Hi, Hope you are all doing OK. I can’t believe I'm here really, but by this us my story and would love to chat to others who share a similar experience.
I was diagnosed with ulterative colitis in 2012 and was put on Azathoprine which worked - happy days. However, recently my blood platelets dropped so I was given an ultrasound of the liver which revealed stiffness of the liver 10.9 and some scarring. Anyway I then had a liver biopsy which sadly revealed Liver Cirrhosis!! Im still in shock to be honest as the consultants believe it’s from taking the azathoprine (I don’t drink, drugs etc etc).
I feel my world has been turned upside down and I don’t really have any answers (how long do I have to live!) as I’m waiting for the consultant to speak to liver specialists in Birmingham to view my case. I’ve had lots of blood taken and all look ok. Although I’ve been told I will have to be have an ultrasound every 6 months to test for liver cancer. All overwhelming so if anyone has ever taken azathoprine which caused liver cirrhosis I’d love to hear from you. Also anyone who could help share advice x
love to you all
bucket x
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Bucket13
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Hi Bucket, try not to stress too much. If the cirrhosis was caused by the Azathioprine, then removing that and switching to another should help limit or slow further damage.
With UC, there could be other relationships they'll probably investigate too. PSC is often correlated with IBD, so they may check for that, to rule it out if nothing else.
Try also not to over think mortality either. In truth no one can really tell. You liver, even damaged could continue to work for many years, even decades, if whatever was causing the damage is removed or reduced.
Hope that provides a little reassurance. Good luck to you.
thank you Kristian, always helps to chat to others. And your words are very comforting and reassuring.. Hopefully I will hear from my liver and stomach consultant soon and have more answers.. And yes I’ve been off the azathoprine since January, and am now on steroids which also work but I can’t stay on these much longer so hopefully they will find something else to treat the ulcerative colitis too.?!!!! Lots of meds didn’t help in the past, so fingers crossed they find something that does but doesn’t affect the liver!!! I have heard of PSC so I have already asked if they have checked for this too.
Thank you so much, I will read other people’s stories too. Becky (of the liver nurses recommended I get advice on here)
Always feel to free to ask any questions you like. It can be a bit daunting at first, but as knowledge creeps up you can better prepare yourself for any of the eventualities, and its not all doom and gloom 😊.
Hi there Bucket13 my story is different because my cirrhosis was alcohol my fault just a bad decision when young, but on the problem of how long will you live I’m not a doctor but I lived with cirrhosis for 20 years until I got my transplant so please don’t panic 😱 the doctors are very good these days. Good luck on your journey I hope it all goes well.
I had a transplant due to PSC. My initial post TX medication regime was Prograf and Azathioprine. Seven years later I was diagnosed with PTLD. Prograf and Azathioprine were ceased whilst undergoing Chemo. When Chemo had (successfully) run it's course, Prograf was restarted but Azathioprine was not. Now, another 10 years on , I just take a minimal dose of Prograf only.
At various times my clotting factors and neutrophils have all but disappeared but seem to recover on their own. No one has been able to explain why.
Although, our histories are not quite the same, the doctors are very skilled at diagnosing and treating liver diseases and the human body is quite resilient at coping with stresses. You are in good hands, I am sure they will find a way to keep you healthy although there maybe a few bumps along the way. Good luck.
yes. I was on Azathioprine for auto immune issue. Regular blood tests for 10 years as a side effect is liver damage. Then out of the blue someone noticed a change went for liver scan and I was at stage F4 that was in 2019. Like you I don’t drink or smoke although my diet wasn’t the best, I changed my life around. Strange as this may sound I had cabbage and broccoli at every meal. I’m not saying Cabbage is the answer but at my last scan they couldn’t believe it. It appears that I have managed to stop or at least slow down the bridging, and reduced the risk of cancer by 33% It is terrifying to be told you have cirrhosis it made me re-assess a lot. Work on not making it worse and it can improve. I know there is permanent damage but hopefully I can continue keeping the healthy liver healthy. Try not to worry too much you can continue to enjoy a long happy life by making a few changes. Take care x
hi Katie do you have information about antidepressants causing liver disease. I smoked and drank and was two stone heavier -my liver ultrasound was normal. Now I have changed to a healthy lifestyle and my ultrasound shows fatty liver. The only thing that it could be is antidepressants-have you any advise please xxxxx
"Azathioprine is a medication that is commonly used to treat inflammatory bowel disease, autoimmune diseases, and as an immunosuppressant in transplant patients. Like any medication, azathioprine can cause side effects, including liver damage, although this is relatively uncommon.
Studies have shown that azathioprine can cause liver injury in some patients, ranging from mild elevation of liver enzymes to severe liver damage, including cirrhosis. The risk of liver injury appears to be higher in patients who are taking high doses of azathioprine, have pre-existing liver disease, or have a history of alcohol abuse.
Overall, while azathioprine can cause liver damage, the risk is relatively low, and the medication is generally considered to be safe and effective when used appropriately under medical supervision."
Hi Bucket, any new diagnosis can be scary, especially when you’re in limbo waiting for consultants appointments. My Mum had cirrhosis and was told she had 2 years to live (back in the 90s) but she lived for over 20 and outlived my Dad who didn’t have cirrhosis.
I’m on azathioprine myself for autoimmune hepatitis, so the risk of liver damage from it must be low if they’re using it to treat a liver disease. Sounds like you were very unlucky if that’s the cause of your cirrhosis.
Top tip that you will see a lot on here - Don’t Google! The British Liver Trust has excellent information once you know what you’re dealing with, and an excellent helpline.
Nice to hear from you here. I am on Azathioprine, which I have been on since 2019 for Crohn's Disease then 2021 I was diagnosed with Cirrhosis of the Liver. I am receiving blood tests every 6 months for taking Azathioprine to check all is okay, my fingers are crossed they are so far. I am also tested every 6 months for blood tests for my Cirrhosis and seeing my consultant every six months and I feel confident they are doing all they can. Funny enough, I saw my liver consultant yesterday - yes had blood taken and I am going to have a CT scan soon, so I feel I am being looked after quite well.
I am also a member of our local liver group which really helps as we discuss any problems or help with what works diet wise etc. I would suggest you see if there is a local liver group where you live.
Good luck and keep coming back here and please do not use Dr Google.
hi mick, sounds like you are being closely monitored which is good and have people to talk to that can help you. I think that’s half the battle really, sharing experiences and giving each other advice keeps our spirits up and gives us hope. I’m already feeling more positive since joining this group and I’m going to cut out sugar too as I do have a sweet tooth and eat more vegetables too
Yes I am lucky to be kept an eye on as they say. Have a look to see if you have a group in your area you can join. The liver group where I live meet every other month via Zoom, which means you can chat and get advice without leaving your home.
I am lucky, I do not have a sweet tooth, so good to see that you accept you have one and that you are going to look at ways to cut this out.
My liver enzymes showed slightly elevated in a blood test when I was 20 years old so they did a liver biopsy and it came back showing my liver was fine. (What I now know is the liver biopsy takes a small piece from the middle of the liver) and that portion of the liver was good. My liver enzymes continued to show slightly elevated for several years and the doctor said that was probably my norm because the numbers never got higher or lower. I lived a normal life no worries. 17 years later I complained to my doctor I could not take a deep breath any longer. They did an ultrasound and saw that my spleen was enlarged and laying on my lung so they had to remove it. I was told our spleen is about the size of your first and is the first filter for our blood. My spleen when removed was the size of an American football. So they send me to the hematologists to look at my blood and figure out what happened to my spleen. The hematologists found nothing wrong with my blood except liver enzymes slightly elevated but that would not blowout the spleen. So they did another liver biopsy and that showed the liver was fine. I could now take a deep breath and got back to busy on my life's road. 10 years later (27 years after I was initially told my liver enzymes were slightly elevated) I got a sharp pain in my back and was told to go to the emergency room. They did an ultrasound and said I had a gallbladder attack due to gallstones and my gallbladder would need removed. I went home and back to work and called the doctor for the date the gallbladder surgery would be done. I went for surgery about 1 month later. I woke up in recovery with the surgeon standing at my bedside. First words out his mouth was "We did not remove your gallbladder, we go in with a camera first and saw you are in Stage 4 liver failure". The surgeon handed me 4 pictures in color 8X10's of my liver. I asked what happened to stages 1, 2 and 3 and why don't I know I'm sick. He said I needed to see a Gastroenterologist so I did. He said yes those pictures definitely show your in stage 4 liver failure I think you probably won't live six months. We need to refer you to the liver transplant clinic. I still feel fine, full time career, raising a child, living live to the fullest. Only sick days where the things I mentioned previously. I go to the transplant clinic appointment, still feel great asking why do I know know I'm sick and you only know because I'm showing you pictures of my liver. They couldn't answer me just repeated liver enzymes as slightly elevated. They do explain the liver continually healing itself until it can no longer do so. I ask when will I know that I am sick? The doctor replied, "one day you will wake up and your whole world will change". 3 years later that happened (30 years from the time I was first told the liver enzymes were elevated was when the cirrhosis started) but nobody used the word cirrhosis. In 2010 I was at deaths door (still working and living my life) I came home from work for the first time because I was exhausted and when I walked in the phone was ringing, it was the transplant clinic calling to tell me they had a cadaver liver for me. Someplace there was someone laying brain dead who's family wanted to donate the organs. I was told to stay by the phone and the hospital would be in touch because surgeon team needed to be assembled and operating rooms available because every organ has to be transplanted within a set amount of time and all this persons organs were being donated so that meant one hospital would be removing all the organs one after the other and being life flighted to different hospitals to be transplanted into the recipient's. I got the first call at noon and surgery was schedule for me at 1:00 a.m.. I am not 12 1/2 years post transplant. I credit my amazing life to not worrying over what I personally couldn't fix, and trusting God had my back. I just kept on living not thinking, why me, what if or any of t6he other awful thoughts our brains and the internet feed us. Your liver can heal itself for many years, live your life but be aware of health issues that pop up if they do. Eat eggs which are full of albumin, drink plenty of water and remove any risky behavior if there is any. You can do this!
yes, 30 years after I was first told I had the liver problem which showed in my blood. My point is don't let the words and fears stress you. The blood test don't tell the entire story. The worry does damage to your overall health.
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