To be frank, your apprehensions to try stronger medications are making your UC journey and response to this flare much, much harder to treat than is otherwise necessary. You're apprehensive to try prednisone. You're apprehensive to try biologics. I understand you're trying to be smart and not take more medications, or stronger medications that is otherwise necessary. However, I believe you're dealing with disease-progression, in your case, and you're only delaying the inevitable (and while you delay your UC only spreads in extent and severity and therefore becomes harder to treat). I believe you are a bit in denial that your UC has gotten worse, and expect the same thing to work before to work now (every flare is different). You need to get serious (stop kicking the can down the road), and hit your UC hard and recover from this flare.
Budesonide (oral budesonide, steroid rectal-foams or enemas) are great for mild to slightly moderate inflammation, with severe inflammation budesonide will NOT help you. Prednisone is a necessity with severe inflammation (even though it is a deal with the devil, expect side effects). No that is NOT longterm usage of pred (longterm is a year or more of continual usage).
There's nothing at all extreme or outrageous about
considering biologics after seeing severe inflammation during a colonoscopy. Standard clinical protocol is to recommend biologics for severe inflammation, so your doctor is following the rules. The mental hurdle is always the hardest to jump, everyone is initially scared to consider new classes of UC medications and we all worry about
potential side effects of them. I was the same. I've been on remicade since 2012, have had zero side effects, and was in a clinical-remission due to it. All side effects are in the rare category, less than 1% of patients experience them.
Your case sounds like a pretty clear case of an increase in disease severity. You were initially well controlled on apriso (mildest of the mesalamines) and responded quickly to Budesonide (good for mild flares) during a series of flares within 3 years. Now you're not responding to Budesonide and had a colonoscopy stating severe inflammation. I think an escalation to stronger medications as a maintenance (a biologic or immunomodulator) is likely within your future. You've flared 3 times in 3 years, and that just screams of an under-managed, under-medicated case. A remission should last 2, 3, 5, 8 years or longer in well-controlled cases.
1.) Plan on being on prednisone, that's unavoidable. At least 20mgs, better still would be 40mgs. A minimum of 2-months on pred for best results.
2.) You can try prednisone for the course mentioned and see if you can successfully taper and return to just the mesalamines (maintenance meds will be 4.8 grams orally and 4.0 grams via retention-enema: rowasa). It's possible this would help, but I am skeptical you can get off of the pred and stay on just these medications. If you see flare symptoms return as you taper down then that's a HUGE red, waving flag telling you it isn't enough on your maintenance meds.
3.) You can go on an immunomodulator (azathioprine/imuran/6mp) now along with pred and your current mesalamines, wait 3-months for them to work, and get off of the pred and see if it works. I'd give this a higher odds of success then #2. The immunomodulators have fallen out of favor with most gasteroenteroligists within the last 5-years or so (due to small less than 1%, but cumulative lymphoma risks over a lifetime as a maintenance med for UC). They're generic medications, inexpensive, but require routine blood monitoring on a 3-month rotation. If you're just against biologics then consider this as an alternative method to use stronger medications and tame this. I'd put this at pretty good odds of helping. They're still effective meds, and a lot cheaper than biologics (or even mesalamines).
4.) You can go on a biologic now. Entyvio takes 10-12 weeks to work. Depends on your insurance policy wording, but often you must fail at least one tnf-alpha-blocker (remicade/humira) before entyvio can be approved (talk to them and ask). Remicade/humira will work in 4-6 weeks, much faster working. These are effective meds and have good odds of helping you. Just make sure to check out the patient co-pay assistance programs, expensive meds and these help tremendously: /www.entyviohcp.com/access-support
A lot of gasteroenterologists are advocates for the top-down approach, trying the stronger medications earlier and giving a patient a better quality of life, and better control UC over the long term with them. In the end, it is what keeps you well controlled over the long term, enables you to forget about
UC, live and enjoy yourself. Everyone flares eventually regardless of treatment taken, however, my flares are now very mild since being on biologics. Prior to biologics I had severe flares (25+ bms a day, near incontinence, frequent accidents and pain) and now my flares are 3 bms a day, with slight signs of blood, and slight increase in urgency (a cakewalk in comparison). The idea for us is to make the remissions as long as is possible, the flares as infrequent and mild as is possible with a strong and effective maintenance treatment.
I'd wager pred, and a biologic is in your future. Whether you arrive at that conclusion today or in 6-months of trying everything else is another matter. Sometimes we need to exhaust all other options first to jump that hurdle. I read a lot of UC stories here, that's my case and it sounds like your on a similar path to me (of course I could be wholly wrong) ;-)
Regardless of whether you need a biologic or not, here's a good read on the risks versus benefits of biologics/immunomodulars by the Crohn's and Colitis Foundation of America that's highly recommended. Watch/read, it's informative. Everyone is a bit apprehensive about
these medications and I think the risks versus benefit statistics are good to find out what are the odds of side effects that might otherwise scare us (they're much, much lower then you'd expect). Nothing is without risk, and knowing what you're up against is key:
Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasaA screenwriter with Crohn's disease came up with that iconic scene in the movie Aliens (1986) where an alien bursts out of a guy's abdomen. I've musingly wondered whether my UC pains meant that ...
Post Edited (iPoop) : 7/30/2018 9:22:57 AM (GMT-6)