When to go on steroids

Hey guys

I've enjoyed a remission of about 20 months, but for the last 3 months I have been flaring It didn't start off too badly, just colon pain but not many bms, but for the last month I'm up to 8-10 bloody bms per day/night.

I'm exhausted by this point, have lost a lot of weight and am unable to eat at times. I'm on full dose or oral Octasa (for 2 months), and have taken suppositories and mesalamine enemas for the last 3 weeks.. my symptoms have not fully improved. The left side is better but I have pancolitis, and my right side has been sore and is my biggest concern.

I'm reluctant due to the side effects, but I think it's time for steroids. Am I giving in too quickly? Should I try something else first? Just to note, the last time I took steroids the flare was very nasty, at 20+ bms per day, and vomiting. It's been 2 years since I have taken them, also I have chosen not to take azathioprine.

I want to start this new year healthy! Happy New year!!

Post Edited (ICantTrustMyGut) : 1/1/2018 6:13:29 AM (GMT-7)

Octasa = 6 x 800mg
Asacol supps 500mg 1/day
Pentasa enema 1g 1/day

8-10 bloody bms a day is definitely time for the pred. I'd call that severe inflammation and that justifies oral steroids (mild or slightly moderate inflammation can sometimes avoid the dreaded pred).

Although you might need an escalation to stronger meds in tandem to get results. At least when I flared like that I needed stronger classes of meds. In your case consider immumomodualtors like imuran/azathioprine or 6MP. Or consider biologics like remicade/humira.

Maybe you could try uceris instead of prednisone, but I agree with iPoop, things sound pretty serious, and considering you have pancolitis, better to do something sooner than later. You could try steroid enemas, but it sounds like you're concerned about the upper parts, and no enema is going to help with that area.

I also agree with iPoop, that going on steroids, whether it's uceris or pred, will likely necessitate stronger maintenance medication. The best thing you can do is find a IBD center with a doctor you trust & work together to find options you're comfortable with.

quincy said...
Explain not improved fully....

Absolutely get on 4g enemas...

q

The left side has improved, there is virtually no pain there, the enemas have soothed it. However, my right side is still tender/sore. I'm in the UK (nhs) I don't have access to a 4g enema.

As you have pancolitis, steroid enemas would only treat 1/2 of the problem at most. Steroid enemas are 90 percent topical and 10 percent systematic.

Clipper/uceris/entocort EC is a delayed-release steroid pill that is 90 percent topical and 10 percent systematic. Pred is 100 percent systematic. It's the systematic bit that causes crazy side effects. Although clipper/uceris is meant for mild/moderate inflammation and you have severe. Clipper/uceris isn't likely strong enough for you... you could try it but i wouldn't expect it to be enough...

To clarify further, steroid enemas treat from rectum to, at most, the Splenic Flexure (where your large intestine bends from left side to horizontal across your belly). Sometimes enemas can help pancolitis patients (as our most severe inflammation is always within the rectum/sigmoid area). However, if you are flaring severely everywhere, which it sounds like you are, then an enema would only reach roughly 1/2 way up your large intestine. Steroid enemas are about 5mgs in dosage and usually just one per day (sometimes two).

Newer delayed-release Clipper/uceris/entocort EC (budesonide-steroids) are fixed sized (usually 9mgs), very low dosage pills and not nearly as flexible for our flare treatment as a consequence thereof. You get one pill per day, never multiples, never halves, etc.

Prednisone dosages can be tailored to whatever you need to respond: highly variable doses, half-pills, and can be high doses (20mgs, 40mgs, 60mgs day orally). They deliver a knockout punch, comparatively, and are the strongest of the bunch.

Spring said...
I have moderate pancolitis. Uceris does nothing for a more severe flare for me.

just curious there Spring > have these two things been of any benefit & how long have you been using them ? > Aroga, Purrium