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First time on steroids advice

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Ulcerative Colitis
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Posted 10/18/2016 8:57 AM (GMT -5)
Hi All

I am relatively new to all this (was only diagnosed in April). Things were going ok but in the past few weeks things have flared up. I was advised yesterday by my IBD nurse my calprotection level was at 1800. Is this high? She suggested a course of steroids to get things under control. I know this is the correct course to take but as i have never taken steroids before I am a bit scared (silly I know) of all the terrible side affects especially the rounding of the face. I suppose I am just looking for any info or reassurance from anyone who has been on steroids before ?

My wife and I are due our first baby in January so need the UC to be under control asap

Any advise anyone could give me would be great :D

Thanks
Derek
Posted 10/18/2016 9:01 AM (GMT -5)
I was on Uceris and I had no side effects at all.
Posted 10/18/2016 9:15 AM (GMT -5)
1800 is definitely high. I believe normal is under 50... They should have showed you the results, it shows the ranges. What medication/s are you taking to keep your UC in check? Some people are able to get in remission with rectal meds alone, or mesalamine tablets. I am not sure the extent of your UC, but Uceris may be an option, like Michele said. It's a steroid but it doesn't have as many side effects - some people have no side effects. I've been on steroids a bunch of times, yes, they cause annoying side effects, but they can stop a flare up in it's tracks. You need a plan for treatment after steroids, they don't magically stop the flare up forever - only while you're on the steroids, then you're back at square one.
Posted 10/18/2016 9:18 AM (GMT -5)
ya, you need to tell us what meds you are currently taking before we can say yay or nay to the pred -

congrats on the new kid !
Posted 10/18/2016 9:28 AM (GMT -5)
Thanks for responding guys. I currently take 3G Salofalk granules once in the morning and 1G Pentasa suppository at night. Worked well for a few weeks but the past while not so much
Posted 10/18/2016 10:23 AM (GMT -5)
So, your calprotection is high that's one possible indication of a flare. How's your actual ulcerative colitis symptoms at the moment: total number of bms in a typical day, is there urgency, blood, are your stools formed?
Posted 10/18/2016 10:34 AM (GMT -5)
I would say between 5-7 bm's a day, not formed and quite bloody. I do have an urgency but most of the time it's just bloody gas that is coming out. I would say I only have like 1 good bm every 5 days or so. ?
I am in no pain and dont have any other symptoms than the urge to go to the bathroom thankfully.
My IBD nurse has advised me my UC goes 30cm up from the anus. Is this quite a lot?
Posted 10/18/2016 10:34 AM (GMT -5)
I got scars from steroids. They thin the skin
Posted 10/18/2016 11:38 AM (GMT -5)

derek1978 said...
I would say between 5-7 bm's a day, not formed and quite bloody. I do have an urgency but most of the time it's just bloody gas that is coming out. I would say I only have like 1 good bm every 5 days or so. ?
I am in no pain and dont have any other symptoms than the urge to go to the bathroom thankfully.
My IBD nurse has advised me my UC goes 30cm up from the anus. Is this quite a lot?

Yes, you're flaring. Yes, steroids are justified. If you're worried about steroid side effects than ask for a delayed-release coated, oral pill (known as uceris or clipper), or a rectal-route steroid foam or enema as those all have the least side effects (all 90 percent topical and 10 percent systematic). Prednisone is a hundred percent systematic.

BTW, if your inflammation extends 30 cms, then a suppository no longer reaches far enough. A mesalamine enema would be much better (rowasa enema, pentasa enema, or salofalk enema)
Posted 10/18/2016 12:37 PM (GMT -5)
Yes, you are flaring. I disagree that you need systemic steroids!

You should be prescribed either steroid enemas or 4g salofalk enemas.
With the extent location of your UC which would be into the sigmoid....being prescribed only suppositories for rectal meds is really not enough for impact of treatment. Considering uc starts and would be the most intense at the rectum, the area just into the sigmoid tends to not be treated effectively with supps and oral meds...where enemas will at least cover that area.

If you haven't used retention enemas of either steroid or higher dose mesalamine, thats the route that should be offered first. In truth, your symptoms aren't serious enough or long enough for pred.

Unless you want to take them, ignore all of the above. But once you are off the pred, you should still be on enemas and save the supps for supportive treatment in conjunction with the enemas. Taper down the enemas to a maintenance.

It itks me none of the professionals has prescribed this.

q
Posted 10/18/2016 12:48 PM (GMT -5)
well i disagree with Heather ..... to a point ...... wait. i do agree with most of what she recommended - but use the pred if you need to function until the other treatments have time to kick in - pred should ONLY be used as it's intended - as a short term rescue drug - period -

up the butt is the surefire way to a happy butt !
Posted 10/18/2016 12:55 PM (GMT -5)
Thanks for all the replies guys! I have an appointment with the IBD nurse on Thursday to discuss my options so your posts
Have really helped and reassured me 😀
Posted 10/18/2016 1:05 PM (GMT -5)
Oh Soy....im shocked! Sigh.

Unless you can't afford meds, go for the pred.

I've never taken it ever.....over 27 years. My doc was a firm believer in the patience of the mesalamine and full coverage treatment.

In truth....You have been undertreated and prednisone is NOT THE NEXT STEP to increased med options.

I say it with conviction based on experience and my worst flares were 20 x daily bloody razor like diarrhea...and yes, treatment was only with enemas and oral mesalamine.

Pred is always an option.....should the others fail. You are only on the first rung of the ladder.

Plain and simple. You have a voice in your care and expectations to be treated appropriately.

And keep this in mind....what happens for your next flare....because you will flare. Have a plan because they sure dont for you.

q
Posted 10/18/2016 1:14 PM (GMT -5)
Hehe we all know Heather has an easy uc case, lucky to avoid prednisone and still on just mild, anti-inflammatory mesalamine after so many years. Lucky ducky. All of my flares have required prednisone, but, hey, I'm the guy on biologics (remicade) and immunomodulators (6mp), so clearly I'm a more severe case of uc.

But I think that's a pretty good lesson, some can avoid prednisone while others can't. Some flares are fun sized and prednisone isn't necessarily, other flares are nightmare sized and you got to throw everything including prednisone and sometimes even biologics at them. If uc is one thing, it's highly individual to each person on what's necessary and what works person-to-person :-)
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