IV steroids?

Hi all,

I just got off the phone with my IBD nurse who told me that my condition has worsened to the point where they want me to come into the hospital as an in-patient and spend 5 consecutive days on IV steroids. Has anyone else had this? What was your experience?

I am also hesitant to do this because after being on oral steroids for 3 and a half months I have developed a very bad case of oral candidiasis (thrush) which is causing bleeding from the throat for the past three weeks.

Any insight would be welcome.

Thanks,

Well I worry that I am steroid refractory myself as oral steroids while they did make some small term gains at around 30mg (reduced bowel movements to twice a day, mostly formed but with mucus) did nothing long term other than prompt an array of bad side effects and they were definitely the cause of this oral thrush.

I have been taking VSL#3 combined with Acidophilus Plus capsules, using Nystan as well as salt water and ACV but still has only partially cleared it.

It seems pointless to me to temporarily gain some control over the UC if they general health is ruined once again by aggravating the oral thrush as well as being subjected to the usual steroid side effects... would it not make more sense to just skip it and go straight to Remi or whatever the eventual treatment will be?

Post Edited (Renegade88) : 12/9/2015 5:21:19 PM (GMT-7)

Hey Renegade88,
I was put on 40 mg Prednisone a few weeks ago, and it wasn't helping, so I god admitted a week later to the hospital on IV hydrocortisone and prednisone. 24 -48 hours on IV and huge difference in my symptoms. I was in the hospital for 3 nights and insisted to be discharged on oral Prednisone (40 mg), thinking about my insurance out of pocked maximum co pay, and 3 weeks later I am on 30 mg per day, doing better! I didn't wanted to get admitted, but I couldn't go to work, couldn't sleep...couldn't function right.
I wish you faster recovery, but get help as soon as possible!!!

I certainly did try Azathioprine - and the combination of prednisolone (20mg) azathioprine (100mg) and oral iron ended with me being rushed to the hospital in an ambulance with uncontrollable vomiting (that was after just under a month on Aza). I subsequently stopped all medications apart from predafoam and the remaining oral pred. I met my consultant on the 11th of last month who said to continue with steroid enemas for 1 month (as well as having an iron infusion) and see where we are (now), but within a week of meeting with him the on-going steroids caused the oral thrush to come on which I have been battling with ever since - even though I have been off pred for 2 weeks.

Do you have to 'taper' off IV steroids? The prospect of being given even more pred after only just completing a 3 and half month round is very unappealing, especially as my hair, bones and skin haven't even recovered from the last round.

My major symptoms at the moment are watery stools, sometimes bloody, and occasionally almost without warning 3-4 times a day, and it has been the same ever since I tapered off steroids. Haven't seen anything even remotely resembling a formed stool in weeks and I am starting to lose weight again.

Seems like I'm in a situation where I have to do something, but I don't feel unwell enough to subject myself voluntarily to sitting in the hospital for 5 days being pumped full of steroids only to be put on another 2 month course... God knows what I'd look like by the end of it. It seems like the doctors are pathologically obsessed with 'controlling the flare' (i.e. the same condition I've been in for the last 12 months which has been almost entirely unresponsive) at the expense of all other well being.

I have also been trialing phosphatidylcholine but I am waiting on another box, just got through my first few weeks worth as well as VSL#3.

I have tried Pentasa (mesalamine) both oral and rectal, oral did nothing, rectal just prompted more of the D. Then I moved onto Pred which controlled the UC reasonably well but the symptoms came on just as bad once I hit 10 - 5mg.

I've tried smoking, nicotine patches, Boswellia, Curcumin, recently; and the whole health food shop in the past (aloe vera, slippery elm, coconut oil, vitamin e, I've tried it all). Now taking VSL#3 and phosphatidylcholine with Acidophilus which I hope will at least restore some balance to the throat.

In terms of drugs I have tried Aza and I believe I don't tolerate it very well, but then it could have been the combination of drugs I was on. I'm not very eager to try it again, though my consultant did suggest I might want to. Other than that, I haven't tried any other immuno/biologicals.

You're on remicade - that is an option that has been discussed. How do you find that?

I am currently in a hospital. They gave me IV steroids, specifically Dexasone (Dexamethasone). I have a mild case of UC, this second flare my stools were liquid, my entire stomach hurt, lots of tiredness, I was white in the face like death, couldn't eat, lost weight.

Currently off of IV steroids for 2 days, it helped a lot.

Hi Renegade88 -- Hopefully this is a helpful point, I just throw it out there because you sound frustrated ... I understand that it is tough to feel like your doctors want you to take drugs you may not want to take, and of course as a patient you have the right to decline interventions that make you uncomfortable. But I'd just point out that routine and continuous flares like the one you are having now are problematic beyond the immediate discomfort. In the long term, your risk of colon cancer goes up significantly when you can't get a flare under control, so your doctors are probably trying to manage this in part with that in mind.

For what it's worth, I also agree with the other members who said prednisone needs to be a bridge to something else. Some of the "hardcore" drugs are scary -- I was terrified to start Azathioprine -- but the truth is that uncontrolled UC is also scary, and many common drugs like birth control are actually scary if you read the drug info, it's just we usually don't bother because they are so commonplace. I just got off Azathioprine after 7 years, and though I was TERRIFIED to start it, I ultimately had an excellent, and I mean excellent quality of life on it, and for me that was worth more than any very small risk of side effects, none of which I ended up experiencing.

Feel better, and remember to keep the big picture in mind. All the hair, skin, bones, weight stuff sucks, but it all will get better. The bigger issue is making sure you get better. Just my two cents.

what steroid are you getting? hydrocortisone?
if you have seen improvement that is a good sign
what therapy are you transitioning to?

get retested for C. diff and other pathogens and CMV
I really think starting remicade is a good idea

figured it was hydrocortisone based on dosing

If i were in your possition I would start both remicade and 6mp
there are many studies that show that remicade along with a thiopurine is much more effective (in fact nearly doubled efficacy) than either of the two alone
it also helps prevent you from making antibodies to the remicade

what is your crp?
albumin?
fcp?
sed?