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Prescribed Prednisone When NOT in a Flare

My name’s Tom.
I’m 23 from Northampton, UK and was diagnosed with left sided UC in May 2011 after experiencing symptoms for a number of years prior. Hobbies include, biking, walking and photography
My Symptoms:
Currently have no symptoms and am still taking 2400mg of mezavant daily since being diagnosed
My Story:
After being diagnosed in May 2011 I was prescribed 2400mg of Mezavant daily and for 10 months this seemed to keep everything “in check”. No symptoms apart from gurgling belly and wind but I think these had more to do with the Mezavant rather than UC itself. Around March time I began to experience my

Tom from Northampton in Egypt

Tom on his trip to Egypt

usual symptoms, 20+BM movements a day, severe diarrhea, urgency, lots and lots of blood, fatigue and generally feeling down. These symptoms started 2 weeks before I was due to fly out to Egypt. My girlfriend was happy to cancel the holiday but I was hoping it wasn’t going to come to that. I slowly started getting better after speaking with my Doctor and upping my dose to 4800mg and using Colifoam enemas for a week. I got better and decided I would be fine to go on holiday to Egypt providing I didn’t indulge in any spicy food or anything uncooked not washed with mineral water from a sealed bottle. Anyway, went on holiday and apart from about 5-10 watery BM a day (without blood) I got through it OK and didn’t experience anything nasty. Came home and in May went to see my Consultant Gastroenterologist who wanted me to go for a colonoscopy for further investigation and if I experienced any further flare ups to take 40mg a day of Prednisolone for 5 days.

While at the hospital I asked the Doc about giving up smoking and whether I would experience any problems as I have read some stories about people using cigarettes to stay in remission. He said I may have a flare up but I would get through it. Two weeks later after I had run out of duty free cigarettes I embarked on kicking the habit. Two days after having my last cigarette I experienced one of the worst flare ups I had ever experienced. I got prescribed Prednisolone and after taking it, within 4 days I was on the mend. Haven’t touched a cigarette since (5 weeks now) and am petrified that if i start smoking again, at some point I would have to go through another awful flare up (which i would have caused without a doubt).

Went for colonoscopy which was an interesting(not in a bad way) experience. Will have to write about it another time.
Letter dropped through the letterbox today which was addressed to my Doctor as it was CC’d for my info. It said the colonoscopy showed “moderately active colitis in the rectum and sigmoid and mild colitis from the descending to the caecum. Kindly start him on a course of Prednisolone 40mb o.d/2wks reducing by 5mg/wk and i’ll see him in the clinic soon”
Has anybody been prescribed steroids even if they aren’t currently experiencing any symptoms?

Where I’d Like to be in one year:
In remission and without having to take too many drugs and not having to worry what the future might bring.
Colitis Medications:
Mezavant seemed to work for me for a time but for past 4 months have had a number of flare ups. Quick 4 day dose of prednisolone seemed to sort out my latest flare pretty sharpish

written by Tom

submitted in the colitis venting area




cigarette, mezavant, Northampton, prednisolone

7 Responses to Prescribed Prednisone When NOT in a Flare

  1. Natasha B July 2, 2012 at 5:20 am #

    I was on prednisone for almost 5 months. Started while in a flare, but continued with it to help prolong the remission.

  2. Tony (UK) July 2, 2012 at 2:16 pm #

    Hi Tom, I was proscribed 40mg Prednisone and 2400mg Mezavant XL after being diagnosed with UC 2+ years ago. Later my doctor also proscribed Predfoam as the bleeding refused to stop, it did the trick but I continued on Prednisone for over a year and am still on 2400mg Mezavant XL. I did have one point where the Mezavant was increased to 4800mg on advice from my IBD specialist nurse due to traces of blood beginning to show but after settling down, returned to 2400mg. I asked my doctor if I could ever come off Mezavant to wit he replied ‘no chance, I can tell you what would happen straight away, you will have a flare’ which came as a bit of a shock, he also added ‘you are on them for life I’m afraid. I don’t think a doctor would proscribe Prednisone i.e. steroids unless you are actually having a flare, I can see no point as the side effects could be just as bad as the flare itself. Ps. I know Northampton well, Greens Norton in particular, a really beautiful part of the world.

    • Tom
      Tom July 4, 2012 at 2:19 pm #

      Tony

      Apparently, unless there is no inflamation present anywhere in the colon, as showed by a colonoscopy, us UC’ers are at a much higher risk of developing Colon cancer in the long term wich is why i have been prescribed prednisolone to hopefully address the underlying inflamation even though i’m not experiencing any symptoms. I also realised the other day that i have been experiencing UC type symptoms since at least 2005 so i’m not far off the 10 year anniversary which puts me at higher risk of CC than somebody who first got ill recently. Nail biting time but we should all soldier on.

      Small world that you know Northampton. It does have its fair share of nice spots.

      Good luck

      Tom

  3. Maggie July 2, 2012 at 4:12 pm #

    Congratulations on quitting cigs. I quit 3 times long term and every time had a flare, the last 2 being the worst. It’s been almost 3 years now. Nicotine helps colitis for some reason but I will never smoke again. I’ve heard that nicorette gum may help or the patch but I don’t want to use them. Prednisone is an anti-inflamatory so when not in a flare there’s no reason to use it, there are bad side effects from prednisone and long term use is not good. That’s so cool you got to go to Egypt. Good luck to you, Tom.

  4. UC Family Boy
    uc family boy July 3, 2012 at 9:08 am #

    Tom,

    Small world man, I have a house in Northampton. I think if your prescribed Prednisone I think you might be in a flare up…There must be inflammation if from the scope they concluded moderately active colitis but I could be wrong. I just got back from Rome for my Birthday. The first day I saw blood for the first time since taking Prednisone 4 or so months ago. And this morning being the first day back there was some blood..I think but it wasnt as pronounced as when in Rome. Interesting how this was on the days I left and came back but fine inbetween. Anyway I guess what I am leading to is, I was hoping the Prednisone had got the inflammtion down or gone, I only been going once a day with solid stools for months but there was blood in Rome (that sounds like a title to a movie,hmmm.lol) so there must still be inflammation. I don’t have any symptoms but feel down seeing some blood. I also got the stomach gurgling and if I was to listen to my body it just don’t feel right. I thought maybe im out the flare (this is my first ever one and just diagnosed)but 4 months later I could be back to square one and feel down. Has anyone else experience occasional blood but with solid stools?

    • Tom
      Tom July 4, 2012 at 2:26 pm #

      uc family boy, blimey it is a small world.

      Sad to hear about your current symptoms. I would like to say don’t worry but might be worth a trip to the doctors just to be sure.

      Blood with solid stools in my opinion points more to local bleeding as Adam’s recent post said his GI doctor said us UC’ers tend to use the toilet more often than most.

      Good luck

      Tom

  5. Kasey July 3, 2012 at 7:45 pm #

    Hey Tom,
    I am on steroid and am not currently in a flare up, but I did have one recently though so………

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