Refractory UC/Proctitis Aiming for Remisssion

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Regular Member

Date Joined Dec 2007
Total Posts : 75
   Posted 1/20/2008 6:07 AM (GMT -6)   
Thanks for your candor. Reading the UC Forum postings has helped guide and evaluate treatment decisions to this point.

This is my first-time posting on the UC Forum. I am seeking relevant feedback about my current situation with medications and symptoms. Here is a summary with questions at the end.

Diagnosed with mild UC-proctitis by colonoscopy & biopsy November 2006. Treated four times with consecutively longer courses (3-5 weeks) of rectal mesalamine (Canasa 1GM) suppositories (Nov 06; Feb 07; June 07; Aug 07). My GI doctor advised each time that I take the suppository for one week beyond resolution of symptoms then stop. With each round of treatment the symptoms improved more slowly, and then returned more quickly with cessation of the suppositories. The UC never really went away - as soon as I withdrew treatment, it came right back was harder to control each time.
I was ready to drive up to Vancouver, BC to buy a year's supply of the suppository to use as maintenance treatment. Here in the US Canasa costs US$10 per suppository - so I assumed that it would be a fraction of that up in Canada.

After six weeks of continuous treatment with Canasa, in September 2007 (the fourth round of Rx), the UC symptoms began to worsen. The Canasa was no longer effective (and I never went to Canada for lower priced Rx). By phone consult, the GI doctor prescribed hydrocortisone suppositories. Overnight the symptoms worsened dramatically on the HC suppositories. After a trial of 7-days, I stopped the HC suppos & restarted Canasa. In Oct 2007 I had a barium contrast CT of Abd & pelvis, repeat colonoscopy, bloodwork and a followup appointment with the GI. There was no progression of the UC in distance or severity. The GI was puzzled by my persistent "mild" UC/proctitis and concluded that some of my other symptoms were attibutable to IBS. We discussed prednisone, imuran, and a third immune suppressant option. But neither of us were ready to pull out the big guns.

Early November 2007, I couldn't take living with UC any longer and called to get started on my first ever course of prednisone. After three weeks of no improvement at 20mg, we stopped the canasa and increased the prednisone to 40mg (Dec 2, 2007). Within two-three weeks of increasing the prednisone to 40mg, all the glucocorticoid side effects were taking hold and became noticeable; the good, the bad, and the ugly. (Hello treadmill). But the UC symptoms persisted.

Last week I met with the GI. His diagnosis: refractory "mild" UC/proctitis. My goal is to get into remission so I can finish my graduate degree and get back into the workforce. We agreed to initate treatment with the second line approach, immune suppression with imuran (azothiaprine). I restarted canasa suppository and continue with the prednisone at 40mg while getting the lab workup before starting imuran; genetic enzyme assay, TB skin test, CXR. The screening was all clear and I started imuran at 50mg yesterday. By the way, yesterday happened to also be the first day without any bleeding since I don't remember when. It seems that adding canasa back with the prednisone was a good step & timing.

In four weeks I'll recheck with him and monitor the bloodwork. The plan is to increase the dose of imuran over three months (because of slow onset & to minimize toxicity) before beginning the prednison taper. While on imuran for maintenance, any flares would be Rx'd with short courses of prednisone.

So, I've got a few questions you might have experience with.

1) Anyone one have refractory UC/proctitis - how have you gotten yours into and maintained remission?

2) Does this recipe of medications sound familiar?

3) What does remission mean for UC/proctitis?

4) How many people are maintaining UC remission with imuran alone?

5) If it is not toxic up front, and you have been a responder, does imuran maintain remission for life?

about the side effects of prednisone: My primary care provider (PCP), says the fat pad deposits will melt away (halelulah), as will the mood improvement (darn). Meanwhile, the prednisone has caused insulin resistance and he wants to start me on oral diabetes Rx. Last week a mid-day post-prandial glucose was 200. I got him to let it wait till I have the followup appointment and labs with the GI. Over the last few days, though, I've become worried about it; I've noticed it harder to read both up close and at distances, and I am definately experiencing a thirstiness as if I were on the hot summer plains of India. It is unbelievable to add on a whole new layer of complications requiring separate attention and treatment until the other is in control and we can eliminate the cause of this and hope it resolves too.

1) Has anyone developed DM type 2 from prednisone?

2) How did you control it and did it resolve when you got off prednisone?

And finally, any VEGETARIANS out there in UC land? Do you have any helpful wisdom about dietary/nutritional practices to keep UC in check?

Thanks for taking the time to read and respond,
Miz D from Oregon
47 yo Female in the Willamette Valley, Oregon, USA

Mild-Refractory UC/Proctitis, Dx 2006
Other GI Dx: IBS, GERD, Binge Eater h/o Bulemia, Vegetarian, Hyperlipidemia, Overweight (BMI @29 after 10-weeks of Prednisone)

GI Meds: Prednisone, Mesalamine, Imuran, Probiotic, Vytorin, Famotidine/Prilosec, Tums, Miralax, Senna, Hoodia, Flax Oil, Goat Yoghurt

Other Dx: 1988 Fibromyalgia: Chronic Pain, Fatigue, Sleep Dysfunction, Depression, Anxiety

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 1/20/2008 11:31 AM (GMT -6)   

Welcome to HealingWell, Denny. I'll try to make my response as organized as your question.

1. I was diagnosed with moderate to severe proctosigmoiditis in 2001. I finally got into remission about April 2006. I guess that qualifies as refractory.

2. The medication sound very familiar. Here is my journey through meds: started on oral mesalamine (Asacol) immediately after initial C-scope. Within a week, I was much worse, but doctor asked me to stick it out for another week. When I was still really sick, he started me on Pred and told me to discontinue the Asacol for 5 days then restart. My symptoms improved but when I started the Asacol again, I once again got much worse. Discontinued Asacol and started Colazal with some improvement, but would get worse every time the Pred was tapered. Prednisone changed to Entocort. Colazal changed to Pentasa. Got a little worse - 20 stools a day, bleeding and pain. Changed GI's. New GI did another colonoscopy, put me back on Colazal, continued the Entocort and started me on Rowasa (mesalamine enemas.) Surprise, I don't tolerate mesalamine from the other end either. Started on Azathioprine with some improvement - 5-8 stools a day, bleeding only a couple of times a week, some pain-free days. Every time I tried to taper the Entocort, I flared more. Started Remicade infusions March 2006, in remission by the end of April. My last C-scope showed no inflammation at all. Now on Colazal and Remicade only.

3. Technically, remission is no symptoms. No frequency, diarrhea, bleeding, pain. Some of us still go more frequently than pre-IBD, but that may be because our bodies have taught our brains that trying to wait can be disastrous.

4. I'm sure others will respond. It has gotten a lot of people into remission.

Regarding the Prednisone: I was on Pred and then Entocort, which was "supposed" to have fewer side effects. Steroids can affect your vision, be sure to let your GI know about this symptom.

1. I developed type II DM while on steroids.

2. It was very mild, and managed with slight diet modification and exercise. It did go away, but your glucose is higher than mine. When my doctor rechecked three months later, my blood sugar and hemoglobin A1C were both in the normal range, and have been since then. Since getting off the pred, I've relaxed my diet somewhat, and both remain normal.

Steroids are recommended for short-term use. The long-term side effects can be very nasty.

There are several vegetarians on the board. You may want to post a new thread specifically addressing them to get more responses.

I hope you find the right combination of meds for you soon, so you can feel like getting back to your life.

 UC Forum Moderator
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.

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