Medication Dilemma


Hello everyone
My daughter Amy has UC
I hope some one reading about this dilemma will be kind enough to write and give my daughter their thoughts on this problem

Medication Dilemma

My daughter was diagnosed with Ulcerative Colitis last year and was prescribed Pentassa. She was well and active working full time and eating a normal diet when she developed symptoms and had a severe flare up and was admitted to hospital. She was given intravenous prednisolone and azathrioprine for ten days and told if there was no improvement the next option was surgery.

We researched and read many books about UC and then found this wonderful informative and supportive site and the SCD diet. Amy is still taking her decreasing dosage of prednisolone and is now on 10mgs daily along with 50mgs azathrioprine and Pentassa daily. She finishes the prednisolone in two weeks, She was told 2 weeks ago that she should increase the azathrioprine to 200mgs daily which she should take long term. She is only 5′ tall and weighs under 8 stone!. She was told if she does not increase the azathrioprine she will probably have another severe flare up again. Also she was told azathrioprine was safe to take long term and also if you were pregnant!! She is now so anxious she is considering taking the Pentassa and reducing the azathrioprine to 50mgs for 3 months and then trying to decrease it slowly.

She is staying on the SCD diet. Her last endoscopy whilst she was in hospital showed she had stage 1 UC. She is working full time and has resumed her previous social life. She does feel tired at times but has no other physical symptoms apart from a a little bloating in her abdomen. The SCD diet is no problem apart from our inability to make bread – the ones I have baked are dreadful even the birds will not eat them !!

If anyone could take the time to give us their thoughts on this problem we would both be very grateful and appreciate it very much!

Many thanks
Tricia x

5 thoughts on “Medication Dilemma”

  1. Hi,
    Great question,
    I too was on Azathioprine (4 daily). I had to have blood tests every month to monitor how it was affecting my body. Make sure these tests are happening. I’m sure they are but thought I’d better mention it in case they weren’t. I don’t want to scare you but some (few) people can experience negative side effects from this drug. These blood tests will pick up anything untoward. You need to monitor at least Full Blood Count, liver, renal, CRP, and ESR. B12 and ferritin can’t hurt while you are at it. Pentasa is an anti-inflammatory that is only activated in the colon and in testing they gave massive doses (kilograms) to pigs without apparent ill effect. I take 10 per day.
    I’m not a doctor I just was on Azathioprine for some years and have had UC a lot. I have now stopped taking it and have been prescribed Methotrexate.
    The purpose of these drugs are to “spare” the use of steroids (e.g. prednisone) to control colitis long term. Long term use of steroids is discouraged by the medical profession and it is easy to find examples of effects of long term use (some of which are reversible some aren’t).
    I have heard of success stories with Azathioprine; just make sure you monitor with blood tests.
    I’d suggest talking to a specialist if you wanted to get pregnant whilst on Azathioprine.
    Good luck,

    1. Hello Peter,

      How long were you actually on Azathioprine ??? Bouhnik et al reported that the beneficial effects disappear after 4 years of Aza treatment, based on a small number of patients. However English studies found that Aza sustains remission for at least 5 years !

  2. hello Tricia,
    i hope your daughter Amy finds something that works for her and stay in a long term remission. Azathioprine which is also called imuran is a drug that basically shuts off our immune system so that it does not attack our colon. I just started taking it a week ago and thats because i had a hard time getting off prednisone. Everytime i went below 5mg my symptoms would slowly come back. I just had some bloodwork yesterday to see if Azathioprine is sitting well with my other organs. I heard it takes about a couple month to show its full effect. I hope it works for us because its something we can take long term with regular blood work. And i am not really experiencing much side effects other than some nausea and a cold like feeling which is not too bad so far. Your doctor probably asked you to increase the dosage since your daughter is tapering the prednisone. The only other thing my doctor told me was that it kills fertility in men , but its only while we take the medication. Best of luck to you and if u have any other concerns just write this is a great website.

  3. I have struggled to get control of my UC, for almost a year. My Consultant wanted me to go onto Azathioprine which I resisted due to all the negative stories I heard and side effects.

    It eventually got so bad I had no real option. I am currently on 100mg of Azathiorpine which was increased from 50g initially. I am 5ft 10, just to compare my dose to your daughter. I would question being increased from 50mg to 200mg. Why not increase slowly, surely that would make more sense? I also take 5mg of prednisolone- long term and 4800mg Asacol.

    Now I am 3 months into it and I am almost normal, I was told it would take 3 months to kick in. UC no longer controls my life. I have blood tests every 2 weeks with no problems. I had minimal side effects I felt sick a little.

    My dad was prescribed Azathiorpine and had a terrible sickness as a result, and had to come off it.

  4. Hi Tricia,

    Your daughter’s Azathioprine dose rate does seem to be very high in relation to her body weight.
    I am almost double her weight and on the 4 x 50mg dose rate. I am also on 8 x 500mg Pentasa and have not been on any Steroids since 2009 when I was diagnosed with UC. English studies finds that Azathioprine sustains remission in UC & CD for at least 5 years . I wish her all the best !

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