need advice on prednisone dose & immediate next steps

Looking for your advice on pred dosage and immediate next steps:

Severe flare started 3 wks ago. Doctor have me pred to hit it hard (or so I thought), starting with 60 mg/day of Pred and cortenemas. Tapered back to 50 and then 40 - stayed at each for about a week.

Results so far: some improvement but it's not consistent. Much less cramping but still bleeding (seems like a lot, but how much is too much?). Cortenemas calm distal area (as far as it reaches). Early morning is worst bleeding. This is familiar, as I managed this for 9 months during last flare.

Can you help me with these questions:

1. What should I expect to see now, after a few weeks, if Pred is indeed helping at these doses? Reduced or less bleeding?

2. Should I continue Pred and hope it'll have a cumulative effect? Does it work that way? If not, I should probably just taper off, right?

3. Should I ask for a high dose of IV steroids or increased Pred dose to hit it harder? (Pred didn't stop bleeding in my last flare, but it did calm it down. Needed remicade to make it stop.)

4. Should I do a colonoscopy to see how much of colon is inflamed, etc? I was waiting to see first if the pred would work.

Entyvio is the only option left for drugs. I'm allergic to everything else. I'd appreciate your advice on the above or anything else, as I'm very discouraged. Thanks.

Do you have a previous pred history? The more your colon is inflamed the longer it will take to heal. I don't see the point of a colonoscopy because you already know that you aren't doing well.

Pred can become less effective the more you use it but there is no way to determine if that is happening or not accept for waiting to see. Personally, I think people should stay on 40mgs of pred until they are in complete remission and then taper off, unless the pred is not working at all or can't bring you to remission. If it can't bring you to remission at 40mgs then it's not going to work any better while tapering, assuming you were on 40mgs long enough in the first place. Far too many people taper too quickly and then wind up having to up the dose back up again and again and again, leaving you on pred far longer than if you had just stayed on the 40mgs long enough in the first place and then tapered back. The more the colon is damaged the longer it will take any med to heal it, including prednisone. Good luck.

Dr says if bleeding doesn't subside, may have to be hospitalized. (Have never been in hospital for UC flare)

Under what conditions would you see that as a reasonable next step?

Major symptom is bleeding (& urge to expel it several times a day) & a little cramping. Otherwise functional.

Trying to eat: bone broth, liquid protein, rice, eggs. Have lost about ~10lbs in past 3 wks since flare started. So that may be concern.

I'm doing 40 mg of Pred, cortenemas.

If you are getting anemic or dehydrated you should go to the hospital. Otherwise, it's usually a waste of time.

Thanks for your replies. You all have had so much experience with this... Definitely resisting hospital as next step. Trying to stay well hydrated. Could get fluids at infusion clinic if needed. Doesn't seem to be any sign of infection in labs or fever. Will try to hold steady.

I don't know how common this is, and at the risk of stating what may be obvious: my colon seems to be more still (no spasms & less blood to expel) when I eat nothing and drink little. Not a long term solution. Just an observation.... Is that what they mean by bowel rest & can it help quiet a flare along with the Pred?

i was first diagnosed in june of this year, i wasnt even eaten what youre trying to eat. lost 30 pounds in three weeks and spent a week in the hospital. if it was me, id go to the hospital while it's still not terrible. because it could possibly get way worse then you end up really regretting it. i was put on 60 mg in the hospital and then started tapering off at the beginning of august. i finally got completely off aug 23. between the prednisone and remicade, i was a night and day difference. my bleeding went away when i was still on 60 mg.

Hey Content, sorry I'm slow to reply. I'm on day two at half the dose of pain meds I was on. It's a process to get through, for sure.

I'm sorry to hear you're still having a rough go of it. Here are my thoughts:

-On prednisone doseage: I would think anywhere at 40 mg or above would either make a difference or not. I am not sure if I've ever been at 60 mg, 40 mg sounds like the more familiar dose. I wouldn't weigh my opinion heavily on this though.

-Regarding the enemas you're doing: Are those ones that you're supposed to move around and try to get further up in you? When I've done enemas, I start on my left side first, then move to a position where it should gravitate towards the middle of the colon more, then onto my right side. Just an idea to get it further in possibly. I'm not weighing my advice heavily here either as it's been a while since I've done enemas.

I'll try to answer the questions now:
1. What should I expect to see now, after a few weeks, if Pred is indeed helping at these doses? Reduced or less bleeding?

-I feel like this is too subjective to answer, as everyone is different. I think you'll intuitively know if it is helping or not, and be able to notice the subtle differences. It's obviously not hitting a home run regarding your treatment, but if there is less bleeding I'd say that is a good start. I wouldn't necessarily expect elimination of bleeding that soon, as it's usually given to calm things down enough for another medicine to kick in... and that one ends up healing things up more.

2. Should I continue Pred and hope it'll have a cumulative effect? Does it work that way? If not, I should probably just taper off, right?

-I wouldn't taper off until you have a good plan for yourself; a plan that your doctor is on board with. I've resisted Remicade for years when my GI doctor wanted me to go on it, so I understand if you are reluctant. But, if you have options I would say now is the time to try them. You know your history well; you need to judge if you think there's hope of getting out of the flare without maintenance meds or not. If it seems very unlikely then you have to do what you can for yourself.

3. Should I ask for a high dose of IV steroids or increased Pred dose to hit it harder? (Pred didn't stop bleeding in my last flare, but it did calm it down. Needed remicade to make it stop.)

-Interesting question that I don't know the answer to. I've never gone on IV steroids, so I don't have the experience to base an answer on. In theory though, if it could do the trick you'd think it was worth a shot. But, it again comes down to what your longer-term plan is.

4. Should I do a colonoscopy to see how much of colon is inflamed, etc? I was waiting to see first if the pred would work.

-Usually if I flared and we hadn't taken a look in a while we would do so. It gives you a baseline from which to know if the treatments you try next are actually working. We did this during my last flare, before and after I went on Remicade.


For what it is worth, if you can consider things to be grateful for it could help if even just slightly. My wife and I both have lower thresholds with our bodies in terms of when they start not doing what we want them to. We've both had to live differently than we wanted to in our lives because of this. But, that's just our reality. It's really hard to consider living a "normal" life without any health issues. It's better to just work within your reality, and find experiences that bring you peaceful or happy feelings.

None of that is to take away from the struggle you're facing though; my healing thoughts are with you.

Thanks for your thoughts on all of the above. Pred not working. My symptoms got a lot worse & I got a lot weaker. Doing all I can to hang in there. (And looking at starting Entyvio ASAP, despite concerns.)

Was very comforted in hearing about your approach to trying to work while flaring. That's exactly what I did - had nothing all day til I got home at night. Had to get up > 2 hrs before leaving for work to empty out, etc... We have this amazing capacity to adapt with strength of will. I did it for many months for last flare & again tried the past month. Not healthy but it worked.... Otherwise can't leave the house.

"If nothing else, they can monitor your bleeding, fluids, and nutrition closely"


I would certainly trust them to monitor my fluids and blood loss, but not so sure I'd want someone in the ER helping out with my nutritional needs

Reading through this, I'm a first time poster, have yet to offer all the meds i'm on at the moment, but I'm going through something extremely similar to you. I'm 42 years old, going through my first flare, I'm in the hospital now because 60 MG's of oral prednisone hasn't worked(in fact, the bleeding has gotten worse since I started 17 days ago).

I find it so perplexing that Prednisone isn't doing it's job, just like in your situation. I almost feel like I might have either waited too long to start taking it, or I'm not digesting it properly, but no fun at all. Feel like I'm at a point where my gut is rejecting everything, and I'm 2 days away from going in a different direction(haven't tried any biologics yet).

Anyway, I'm interested to know how you are doing now...

Hey Cprof -

glad you are doing better. My only advice would be to get away from all the gums and "natural" flavors in the orgain stuff. You might want to take a look at this:

chriskresser.com/harmful-or-harmless-guar-gum-locust-bean-gum-and-more/

I would try and duplicate without all the additives. Shouldn't be too hard to replace the protiens. And yes, as soon as you can get on 100% real food the better.

Are you making your own broth ?