Does this sound like ongoing inflammation?

Hi all, Hoping for your thoughts….

I have been on azathioprine since the end of August. The rest of my body feels well now which never used to be the case and both urgency and pain are much less but still there a bit, pain more so. For about two weeks, there was an overlap of steroids and Aza and I felt stronger than I do now even though I am generally much improved on how I was before. about 10 days after stopping steroids, I started with an increase in a feeling of being over full and bloated in the evening and morning whereas before, when I was also on steroids, it felt stronger. I would blame IBS now if I hadn't experienced the steroids too. I have been very ill over 4 years and maybe just need longer to recover but the hospital nurse is suggesting that the Aza can't be working.

I only have 2 BMs a day, no blood or mucus and as I say the urgency is reduced. He wanted me to stop enemas and suppositories but at best I can reduce them to one suppository a day and even then the burning starts so I know I am already pushing my luck and any less would be a mistake.

I am only on half a dose of Aza because I have low TPMT and for me that is meant to be the same as a full dose. He says I am at full therapeutic dose and will not see improvements any further over the next months. He suggested using prednisolone enemas again when I said I am not as good as I was using steroids as well but I am not actually flaring and otherwise don't feel ill. Aghhhh! He is talking about witching me on to injections but this does not feel necessary to me especially when I have seen a good improvement.

Thanks

Thanks

Hi iPoop, I am going to sort the FC test although my faith in them is less since a test just before Aza was only 35 but I was flaring with that sickly UC flare feeling, blood mucus, urgency etc. I am just so exhausted with all these tests.

Hi quincy, hope you are well. The nurse is convinced that if someone is on azathioprine they shouldn't use rectals because the aza tablet should cover the area anyway. I don't agree with him and he is alarming me by saying that if I need both then the aza is not working. I am hoping he hasn't learned that approach from the consultant. It's a new hospital and apart from that they have been brilliant. I am seeing the consultant next week to discuss how aza is going so I will be doing my best to persuade him to carry on prescribing suppositories and enemas.

Thanks for your encouragement. I am now wondering if reducing suppositories from 1 to 2 a day is actually causing the current issue as I was also using two suppositories a day or supp/enema when taking steroids and feeling better than this. The general feeling of otherwise being well would fit in with your thoughts about it being reduced to a proctitis issue.

I am not too sure. He said add prednisolone enemas for a week but I would rather save those for when things are worse and use suppositories twice a day. I can tell that I am not on the verge of bleeding etc and it is really mild/low down. He doesn't seem to have given me long on the Aza before expecting they should be able to do everything as it is only 9 weeks since I started those tablets. He says I am at "full therapeutic levels" according to my blood tests which I don't really understand and will need to ask about.