HELP! Prednisone or Biologic?

Everyone will ask for a list of what you are currently on and the extent of your inflammation (proctitis, pan colitis, etc). You may be able to up dosages and do both oral and rectal meds depending what you are on. That being said, if budesonide does not work, prednisone is the next steroid option. Six weeks is not considered long-term, so you won't get the long-term effects (like bone density loss, etc). However, you will probably experience some of the short term effects like weight gain, moon face, insomnia, mood changes, etc. Not everyone experiences these or even all of these. I had weight gain and moon face because it made me want to eat everything, especially carbs. It made me feel arthritic at 40mg, but not at 20mg. Prednisone did not impact my sleep or mood.

Also, temporary prednisone is one of those options you need to exhaust before going on biologics if you want to try everything first. Plus, there are doctors do biologics first and then immunomodulators, and some who switch that order. My doctor and I chose the biologics first because of fewer side effects and less monitoring. Still ended up on both, though.

6 weeks is short term, but if you have severe inflammation you should start at least 40mg. The point of the steroid is rescue so don't be shy with it.

you might not sleet too well and you may get edgy. you are not going to get diabetes or osteoporosis in 6 weeks.

just stayed on apriso (chose apriso vs. asacol just for insurance purposes)

Many people here have found remission when they reinforce their mesalamines (apriso, asacol, etc.) with mesalamine enemas. They are very effective and enemas are the meds with the fewest side effects.

as101305:

Also, I didn't catch this before, you're on 4 pills/day of Apriso, which is fine if you're in remission, which you'e not. Apriso is for maintenance (says so on their website)
I think you should be on 4.8mg mesalamine to induce remission with the budesonide tablets.

I'd give the right mesalamine and the right budesonide with the right doses a shot before moving to hardcore drugs.. It's your body, not the well-intentioned but egregiously uninformed physician's.

I understand the reticence about the biologics, but I've had zero side effects on Entyvio. That's pretty slow acting though so if you have severe inflammation that might not be what is best for you.

Give the Asacol/Uceris combination a month to see if that does anything, Get a prescription for rectal meds too ... either mesalamine or steroid retention enemas. You might have to get insistent with your doc about the rectal meds ... some docs don't like to prescribe them for some reason, but even with pancolitis they really help. If after treating both orally & rectally you don't see improvement don't be afraid to go on a biologic. One thing to remember about the side effects... they are side effects from people in the drugs trials and most people who go on drug trials are already pretty sick. Not saying that there aren't side effects ... just trying to put the already low risk into perspective.

Please also consider that biologic's might not even work. They have no effect on my UC, even when including methotrextate and with both infusion and injection biologic's. Increasing treatments had no effect, i.e., going to every 2 weeks instead of every 4, or every 4 weeks instead of every 8. Prednisone is the only thing that will pull me out of a flare, and for me, I needed to stay on it for a year and sloooooowly taper. I could taper to 5mg but as soon as I tried to go lower, I would start to flare. I had to stay on 5mg for many months, then go to 4mg for a few months, then 2mg for a few months then 1mg for a few months until I could stop with no flare or return of flare. That was over 2 years ago and I am only on Lialda, 2 pills a day with somewhat normal bowels. No other mesamaline work well for me. Apriso will make me flare. Asacol kinda works, but I have to take 4 pills where Lialda works way better with only 2. All others including enema type have no positive effect for me. My UC was left side in a small area and I had a resection to remove a perf and my surgeon was great and saved me from getting a j-pouch. I had pleaded that if at all possible, no bag or j-pouch. I was willing to take the risk of recurrence, and it has returned, but at a level that I can live with and function almost normal. Also, one thing that works for me (not during a flare) is Metamucil. I take 2 tbls. late afternoon and drink lots of water and next morning I have BM's that clear my colon for the day. There is some urgency in the morning, but once I go, im good all day. My Doc doesnt think its a good idea but says if it has been working for me, continue. I need to stay on a restrictive diet and cant tolerate most veggies, fried food or spicy food, but can still go out and enjoy a steak, chicken or salmon and baked potato. It took me many years of trail and error to get to where I am, I hope you find what works for you. Best wishes

Post Edited (kelik22) : 7/28/2018 2:07:09 PM (GMT-6)

IntestinalWasps:

Thank you! Yeah, what I'm conflicted about is whether or not to try the prednisone (6 week taper 30, 20, 10) to get the flare under control and then just stay on asacol moving forward or don't do the predisone and just do entyvio. First I am going to try uceris + asacol but if that doesn't work then either of the two choices above are my next options.

I'd do the prednisone and 6 weeks is not very long. Also wondering why the doctor would not start you on 40 mg, as this is typical, not 30. Two weeks at each is kind of a weird taper. And why is she reluctant to give you pred when you have never even been on it? Sorry, but does she know what she is doing?

Sara14:

Yeah, I'm not really sure why she was saying to go straight to the biologic before even trying prednisone the only thing I can think of is that she knew I wasn't a big fan of going on prednisone but that was when faced with choosing between budesonide and prednisone, when given the option between a biologic and prednisone that's when I started to think well maybe I should just try the prednisone first. As far as the taper schedule I'm not really sure - she just said that she would start me at 30 because she thinks that would be fine. Originally she said 30 and then reduce by 5 mg every 2 weeks or something like that but then we came to start at 30 and then reduce by 10 every 2 weeks.

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 or /remicade.janssencarepathsavings.com/

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:

Webcast: programs.rmei.com/CCFA139VL/presentation/player.html

Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

You're welcome. It's important that everyone go prepared to his/her doctor's apt, knowing the full spectrum of UC treatments available to them and when they're appropriate to use. If you have all the available colors on your artist's palette, the right brushes and have a plan, then you might just be able to paint something beautiful like a remission. If you go better prepared and informed to your doctors appointment ready to discuss your own plan going forward then I'm happy!