HealingWell
Search Close Search
☰

Should I have responded to 60mg IV pred already?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/12/2017 11:51 AM (GMT -5)
I've been on the hospital on 60mg of IV pred since Tuesday night and it's now Sunday noon-time. I have really rough nights and mornings and then get my dose of pred in the am. Solumedrol actually, which is the same as prednisone.

I'm still going about 6-7x at night, mostly blood. Idk how many times per day, but prob more than 10x. In the am I have a bad stomach ache and I'm crampy all day. Not enough to need morphine but still uncomfortable enough. I think the Tylenol is helping take the edge off.

I'm waiting to start remicade tomorrow but I kind of feel like the pred should have kicked in already. I have only seen the PA and attending for the gastro doc I usually see. The big doc isn't in until tomorrow bc of the weakened rotation or whatever. In your precious experiences, how long does it take for the pred to kick in? They did say I was steroid refractory, which means I'm not responding to steroids. So does that mean I shouldn't expect any relief from the pred and just hang iChat until remicade ?
Posted 2/12/2017 12:06 PM (GMT -5)
"They did say I was steroid refractory, which means I'm not responding to steroids. "


who exactly is "they" and what factors did they use to determine that ?
Posted 2/12/2017 12:23 PM (GMT -5)
IV steroids kick in fast, I'd agree on steroid-refractory. What about cyclosporine instead (it's an IV immunomodulator that's fast working)?
Posted 2/12/2017 12:46 PM (GMT -5)
They = the gastro doc I saw before my sigmoid on Thursday bc I've been on and off for a year now and no response.

They don't think antibiotics bc I don't have an infection.
Posted 2/12/2017 6:29 PM (GMT -5)
sounds like not responding

i hope there is time for Remicade to work.
Posted 2/12/2017 8:34 PM (GMT -5)
Have you been having stool tests? Sometimes the results aren't accurate. Not a bad idea to test again if you're not responding to steroids. I always responded very fast to steroids, but not to anything else, that's why I decided to have surgery. I hope they can get you started on remicade very soon.
Posted 2/12/2017 8:38 PM (GMT -5)
When did you start Remicade? Maybe it's time for another dose. It only worked for me on a double dose.

I'm not sure that you can take Cyclosporine and Remicade at the same time....I never discussed it with my GI.

If you're going to use Cyclosporine make sure that your GI is very familiar with using it, not all GIs have experience with it and you need an experienced doctor to treat you with Cyclosporine.
Posted 2/12/2017 8:38 PM (GMT -5)
Yes, had one last week and one the week before.
Posted 2/12/2017 9:03 PM (GMT -5)
My son only responded for 10 days on prednisone (oral) but remicade has worked well for him but we had to increase his dose to keep it working for more than a few weeks per infusion. Hopefully (and statistically speaking) likely it will work for you. Good luck, I hope you start feeling better soon.

Post Edited (NiceGuyEddie) : 2/12/2017 7:07:04 PM (GMT-7)

Posted 2/13/2017 3:14 AM (GMT -5)
If I were flaring as you are, it would take several days for me to see an effect from the steroids. Since your docs have concluded you are steroid refractory, I guess it's a moot point. Good luck tomorrow with remicade. Keep in mind that should you not see results right away, they can increase the dose or decrease the time interval. I'm curious to see if they start you at a higher dose to begin with since you've flare is pretty bad. Let us know how it goes.
Posted 2/13/2017 6:17 AM (GMT -5)
Thanks. Yes. I'm wondering if they'll keep me in here until my symptoms improve or if I can go home after the infusion. I just want to go home, but then I also don't want to be back in here in a week in the same place.
Posted 2/13/2017 7:07 AM (GMT -5)
I'd ask for a double-dose of remicade? That is 10mgs per kilogram.
Posted 2/13/2017 8:03 AM (GMT -5)
A double dose isn't that high, my GI will write scripts for triple doses.
Posted 2/13/2017 8:06 AM (GMT -5)
When I was hospitalized and not responding to Iv steroids they started me on remicade. I was told I would see some response in 24 hours. If no changes then surgery would be considered. If improvement I could leave. I saw immediate improvement. I was discharged the next day after infusion. It's important to note even though I saw improvement after the first dose, it took months to see full improvement. I went from 20+ times a day all blood, to 8-10x a day with light blood, then after each loading dose I got a bit better.
Posted 2/13/2017 8:26 AM (GMT -5)

Doggiedo said...
Thanks. Yes. I'm wondering if they'll keep me in here until my symptoms improve or if I can go home after the infusion. I just want to go home, but then I also don't want to be back in here in a week in the same place.

if you do not need the IV steroids, there is no reason to stay in Hospital while waiting for next Remi dose. IF you want to go home, then go.
Posted 2/14/2017 7:51 AM (GMT -5)
I asked the diff between staying here and getting the oral meds and going home. The doc said I was so bad that I needed the IV solumedrol since it was more powerful than the oral. And they can keep an eye on my pain. So it's been a week and I do okay in the afternoon since they give me my dose of solumedrol. But since last night at 8pm - a total of 12 hours- I've had to go 9x and mostly blood. The pain is pretty not great too.

I also had a sore throats yesterday and feel like it's turning into a cold today :/ feeling a little defeated right about now.
Posted 2/14/2017 8:25 AM (GMT -5)
When was the last time they did a stool sample on you?
Posted 2/14/2017 8:32 AM (GMT -5)
Last Thurs. and currently it's not diarrhea but mosltynjust globs of blood or dripping blood. So no c diff.
✚ New Topic ✚ Reply