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Ulcerative Colitis
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Posted 9/26/2011 2:27 PM (GMT 0)
It appears that I am in a flare after tapering all the way down to 10mg of prednisone.  I've had 3-5 loose/diarrhea BMs per day, a pain in my left side and alternating fever/chills for the last two nights. No blood in the toilet yet.

 

 I am 6 weeks out from my last Remicade infusion and have to wait another two weeks for the next one. I just recently started 50mg of Imuran.  I'm hoping to get this flare under control and will be calling my Dr later today for his advice.

Should I ask for Steroid Enemas to help get this under control?  Currently, I am using nightly Melasamine enemas but they don't seem to be working to get it under control. Is there anything else I can ask for to help? 

Posted 9/26/2011 3:35 PM (GMT 0)
Indy, I don't think steroid enemas are a bad idea at this point. One thing I would like to mention is that 50mg of Imuran is a very low dose, most people are on about 150mg. Do you know why you're on 50mg? When did you start Imuran? Did you feel better right after your Remicade infusion? Some people require more frequent dosing.

I had the same thing happen to me after I tapered down from prednisone. I was up and down, had to start 6mp and still wasn't stable. At 15mg, I was so scared to taper because my condition was too fraglie. I stayed at 15mg for a while and continued 6mp, eventually I was able to taper off but I had symptoms the whole time. I felt like a ticking time bomb. How long have you been on predenisone? I was on it for way too long and I wanted OFF. I was at the point where I was tapering off regardless of symptoms, luckily, they stayed at bay, not 100% but decent.

Sometimes we notice symptoms appearing a day or two after a taper and they can stabilize. 3-5 loose movements a day is worrisome.

If you have anxiety, I recommend seeing someone and getting treatment. I started Pristiq and that's when I noticed my condition really improving. Since about 2 weeks after starting it, I no longer had symptoms. I am not sure why this happened.
Posted 9/26/2011 5:24 PM (GMT 0)
Just out of curiosity, is there a type of steroid enema that is different from the Cortifoam cannister types? Those are extremely expensive on my insurance and never seemed to help me.
Posted 9/26/2011 5:34 PM (GMT 0)
Hi Notsosicklygirl-
I just started Imuran last Wednesday to help maintain the effectiveness of the Remicade. I took it once before and didn't think I tolerated it very well but my GI convinced me that my symptoms were probably due to the flare I was going through at the time, so we are starting low and working our way up gradually.

I've felt somewhat better right after the remicade infusions. The nurse from my GI's office I spoke with earlier today said they might move up my infusions to every 6 weeks.

I've been on pred since March of this year. I had an unsuccessful taper earlier in the year that resulted in a bad flare that sent me to the hospital for a few days. This is the lowest dosage I have been on since my diagnosis in March.

I don't really have any anxiety issues on a day to day basis other than when my UC takes a turn for the worse.
Posted 9/26/2011 5:41 PM (GMT 0)
Have you tried any alternative treatments? Or are you just taking meds?
Posted 9/26/2011 5:51 PM (GMT 0)
Just taking the meds at this point but I'm open to trying anything.
Posted 9/27/2011 1:42 AM (GMT 0)
my suggestions:

diet - cut all grains, milk products and all forms of sugar, they feed the bacteria. just chicken soup/broth, cooked apples, green bananas. No alcohol especially red wine.
I'm in remission and take 4 VSL packs/day. 1/2 pack is not enough
I didn't have a lot of luck with Lialda but doing great on sulfa.

please read the threads re: antibiotics, LDN, natural supplements. I felt great on antibiotics and replaced them with "natural" antibiotics (propolis, lactoferrin, grapefruit seed extract)

http://www.ncbi.nlm.nih.gov/pubmed/21919840

http://www.ncbi.nlm.nih.gov/pubmed/21799877
Posted 9/27/2011 1:49 AM (GMT 0)
Alba, I see that you take 4 VSL packets and that's the recommended dose for someone with active colitis. I only take 1 a day but think I should take more while attempting my prednisone taper. Do you split your packets up throughout the day? Right now, I take 1 packet in the morning before I eat.
Posted 9/27/2011 1:53 AM (GMT 0)
Yes, it's safe and has no side effects. I take 2 with my homemade SCD yogurt in the morning and evening, and wait 2 hours after or 2 hours before the sulfa because sulfa is an antibiotic. I'd rather take max amount of probiotics than go on more or stronger medication


bananagirl said...
Alba, I see that you take 4 VSL packets and that's the recommended dose for someone with active colitis. I only take 1 a day but think I should take more while attempting my prednisone taper. Do you split your packets up throughout the day? Right now, I take 1 packet in the morning before I eat.

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