio (though that one takes longer to work), because if it gets to bad they may not help at all. Good luck.
Posted 9/17/2018 3:34 PM (GMT 0)
Thank you all for your advice and testimonials. I feel much better about things now.

I have another question now. Suppose I do start a biologic, is it possible that I may need to use Rowasa or oral Mesalamine from time to time while on the biologic? Or do you completely stop the Mesalamine after starting the biologic?
Posted 9/17/2018 3:57 PM (GMT 0)
The general idea is this. It initially takes a lot more medications to achieve a remission then it does to sustain it. First, achieve a remission with a throw everything at it approach. Only once you've achieved a sustained remission (often that means 2-months or more without prednisone and with remission symptoms) start reducing other medications, and whittling down to what you really need going forward as a maintenance treatment.

For me, I achieved a remission on remicade, 6mp, lialda, and rowasa. Once sustained, my doctor said quit Lialda cold-turkey, which I did. 6-months later, he said quit the rowasa cold-turkey (I chose to slowly taper instead). 6-months later, he said quit 6MP cold turkey. 6-months later, I flared mildly, and we added it all back :-/ There's always risk in reducing meds, you don't want to reduce too much or else you flare. He said I am only one of two patients that flared after removing 6mp. He usually gets patients down to just the biologic during maintenance phases (which would certainly be nice, no daily pills or nightly enemas).

Post Edited (iPoop) : 9/17/2018 10:00:00 AM (GMT-6)

Posted 9/17/2018 8:04 PM (GMT 0)
Just a note on my story -- I went on Entyvio just one year after diagnosis. I didn't want to, but my dr. convinced me that since my disease had been steroid dependent for that whole year, and I wasn't a candidate for the 6mp line of drugs (a non-metabolizer), it was best for me to jump onto a biologic rather than risk losing my colon. I resisted at first, but I'm really glad now that I did it. I've been in remission for a year now. I still take my Apriso (mesalamine) daily. I did try cutting it back to 2 a day rather than 4, and every other day, but it seemed like my urgency increased a bit, and my current dr. recommended I stay on it as a maintenance. I no longer use any rectal medications, though.

The other thing you need to consider is what long-term inflammation does to your cancer risk. Six months ago, I had several small polyps that were pre-cancerous. And that was after only a year and a half of uncontrolled inflammation from my UC. I'd had colonoscopies before my UC diagnosis because of diverticulitis and no polyps were ever found before, so I have to conclude that they were UC related. Thanfully, my last scope found only benign polyps, so I get to go a whole year before my next colonoscopy.

Biologics are scary at first, but if you are able to achieve remission on them, you'll be thanking your doctor for steering you in that direction.

::my $.02 worth opinion:: ;-D
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