Need advice on prednisone please!!

Please call his doctor for advice if he's feeling so unwell! Maybe he needs a higher dose of prednisone (60-80 mg) to stop this flare. I've had to before for bad flares. Good luck, and I hope he feels better soon, but please call his Dr.

Oh that's good they tested for C-diff. Why was he taking Flagyl?

With my first round of prednisone in 2015 it took almost a week to notice a difference in my symptoms. However when it worked my symptoms stopped as though someone had flipped a switch in my body. Your son may just need more time. Hope he gets some relief soon.

decaf4me said...
Okay, so maybe give it more time with the Flagyl and prednisone combo, like the Dr said to wait. Easier said than done, esp when your child is in pain!

Not an easy thing to see your child in pain, but we’ve been down this road a few times and we know that better days are just around the corner. I’m thinking that by Wednesday he should notice a huge improvement. CT scan showed Pancolitis, so that will definitely take some time to heal

You're 5 days in, pred can take 2-weeks to work. A higher dose could be needed (like 60mgs daily), possibly.

C diff would get worse while you are on prednisone, if it is truly an infection like it. But I see where you are getting at, "not responding to pred, is that an infection?". A fair question. A s tool test for infections should have been run already, and you can request a duplicate, second test. As those tests have a higher false-negative rate than you'd expect.

notsosicklygirl said...
I agree with the others. Hold tight, I am sure things will improve, but, as John said, I would also redo the stool tests if you feel it's warranted. False negatives are possible. Thinking about you and your family.

Thanks for all of the input. I messaged his doctor yesterday and he said we can begin the prednisone taper now since he is not noticing any improvement and has developed a cold on top of everything else!! Do we even need to taper? He has taken 40 mg for 6 days and I’ve read mixed reviews on whether a taper is even necessary but I surely don’t want him to have any withdrawal symptoms. The stool tests that they did was for C-Diff and Cryptosporidium and the later is still pending. I’m gonna pick up a stool test kit today and have them check for other parasites, etc.
As much as I hate prednisone, I’m on the fence about stopping it; what if today or tomorrow would be the day that it kicked in and started working??? These are the questions that torment me. Never knowing what to do for sure and always worried that I’ll do something to make my son worse. His doctor did agree to keep him on flagyl and see if that clears things up. He is so tired and barely able to eat due to fear of spending all day and night in the bathroom. He was dehydrated when I took him to the ER and RBC/Hemoglobin was a little low, so I can’t imagine that things have improved since he’s still having 10 bm’s Per day or more. I just don’t know what the next step should be. How much longer can he afford to wait on these drugs to kick in??

Oh no, I can't believe his Dr is giving up so soon on the prednisone! That doesn't make sense. I would hope your son can get into remission with the Flagyl alone, but with the way you are describing his symptoms, I'd ask your Dr if you can bump the pred to 60 mg for at least a week, then begin the taper. And then once he's back on track, continue with maintenance therapy.

Quick update
We have decided not to stop the Prednisone. Today is day 8 and I think more time on prednisone is definitely warranted. There may be a slight improvement as of today being that he only had 1 BM during the night as opposed to 3-4. I appreciate you all so much and the helpful advice that’s given. When my nerves are a wreck and I’m uncertain of what to do, you guys always help me sort it all out and I’m forever grateful!!!

notsosicklygirl said...
That's lovely that he had a good night. I hope it's the start of a trend - I am sure it is, and he will begin feeling better and better. What are you planning to do for maintenance once he's stable?

We are weighing our options; of course FMT being first choice once the inflammation is under control. We tried FMT when he was flaring and saw no improvement. The only medicine that he’s ever been on other than antibiotics, is Lialda and Uceris and that was over 6 years ago. Lialda might have been the culprit in his Pancreatitis so we are skeptical of trying it again. I’m wondering what would be a good medicine to start with, that has the least side effects??

iPoop said...
Generally, the first line of UC treatment is mesalamines, like lialda. It's possible to get pancreatitis without any meds with UC, we have higher odds of this. It's possible that the lialda caused a medication-induced pancreatitis. You have no way of knowing for sure, without a rechallenge. That is, trying Lialda or another similar mesalamine again and seeing what happens. It might happen or it might not. Not sure if that is a risk you are willing to take, as pancreatitis is very painful. A good read that goes into much greater technical detail than the above:
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3219486/

Alternatively, you could try a different class of UC medications, like thiopurines (azathioprine.imuran/6mp) or biologics (remicade/humira).

Very true, the UC itself could have caused the Pancreatitis and there’s no way of knowing if Lialda played a part or not. From what I understand, Imuran takes at least a month to reap some benefit... so maybe Entyvio or Remicade would offer faster results. I need to research Entyvio but his GI had a good opinion of it, for what that’s worth.

Yes, this would be a good time to start something like Imuran (while he's on prednisone) bc it takes several months to start working, and he would be tapering at the same time, so once he's off pred, the Imuran kicks in. That's what I did back in November, but unfortunately I had to stop Imuran bc I had severe muscle pain that was just unbearable for me. Right now I'm only on hydrocort enemas (one every other night), and doing okay. My Dr is actually fine with that, and so am I. Eventually I may decide on Entyvio. I hope your son finds something that works for him!

Herbgarden,
Just wondering how your son is doing. Hope he's gotten over his ordeal and is in a good solid remission.