Newbie - taken of azaphoprine cause of liver scarring :(

Hi I’m a newbie so good to see so many others going through similar and how you support each other is heartwarming.

I was diagnosed with UC approx 10 years ago and after being hospitalised for a week on an IV I was also given azaphoprine 50. And I felt great and had 90% control of my bowel. Happy days

However, recently my white blood cells are lower than they should be so referred to a liver specialist who confirmed my liver was starting to have scarring and felt hard.

Therefore, the consultant and my gp have taken me off azaphoprine and tried other meds - sulofalk granules - no response and Octasa 3 tablets twice a day again no response. Now it is affecting my quality of life and I’m starting to feel will I ever be OK again?

Today I have started an oral steroid and later a steroid enema which I am anxious about. I hope this gives me more control, but this is only temporarily until my next liver appointment (6 weeks) where they will find what meds is best for me?!!!

I want to go back on the azaphoprine as now I am on the toilet constantly.

Any advice would be greatly appreciated.

Sorry that you have this complication disrupting your life after several good years. The human liver is a vital organ so you definitely need to get off a UC med if doctors find it is causing damage there. Try to stay calm and positive that you'll get through this tough spell soon with adjusted Rx treatment. In the meantime, investigate some diet modifications which might help you reduce increased daily bms-- such as avoiding caffeine, heavy salt, sugar, or spices, carbonated drinks, raw produce, and fatty foods, nuts and seeds. A lower fiber diet including BRAT (banana, rice, applesauce, toast) + lean poultry or fish without skin might help you to keep up your strength while avoiding excessive weight gain that steroid meds can induce. Best wishes for you to overcome this setback in good order. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Sorry to hear you are struggling. I know it's hard right now, but please know that your life is not over. There are options for you to get you well again. There are a lot of drugs available to treat UC. Azathioprine is known for risks to the liver. I was not able to use it because it increased my liver enzymes too high. I haven't had that problem with biologic meds. There are other newer meds too. I don't know if they all have liver risks and since you already have liver damage I am not sure you would be able to take them. Do your own research so you can discuss the risks with your doctors. Some people are able to find relief with alternative treatments such as supplements and diet modification. But if all else fails you could have surgery and have the colon removed. This sounds extremely scary, but people who have had surgery said it gave them their lives back.

Prednisone and rectal meds should get you functional and give you time to research your options. It's not ideal, but sometimes you just have to take them. What dose of prednisone are you on? Usually UC patients start at 40 mg/day and slowly taper over several weeks. Last time I had a bad flare 40 mg wasn't doing anything and we went up to 60 mg and that kicked in almost right away.

You will need to advocate for yourself and find doctors you will work with you. If the pred doesn't start working soon, contact your doc and let them know how you are doing -- I used to send messages to my doc's patient portal and gave them details such as number of BMs/day, blood, diarrhea, urgency.

You said that aza worked "90%" so it doesn't sound like you were ever in complete remission. Don't aim for "better". Aim for completely well. It's possible. If your doc won't work with you, can you find another? In the U.S. we can move to different docs when we want to, but I don't know how that works in other countries.

This forum contains a vast amount of info on all the options I mentioned above -- you can scroll through the pages and pages of posts or use the search feature. Hang in there. You are at the right place to get info that will give you hope.

Lilmissmischief said...
Thank
You.

I’m really struggling, told my partner it’s best we spit up as I can never go on holiday again, have sex or even walk the dog as I constantly need the toilet and there are always so many other girl’s around which I’m sure he will have a better life with than he would with me now.

I don’t know what the do if they can’t find anything like azaphoprine that does work
For me as so far the others meds haven’t!

Don't give up. There are a lot of other medications you can try that actually have a better safety profile than azathioprine. The steroids should give you relief quickly, but they aren't a long-term med. I would think your gastro doctor would be starting you on something else as well, such as Remicade or Xeljanz. You will definitely be able to live your life again.