UC Relapse - GI suggests to go back to a short predisone taper

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YellowJacket
Regular Member


Date Joined Mar 2011
Total Posts : 80
   Posted 5/4/2011 11:37 AM (GMT -7)   
Hello all,
 
I was diagnosed with UC pancolitis in March 2011.  The GI thought it to be a 6/10 severity so put me on prednisone 40mg and Asacol HD 2400mg.  When I tapered completely off Prednisone on April 22nd, I started seeing increased urgency in BM and light bleeding. 
 
The GI has suggested that I go back on 10mg of prednisone and taper off within 3 weeks.  Is there any logic to this? Doesn't the fact that my symptoms returned after the first taper mean that Asacol has not been effective? 
 
 
---------------------------------------------------
March 2011 - Dxd with UC Pancolitis - 40mg Prednisone, 2400mg Asacol
May2011 - Saw sympoms again after 1 week of being off prednisone. Began another taper from 10mg.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10468
   Posted 5/4/2011 12:26 PM (GMT -7)   
2400mg isn't really a high dose. Many of the users here take the max dose which is 4800 mg and use rectal medications. Have you spoken to your GI about increasing your Asacol dose or about adding rectals? It may just be that Asacol is not for you. There are other similar medications that may work better. You could try Colazal or Pentasa or Sulfasalazine. There are some options but sometimes when one is not effective, none are. The next step a traditional doctor would recommend if you couldn't stay stable with mesalamine medications like Asacol would be 6mp or Imuran. I hope you feel better soon!
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa + 6mp + Allopurinol | Currently: stable - Asacol (3200mg) + 6mp

YellowJacket
Regular Member


Date Joined Mar 2011
Total Posts : 80
   Posted 5/4/2011 12:47 PM (GMT -7)   
Thanks for the response. The information that is shared here is truely life changing.

I will ask the doctor about increasing my Asacol dose (thankfully I have no 5ASA intolerances) as well as adding rectals.

My symptoms even at their worst were never accompanied by any pain or cramping (although the urgency and frequency of BM's were no fun at all), so maybe the GI is not treating with as much urgency.
March 2011 - Dxd with UC Pancolitis - 40mg Prednisone, 2400mg Asacol
May2011 - Saw sympoms again after 1 week of being off prednisone. Began another taper from 10mg.

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3252
   Posted 5/4/2011 12:52 PM (GMT -7)   
Hi -

Well.... good question. The way I experience it all is that the Asacol sometimes isn't strong enough on its own to squelch a flare. And, for that matter, it doesn't keep me from having flares even though I've been on it a long time - but I do believe my flares are less frequent and less severe than they would be without the Asacol.

Many people, when they taper off Prednisone, have a rebound of their symptoms. A slower taper will sometimes help avoid that.... perhaps your taper was a little fast?
(The gut takes an incredibly long time to really heal, in my experience, so a few days without blood doesn't mean the tissue is really healed and strong.)

Yes, going back up to 10 and then down might help...... or, if I were in your shoes, I would ask to try the rectal meds - either steroid enemas, since you've been on the steroids with good repsonse, or the Rowasa, related to Asacol - very safe, (some of us continue them twice a week or so in remission in hopes of prolonging the remission....).

I, too, have pancolitis, and even though the rectal meds don't reach all the way up, they have gotten me out of many a flare without having to resort to oral pred.

Sorry, I got interrupted while writing.... but I hope this helps some.
Co-Moderator, UC Forum
Age 55. Diagnosed UP 1983, UC 1986
Asacol - 16 pills/day,
Metamucil - 2 doses/day
VSL#3DS 4 x daily, Multivitamin, Calcium and D
homemade yogurt each day
cortenema and Canasa
mini-flare...
Son, 17, dx pancolitis 2007, in remission

Loves-Pearls
Regular Member


Date Joined May 2011
Total Posts : 71
   Posted 5/4/2011 6:07 PM (GMT -7)   
Hi and thanks for sharing. I was diagnosed in April and started 40 mg prednisone and 3200 mg Asocol. Just last week my doc had me start the prednisone taper to 20 mg for 14 days, then down to 10 mg, then we'll see.

At my first doc visit since the diagnosis, doc wanted me to start sulfazine ec. He seems to like it better. He said something about sometimes the asocol doesn't stay inside where it needs to be in order to work and was hoping I could tolerate the sulfazine because that's what he wants me on...or something along that line. So now, instead of 4 asocol twice a day I take 2 sulfazine and 2 asocol twice a day.

The main reason I thank you for sharing is that I am worried about the prednisone and bleeding/urgency again after I taper off. Please keep us posted? I hope you're feeling better soon.
Diagnosed: Pancolitis 4/11/11
Potassium CHL ER 10MEQ 2@2xdaily (done taking this)
Prednisone 40 mg daily...at 20 mg & tapering
Asacol 4@400 mg 2x daily
Sulfazine EC 500 mg...4/27/11 take 2 Asacol & 2 Sulfazine 2x daily
Lomotil as needed
Anucort-HC suppositories as needed

NatWell
Regular Member


Date Joined Dec 2010
Total Posts : 101
   Posted 5/29/2011 1:03 PM (GMT -7)   
are there any stories out there with permanent remission or 20 flare-free years? 

Dunia77
Regular Member


Date Joined May 2011
Total Posts : 149
   Posted 5/29/2011 1:15 PM (GMT -7)   
NatWell said...
are there any stories out there with permanent remission or 20 flare-free years?


Well, my story would be about 'only' a little more than 5 years in remission, and last 2 years of those without any meds. But that story ended in April 2011 with a big-time flare up and Predn and spreading UC for almost the whole colon (how should I call it?). But As I responded very well to Colazal before, now I hope it will be the same with Lialda. Still hope to taper Pred without any trouble (I'm down to 10mgs per day and doing good, I'd say). Still hope for a good, long remission afterward.
UC diagnosed 2005
Without major flare ups until April 2011 (over two years without ANY meds)
Currently: Prednisone (10mg/day, tapering every 5-7 days), Lialda 4 tabs/day
OTC: Multivitamin, Calcium plus VitD (150% daily dose), potassium (double daily dose), Primadophilus Reuteri, magnesium, ginseng, vitE

nightside of eden
Veteran Member


Date Joined Sep 2009
Total Posts : 523
   Posted 5/29/2011 6:15 PM (GMT -7)   
i was in remission for 10 years, and have been flaring on and off the past 5 straight years....such a weird disease

concertboy
New Member


Date Joined Jul 2011
Total Posts : 3
   Posted 7/26/2011 7:27 PM (GMT -7)   
Hi All:

I had my one and only flare way back in university - 24 years ago! Doctors were not even sure what it was , I just fasted for 10 days and it went away. Fast forward to this year and it came with a vengeance. I am now on Asacol 6x800 and tapering off Prednisone, down to 10mg. Still have soft bm's but only occasional bleeding. I hope to make it off this Pred, get better and stay that way for the next 24 years!

Good luck all.

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 373
   Posted 7/26/2011 7:46 PM (GMT -7)   
My GI said the same thing when I had a relapse. She wanted me to taper off on Pred starting at 30mg for 10 days then 25mg for 10 and so forth. She also wanted me to take Imuran with it. I refused to take the Imuran because she hasn't tried me on any ASAs so far. But my GI seems to have the same logic. When I flare she puts me back on Pred because according to her the 5ASAs are not designed to stop a flare, they're designed to maintain remission. Pred is what fixes the flare. So perhaps your flare was never in control and you need more Prednisone. I was on 40mg of Pred and once I stopped using it my symptoms also returned (bleeding, tons of BMS ect.) which suggests that my UC was still not in control. It could be that you stopped seeing blood in your BMs but inflammation was still occurring. Regardless, I think starting you up on Prednisone again is pretty standard but this time around make sure the 5ASA you use is effective. Perhaps ask your GI to up the dosage or try you on a different one. Unfortunately a lot of these medications are trial and error because we all react differently to different medications.
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Prednisone, Pantoloc, Ectocort Rectal Enema, Sulphasalazine
Current Drugs: Budesonide Rectal Enema

journey2health
Veteran Member


Date Joined Oct 2009
Total Posts : 2687
   Posted 7/26/2011 8:16 PM (GMT -7)   
Loves-Pearls, that's a long time on 40 mg. Since April? Hope you get off soon.

My doc pronounced me in remission after I got off proud and told me to drop from 12 Asacol to 6 a day. I flared seriously within a month and had to go back on prednisone and it took me another four months to taper off even though the flare improved in a l couple of weeks and just remained limited to the rectum. For pancolitis people, Asacol doesn't reach the rectum so enemas, enemas, enemas. Very important.
In remission with occasional blips --pancolitis since 8/09. 8 Asacol, Rowasa/thrice weekly (nightly if inflamed), Probiotic -RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules, vitamins, fish oil, calcium, l-acetyl carnitine. Eat anything, but limit dairy, red meat, no alcohol. Bipolar/anxiety/depression: lamictal, Lexapro; Sleep-(ZMA) zinc-magnesium-B6, occasional Zyprexa

journey2health
Veteran Member


Date Joined Oct 2009
Total Posts : 2687
   Posted 7/26/2011 8:20 PM (GMT -7)   
Loves-Pearls, that's a long time on 40 mg. Since April? Hope you get off soon.

My doc pronounced me in remission after I got off pred and told me to drop from 12 Asacol to 6 a day. I flared seriously within a month and had to go back on prednisone and it took me another four months to taper off even though the flare improved in a l couple of weeks and just remained limited to the rectum. For pancolitis people, Asacol doesn't reach the rectum so enemas, enemas, enemas. Very important.
In remission with occasional blips --pancolitis since 8/09. 8 Asacol, Rowasa/thrice weekly (nightly if inflamed), Probiotic -RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules, vitamins, fish oil, calcium, l-acetyl carnitine. Eat anything, but limit dairy, red meat, no alcohol. Bipolar/anxiety/depression: lamictal, Lexapro; Sleep-(ZMA) zinc-magnesium-B6, occasional Zyprexa

Mackster
Veteran Member


Date Joined May 2007
Total Posts : 718
   Posted 7/27/2011 9:33 AM (GMT -7)   
journey2health, loves-pearls posted may 4, so if pred started in april, AT THAT TIME it wasn't so long.

YellowJacket
Regular Member


Date Joined Mar 2011
Total Posts : 80
   Posted 7/27/2011 11:08 AM (GMT -7)   
Hi all,

Since this thread got bumped to the top recently, just thought I'd update.

After posting I followed the forums advice and began by asking my doctor for rectals. He was already thinking about 6mp, but gave in after realizing my cscope had shown very little inflamation beyond the sigmoid colon.

As soon as I added the rectals (while still on 15mg of prednisone) the bleeding and mucus went away completely.

Then as a I slowly tapered 15mg -> 10mg -> 7.5 -> 5mg -> 3.75mg -> 2.5mg -> 1.25mg, I began seeing a little pink mucus at 1.25mg. I decided to finish tapering off the prednisone and saw my doctor a week after I was completely off.

I asked him to up my Asacol dose, which he agreed to instantly after realizing I was only at half of the max possible. After increasing my AsacolHD dose from 2400mg to 3200mg (just 1 pill a day extra) I am feeling quite well. Still some blips now and then, but no urgency and 1-2 BM's per day.

Moral of the story: Information on this forum is golden and doctors in this profession are increasingly playing a game of monkey see monkey do...so I guess it is up to us sufferers to make best guess decisions for ourselves.

Thanks to all again!
March 2011 - Dxd with UC Pancolitis - 40mg Prednisone, 2400mg Asacol
June - July 2011 - Started mesalamine enema by night and canasa supp. during the day. Slowly tapered off pred. Seeing some pink mucus occasionally.
July 19th - Upped AsacolHD to 3200mg - almost no symptoms left now :)
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