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Experience with IV steroids

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Ulcerative Colitis
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Posted 6/2/2015 3:18 PM (GMT 0)
I had the remicade on Thursday night on the 7th and that morning my crp was 141
The next morning it was 79
They may give you Tylenol and Benadryl before the remicade
You can ask the nurse to push the Benadryl really slowly so it doesn't bother you
The infusion doesn't burn at all
They may start it super slow to see how you react
Posted 6/2/2015 3:23 PM (GMT 0)
A tuberculosis skin test and chest xray are often given before starting remicade, just to make sure you don't have tb.

You are often premedicade with an antihistamine (benadryl or claritin) and Tylenol about half an hour before your remicade infusion (helps reduce odds of an infusion headache). Remicade is mixed and added to an IV bag. Your IV is already set, I am sure they'll use that one. A nurse monitors your temperature and blood pressure, and controls the rate in which you receive remicade. It's a 2-3 hour process. Some report being sleepy during or after the infusion.

Remicade pulled me out of a yearlong flare and dependency on prednisone, and has given me the only remission I've had with uc. It took until a week after the second remi infusion before I noticed any improvements, and bigger improvements a week after the third infusion, steady improvements thereafter until I achieved remission after a full year of remi. Some report it working faster than it did for me. At the beginning, the first 3 infusions are known as "loading doses" which are all about getting remi up to a therapeutic level. I started at 5mg/kg dose, but they might double your dose to 10mgs/kg given your predicament/symptoms, I'd ask as it may work faster.
Posted 6/2/2015 3:56 PM (GMT 0)
Over half of the people, people who have failed other therapies, get significant relief from Remicade after the 1st (or sometimes 2nd, 3rd) loading dose.

about 1/3 of people get remission (again, people who have not gotten remission on other therapies).

You chances are good, lets hope for the best.

The most successful long-term treatment seems to combine 6mp or Methotrexalate, because you may develop antibodies that stop Remicade from working. You should ask if they plan to give you one of these additional medications. It would suck if you only got 12 or 15 months of benefit form Remicade.

Don't worry about RB. Remicade does not cause TB. If you have TB germs in your body, Remicade can let them blossom. But if you get a clean TB test, then there is no way Remicade can cause TB.

Good luck
Posted 6/2/2015 7:02 PM (GMT 0)
Wishing you all the best so you can be a Happy Chick again! Hang in there!!
Posted 6/2/2015 7:37 PM (GMT 0)
Well after my last post my most recent blood test shoes my CRP is reduced from 80 to 51 so it's going down. Seems like they are finally working. So may be no need for remicade but I am ready regardless. I am just ready to get better and get out of hospital.
Posted 6/2/2015 8:03 PM (GMT 0)
Hang in there! you can do it! I know its really hard to be in the hospital but you are getting much better care there than you can give yourself at home
it will enable you to get better faster and than you can be a better mom when you get home
you are doing the best thing for you and your family by staying in the hospital
please update how you are feeling
Posted 6/2/2015 9:52 PM (GMT 0)
Well I had a bowel movement two hours ago and I am only just getting over it. I was in that much pain I was crippled over the toilet. And I feel so weak and am finding all the drugs hard. I am in a dark dark bad place at the moment. When will god cut me a break and let me live how I want to live?

Plus side is BM looked better. Still blood but stool is getting light brown and forming
Posted 6/3/2015 5:52 PM (GMT 0)
Update! Third day on IV steroids and my CRP has reduced from 80 to 26 so we are now heading in the right direction. They are confident that I shall be ok with this now and no need for remicade yet. Even though my numbers are down I'm yet to see any relief in my symptoms. Still lots of blood and frequency but I am hopeful that after a few more doses, tomorrow will be a new day full of good surprises.

If I start to see a change in symptoms tomorrow then they shall switch me to oral pred taper and discharge me from hospital! Yipee! Fingers crossed that I do see relief because if not then it's flexi sig time. The only thing is I've been to he loo again and there seems to be no change to symptoms. Still loads of bright red blood and horrendous cramps. Should that still be happening if my CRP is at 26 which isn't that high? Or could there be a possibility of a fissure or tear up there?
Posted 6/3/2015 11:19 PM (GMT 0)
If you want my honest advice, I'd ignore the CRP and go on Remicade.

I once had a CRP of 350 which IV steroids brought down to about 10. Almost the moment I was off the steroids I flared up and was in hospital again.
Posted 6/3/2015 11:42 PM (GMT 0)
I am with NCOT. Things seem unstable. Pointless to leave and take pred and then allow things to go back into a flare up slowly over time. Better off using remicade and trying to get off pred ASAP.
Posted 6/4/2015 12:42 AM (GMT 0)
I'd ignore the CRP numbers if your symptoms are unchanged. My doctor has never mentioned that test to me. I'm not sure a majority of doctors use it possibly because it doesn't reflect the severity of patient symptoms.

Have you asked for pain meds? They can cause problems with UC but you're in too much pain to do nothing. I took Norco (spl?) when I was hospitalized and had no issues.

Also, you should discuss a higher dose of steroids. I spent a week in the hospital on IV steroids -40 mg- and barely improved. When I saw my internist months later, she told me she'd had patients on 100 mg and they should've increased my Pred. Now I think everyone should start on very high doses of Pred and then drop down to the more typical levels after a few days.
Posted 6/4/2015 12:55 AM (GMT 0)
Steroids are half the battle, the other half is getting off them. I agree with NCOT and notsosicklygirl.
Posted 6/4/2015 1:22 AM (GMT 0)
crp is only one of many indicators of inflammation if you are still having that much pain and still bloody Ds than there is obviously something going on in your colon
is it possible you have c.diff- do your BMs have a very bad smell and explosive quality,
even if you were negative a few days ago (they probably tested when you were admited) you can still have it as IBDers especially hospitalized ones are very prone to c. diff
tramadol is a strong ibd friendly pain med
Posted 6/4/2015 9:00 AM (GMT 0)
Been tested for all bacterial infection including c diff and it's negative. BM's seem to be reducing slightly. CRP is usually accurate for me as is calprotectin. Tb test done for remicade so it's on standby if needed. Because azathioprine was working so well before this and this has only happened because it was so foolishly reduced then I think they want to give that drug another whirl before remi. Just need to tame this flare first.

May have a flexi sig today will see what's going on up there!
Posted 6/5/2015 3:16 PM (GMT 0)
How are you doing? Hoping you are seeing improvement!
Posted 6/6/2015 6:47 AM (GMT 0)
Update is that I was discharged from hospital yesterday with 40mg oral pred. My CRP was yesterday at 14 and they think it will just reduce slowly now on the pred. I was meant to stay in hospital as symptoms are still present but doc said that as it's the weekend there will be no point as there shall be no gastroenterologists available and that they would not do anything different in my treatment plan there than they would at home. So trying to recover at home now using oral pred and enemas twice a day. The inflammation is completely tail end in the rectum and sigmoid and so he thinks the enemas will be the best thing even though it's painful to put them in at the moment.
Posted 6/10/2015 5:59 PM (GMT 0)
Right.... Well things have gotten pretty interesting since I left hospital last Friday. The IV steroids failed to work and so did the oral pred so I had a flexi sig today and it showed my colitis has spread throughout my descending colon and is now moderate to severe! So I've just had my first dose of infliximab and they said I should see some difference in symptoms tomorrow. Back in hospital for two days to monitor me and any reactions to the drug but feel ok at the moment. My temperature has gone up but that's because of the level of inflammation in me at present. I am hoping for some positive improvement by tomorrow. If this doesn't work then I need to start considering surgery (which I am learning to accept may be inevitable and I'm ok with it).
Posted 6/10/2015 6:25 PM (GMT 0)
Oh man!!!
That must be really frustrating
I hope the remicade works for you
It did for me and I was having 100 mg of IV steroids 4x daily and that didn't help me
I saw improvements right away but it was drastic after the second loading dose and I'll let you know what happens after my third loading dose this Friday
Hang in there!!!
And I know how horrible it is to be in the hospital but make sure you don't get discharged prematurely
Sending hugs your way
Posted 6/10/2015 6:29 PM (GMT 0)
I wonder what dose of steroids they are giving you? Last time I was hospitalized I was on a very high dose and it knocked the inflammation down to nothing practically over night! I think it's crazy that they said you should see results by tomorrow with remicade. Some people do but many people do not. Some people are nonresponders but most do respond, that doesn't mean they will respond withing a day though!!! Please take it easy and think positive. There is a really good chance you will get some relief from the remicade and get off the steroids quickly.
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