Prednisone dosing question.

Rusty, I can't say that it will make a difference or not but it's not uncommon for folks to split the dose like this for a variety of reasons. If you are only taking the antispasmodic at bedtime you may not be getting enough in your system to give you some relief. I don't remember how your script is written, you may want to look at the directions again. Pred should start helping the blood.

Take care.

I have split my pred dose in the past, but between breakfast and lunch, not end of the day because I would never sleep! I can’t remember, have you tried steroid enemas? Those are so good at zapping tenesmus for me and might be just what you need to get some actual sleep so you can heal. I also think you should eat you biggest meal in the morning and get smaller as the day goes on. That should help with night time urgency.

Hi,

I'm currently taking 40mg of pred right now, along with steroid enemas at night before bed. (Currently trying to get in remission on remicade. Dosing 5mg per kilogram every 4 weeks. Not working and fighting with insurance to raise the dosage.) As some of the others mentioned, I can't take pred later in the day because it gives me terrible insomnia.

What I've found is it generally takes me about 7-14 days for the high dose of pred to heal. (Depending on how bad the inflammation is.) I'm about 10 days in on 40mg and just now starting to get some relief. So i'd say give the pred a little more time. Take all at once first thing, and then use the steroid enema at night. (if possible)

I then plan on weening every 10-14 days, 5mg at a time. I tend to wanna rush the ween and end up doing the pred yoyo and being on it way longer then if I was a little more patient.

Hope you feel better!

Thanks CC.

I had some initial signs of improvement but then nothing.

I’ve failed humira, entyvio, and simponi. Getting tired..

Haven’t tried xeljans or stelara yet, but considering surgery. Been 10 years and I’ve only had a little over a year once of remission.

Sara14 said...
Feeling any better today, Rusty?

First off. Thank you so much. EVERYONE. I can’t tell you how thankful I am for this forum.
I can’t imagine how “lonely” this UC would feel without this forum.
It’s pretty lonely and depressing at times WITH this forum! Lol

Friends (and I am so blessed with several great ones) can sympathize. But no way can anyone truly know what it’s like to walk a mile In These shoes unless you HAVE UC.

It’s can feel a little like Job in the Bible at times when he was really miserable.

Anyway.

So. Yes. I split my dosage yesterday. I took Xeljanz 10 mg and prednisone 20 mg at 7:45 am and again, same thing, at 7:45 pm.

Yesterday was my third day on the 40 mg dose of prednisone.

It definitely had a positive effect. Splitting up the dosage. Thank God!
I was shocked I was able to fall asleep normally. I’m guessing that has to do with the fact that I haven’t slept well for about a week or maybe longer.

I still woke up several times ( I think it was 3 times) in the night with the cramping, then the slow butt clinch walk to the toilet, feeling like if I walk faster I might poop my underwear, then get to the toilet, then the little bit of D with cramping, then the mucus wipe, then looking down in the bowl after multiple flushes during the little bit of diarrhea, then at the end seeing some small pieces of red and brown way down there. But all These things…”better” than the night before. Still a ways to go. But not as much blood on the toilet paper last night, and all the other things I just described “slightly better”. I’m starting to get my hopes up that I might actually be HEALING! Can it be? Lol.

Still sore this morning. Lower abdominal area. Feels like I did 20 sit ups last night before bed.

I’ll keep posting updates. Someday someone might find this thread and be encouraged a little by my awful recent journey. Tenemus totally an awful experience!

Thanks again to all for your encouragement and ideas and comments.

Post Edited (Rusty Barr) : 9/17/2021 8:30:15 AM (GMT-6)

CCinPA-

The rather concerning detail is that yes, I had my levels checked and I’m in “therapeutic range”.

I had an initial response but this has been my track record. No antibodies but the medicine just stops working. I’ve heard both, that if your in therapeutic range then doubling won’t do anything, and then in some cases maybe it will?

I’m going to see some “guru” Gastro out of the University of Miami this next Tuesday to review my situation. Honestly can’t imagine what else she may know, but I’m willing to hear what she has to say.

I guess if this doesn’t work then it’s either xeljanz, stelara or surgery.

Well. I have discovered I am pretty sure I am allergic to the generic for Bentyl.

The drug is Dicyclomine 20 mg.

Actually makes the tenemus worse for me. Especially the cramping.

I “Sherlock’d it out” after taking the drug at different times the past couple of days.

Crazy it took me about a week to figure this out.

Argh.

Beyond frustrating.

.

Post Edited (Rusty Barr) : 9/18/2021 6:14:09 PM (GMT-6)

quincy said...
That's shocking since it's supposed to help it.... ugh, sucks.
There are others you could try?

q

Hi. Maybe it’s an interaction between it and Xeljanz. I don’t know. But I’ve experimented the last three days, with me being the test animal, lol, and it definitely makes things worse right now for me with where I am at. I am positively sure. Direct correlation.

So. I’m just going to stick with the Xeljanz 10/10 and the prednisone 20/20 each day for a few days. And see what happens.

I’m exhausted with this. I’ve been really struggling since 9/1. Sigh.

.