When to go on steroids

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ICantTrustMyGut
Regular Member


Date Joined Jun 2016
Total Posts : 30
   Posted 1/1/2018 7:57 AM (GMT -6)   
Hey guys

I've enjoyed a remission of about 20 months, but for the last 3 months I have been flaring sad It didn't start off too badly, just colon pain but not many bms, but for the last month I'm up to 8-10 bloody bms per day/night.

I'm exhausted by this point, have lost a lot of weight and am unable to eat at times. I'm on full dose or oral Octasa (for 2 months), and have taken suppositories and mesalamine enemas for the last 3 weeks.. my symptoms have not fully improved. The left side is better but I have pancolitis, and my right side has been sore and is my biggest concern.

I'm reluctant due to the side effects, but I think it's time for steroids. Am I giving in too quickly? Should I try something else first? Just to note, the last time I took steroids the flare was very nasty, at 20+ bms per day, and vomiting. It's been 2 years since I have taken them, also I have chosen not to take azathioprine.

I want to start this new year healthy! Happy New year!!

Post Edited (ICantTrustMyGut) : 1/1/2018 6:13:29 AM (GMT-7)


TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8360
   Posted 1/1/2018 9:28 AM (GMT -6)   
happy new year to you as well -

what exact dosage of octasa are you taking per day ? and how often are you using the E' & S's ?

for me, many factors determine whether or not pred is an option - mostly it's about current life demands and the ability to meet those demands - say if you have a job that supports your family, then that situation would more likely push you in the direction of using pred - if you are a stay at home spouse, then maybe you can give time and current meds the chance to do the healing -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Post Edited (TroubledTurds) : 1/1/2018 7:49:37 AM (GMT-7)


ICantTrustMyGut
Regular Member


Date Joined Jun 2016
Total Posts : 30
   Posted 1/1/2018 9:51 AM (GMT -6)   
Octasa = 6 x 800mg
Asacol supps 500mg 1/day
Pentasa enema 1g 1/day

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8360
   Posted 1/1/2018 10:19 AM (GMT -6)   
i would see if you can get the 4G version of the enemas - the more the merrier, right ?

ever tried any diet modifications ? some folks find certain foods a problem and eliminating them beneficial -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13220
   Posted 1/1/2018 11:04 AM (GMT -6)   
8-10 bloody bms a day is definitely time for the pred. I'd call that severe inflammation and that justifies oral steroids (mild or slightly moderate inflammation can sometimes avoid the dreaded pred).

Although you might need an escalation to stronger meds in tandem to get results. At least when I flared like that I needed stronger classes of meds. In your case consider immumomodualtors like imuran/azathioprine or 6MP. Or consider biologics like remicade/humira.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Severe flares make the common toilet worse than any medieval torture imaginable. The rack? Bah! I survived the thousand razor blade poop for weeks!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 1/1/2018 11:13 AM (GMT -6)   
Explain not improved fully....

Absolutely get on 4g enemas...

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 1/1/2018 12:08 PM (GMT -6)   
Maybe you could try uceris instead of prednisone, but I agree with iPoop, things sound pretty serious, and considering you have pancolitis, better to do something sooner than later. You could try steroid enemas, but it sounds like you're concerned about the upper parts, and no enema is going to help with that area.

I also agree with iPoop, that going on steroids, whether it's uceris or pred, will likely necessitate stronger maintenance medication. The best thing you can do is find a IBD center with a doctor you trust & work together to find options you're comfortable with.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

ICantTrustMyGut
Regular Member


Date Joined Jun 2016
Total Posts : 30
   Posted 1/1/2018 2:02 PM (GMT -6)   
TroubledTurds said...
i would see if you can get the 4G version of the enemas - the more the merrier, right ?

ever tried any diet modifications ? some folks find certain foods a problem and eliminating them beneficial -


Yes I am strictly gluten free have been for about 2 years, and while flaring i'm also on low residue. I don't have much of an apatite anyway.

ICantTrustMyGut
Regular Member


Date Joined Jun 2016
Total Posts : 30
   Posted 1/1/2018 2:06 PM (GMT -6)   
quincy said...
Explain not improved fully....

Absolutely get on 4g enemas...

q


The left side has improved, there is virtually no pain there, the enemas have soothed it. However, my right side is still tender/sore. I'm in the UK (nhs) I don't have access to a 4g enema.
Diagnosed: Indeterminate colitis (severe) -09/2015
Pancolitis with ulceration of the T.I - 04/2016

Meds: 6 x 800mg, 40mg course of Prednisolone, 40mg course of Prednisolone 20,000ui Vitamin D/ week, B12 injections/ every 3 months, krill oil, VSL#3, higher nature multivitamins, FODMAPs elimination diet

ICantTrustMyGut
Regular Member


Date Joined Jun 2016
Total Posts : 30
   Posted 1/1/2018 2:15 PM (GMT -6)   
Thank you everyone for responding.


iPoop and notsosicklygirl I guess I underestimated the severity, because I'm comparing it to an off-the-scale flare. This flare is absolutely putting my life on pause and do know deep down the best option is steroids. I don't really know much about uceris.. could you explain?

Would steroid enemas help?

I have a GI, but have a GP appointment this week, the GI has a long waiting time and I need something sooner, rather than later.
Diagnosed: Indeterminate colitis (severe) -09/2015
Pancolitis with ulceration of the T.I - 04/2016

Meds: 6 x 800mg, 40mg course of Prednisolone, 40mg course of Prednisolone 20,000ui Vitamin D/ week, B12 injections/ every 3 months, krill oil, VSL#3, higher nature multivitamins, FODMAPs elimination diet

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13220
   Posted 1/1/2018 2:57 PM (GMT -6)   
As you have pancolitis, steroid enemas would only treat 1/2 of the problem at most. Steroid enemas are 90 percent topical and 10 percent systematic.

Clipper/uceris/entocort EC is a delayed-release steroid pill that is 90 percent topical and 10 percent systematic. Pred is 100 percent systematic. It's the systematic bit that causes crazy side effects. Although clipper/uceris is meant for mild/moderate inflammation and you have severe. Clipper/uceris isn't likely strong enough for you... you could try it but i wouldn't expect it to be enough...
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Severe flares make the common toilet worse than any medieval torture imaginable. The rack? Bah! I survived the thousand razor blade poop for weeks!

ICantTrustMyGut
Regular Member


Date Joined Jun 2016
Total Posts : 30
   Posted 1/1/2018 5:35 PM (GMT -6)   
iPoop said...
As you have pancolitis, steroid enemas would only treat 1/2 of the problem at most. Steroid enemas are 90 percent topical and 10 percent systematic.

Clipper/uceris/entocort EC is a delayed-release steroid pill that is 90 percent topical and 10 percent systematic. Pred is 100 percent systematic. It's the systematic bit that causes crazy side effects. Although clipper/uceris is meant for mild/moderate inflammation and you have severe. Clipper/uceris isn't likely strong enough for you... you could try it but i wouldn't expect it to be enough...


Thank you for the info, it's been very helpful.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13220
   Posted 1/2/2018 8:37 AM (GMT -6)   
To clarify further, steroid enemas treat from rectum to, at most, the Splenic Flexure (where your large intestine bends from left side to horizontal across your belly). Sometimes enemas can help pancolitis patients (as our most severe inflammation is always within the rectum/sigmoid area). However, if you are flaring severely everywhere, which it sounds like you are, then an enema would only reach roughly 1/2 way up your large intestine. Steroid enemas are about 5mgs in dosage and usually just one per day (sometimes two).

Newer delayed-release Clipper/uceris/entocort EC (budesonide-steroids) are fixed sized (usually 9mgs), very low dosage pills and not nearly as flexible for our flare treatment as a consequence thereof. You get one pill per day, never multiples, never halves, etc.

Prednisone dosages can be tailored to whatever you need to respond: highly variable doses, half-pills, and can be high doses (20mgs, 40mgs, 60mgs day orally). They deliver a knockout punch, comparatively, and are the strongest of the bunch.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 395
   Posted 1/2/2018 4:44 PM (GMT -6)   
I have moderate pancolitis. Uceris does nothing for a more severe flare for me.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, 40 mg pred, waiting on Entyvio due to reaction Humira. Veg, gf, no cows milk, multi, cal-mag, Aroga, Purrium

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8360
   Posted 1/2/2018 5:41 PM (GMT -6)   
Spring said...
I have moderate pancolitis. Uceris does nothing for a more severe flare for me.



just curious there Spring > have these two things been of any benefit & how long have you been using them ? > Aroga, Purrium
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !
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