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Best next option after Prednisone?

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Ulcerative Colitis
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Posted 12/28/2023 4:34 PM (GMT 0)
Hi all,

Looking for some advice please!

I was first diagnosed with UC in 2013 and after a severe flare and time in hsopital, was put on Imuran from 2013 to 2019, after which weened myself off it and have been mostly medication free since 2020.

That worked great for a while, with an annual small flare which I would get under control with a low dose of Prednisone, but I seem to be developed a resistance to the medication.

I had a recent flare start in late October much stronge than usual, spent 6 weeks trying to get 5-ASA to work, which it hasn't. Now put Prednisone up to 35mg/Day a few days ago and have not got any great response so far.

Obviously ruled out all types of other causes such as infections etc...

For personal reasons, I need to get my flare normalised as fast as possible as have some key events coming up in my life early next year.

I don't want to go on higher doses of steroids as the 35mg is already knocking me about too much.

What do you all recommend as a the latest best solutions for:
> Long term maintenance medication
> Something that can be started quickly so I can taper off the Prednisone asap

Thank you smile
Posted 12/28/2023 8:21 PM (GMT 0)
If I were you right now, I would get on a biologic or jak inhibitor (3rd class of drugs). They can take time to work but you need to be on something. Having no response to oral prednisone is not a good sign and you don’t want the inflammation to worsen to the point of hospitalization. They will 100% put on you IV steroids in the hospital which suck but work amazingly well if you are in a bad flare. Obviously, the biologic needs to be prescribed and recommended by your Gi and insurance gets the say of which ones you can use. There are so many out now to pick from depending on if you want hospital infusions, injections or pills. I have step therapy in my state and had to fail certain ones before taking others. What does your GI think you should do? Has he recommended a biologic/jak inhibitor?
Posted 12/28/2023 8:40 PM (GMT 0)
Remicade+6mp.
Posted 12/29/2023 4:00 PM (GMT 0)
Hi...I'm curious re the 5ASA that you're trying to get to work? Have you heen on it...oral and rectal...for maintenance as well?

q
Posted 12/29/2023 4:25 PM (GMT 0)
Thanks for your quick feedback.

Just went to get a seocnd GI doctor today, and he suggested that if the Prednisone doesn't work in the next couple of days to then look at Remicade and Imuran.

He suggested that we could start Remicade pretty quickly and within the first two shots (think he said within 2 weeks), we would know if it is working or not as symptoms should improve - does that sound normal?

Regarding 5-ASA, worked my way up to the maximum doses:
> Pentasa Oral granules (4gm), but still pain in ascending colon
> Pentasa Suppositories fixed the distal colon
> Asacol 4gm enemas are ineffective with my descending colon.
> In addition trying Budesonide Foam which seems to work slightly better than the 5-ASA enema (but even the Foam isn't making things better, just slowing down the speed it is getting worse!).

Overall they might just be helping slow down the progression, but stool frequency and blood is increasing and form decreasing (nothing solid in a good month now!), so time for an intervention...
Posted 12/29/2023 5:57 PM (GMT 0)
RE "Asacol 4 gm enemas" not being effective to treat descending colon: enemas do not reach the descending colon. 5-ASA enemas can treat the sigmoid, but not higher up. Steroid enemas cannot reach the descending colon, but may afford some relief there via systemic effect if/when used for multiple months-- not a good idea! It seems from your sectional mentions (including ascending colon) that you need oral meds and/or biologics because you have pancolitis. Actually, you have played roulette and lost by abandoning former UC meds after achieving remission. Your gastroenterologist should have warned you about the known risk that poses for UCers! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 12/29/2023 6:31 PM (GMT 0)
Brad, Remicade is rarely approved by insurance anymore, instead they are approving Inflectra which is a biosimilar to Remicade. It's much cheaper & seems to be working well for most people. Both meds are infused, loading doses are 0,2 & 6 week intervals. You may or may not be able to tell much difference at first. While on Remicade I could tell a little bit of difference at 3 months. Over time we moved the infusions closer together & increased the dose.

Getting off prednisone needs to be your goal, the SE's of it long term are not good.

Was your gi aware you went off of your meds?
Posted 12/30/2023 4:55 AM (GMT 0)
Thanks both.

Good to know about the enemas, that would probably explain the lack of response (GI didn't mention this though).

Agree, I went rogue for a while. Wasn't seeing my GI regularly and let my diet / etc slip a bit at the same time.

Also agree with getting off Prednisone ASAP.

I'll look into Inflectra, although not sure it is available where I am based.

Post Edited (BradJ) : 12/29/2023 10:20:47 PM (GMT-8)

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