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2 years in and fed up.....advice & experience on aza and pentasa!!! :-(

Hi,

I am Hannah, I am new to the forum but have been reading and taking advice from different posts for a long time. I have now decided to stop just reading and get involved (so fed up of moaning to family!!!).

I have been diagnosed since 2011, I had a stint in hospital and once my disease had stabilised on steroids I was moved onto just pentasa. Shortly after I had another major flare and was put on to imuran (75mg) as well as the pentasa.

Since the beginning of taking imuran I have experienced extreme tiredness, muscle and joint aches. 6 months into the imuran I visited my dr and he increased my dose to 125mg. In the last month I have had enough of being tired and weak so complained to the dr AGAIN, he tested my 6-tgn and 6-mmpn for the first time since taking the medication. My 6-tgn was 753 (normal range 235-450) and my 6-mmpn was 9732 (normal range around 5700). I was asked to stop the medication for a few days and then start again at a dose of 75mg - 2 weeks later I am still left with extreme tiredness, weakness and aches and pains. I have been told to stop imuran today and have another blood test in a week before seeing dr a few days later! I am just so fed up of feeling this way, I'm 27 and would like to start a family in the next few years but at the moment can barely keep myself awake!

Has anyone else had a similar experience? One minute I am being told my symptoms do not relate to imuran then i read online they can be a side effect. I am so confused and concerned.

Sorry for the long winded post - any help would be much appreciated :)
 
My son is in remission, yet he gets little aches a lot and often has extreme fatigue. He only takes Pentasa, no other drugs.
 
I think that he thinks my son is doing fantastic, relative to his other patients and sees his complaints as minor and to be expected, basically.

They don't understand this disease.
 
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