Bless you darling. Thank you so much for sharing your experience. I was diagnosed with AIH back in April. Started the Prednisone and ALT levels returned to normal until I caught a cold a month ago and ALT levels went up again and now back on a higher dose of prednisone and tapering off again but the Dr. says I need to start Azathioprine in January and stay on it long term. I didn’t know my cold is what triggered it. I was feeling so depressed since my diagnosis but you have given me hope. I need to think positive and keep going.
Wow your amazing. I’ve just watched your 3 part video and found it very helpful and informative. I am a 46 y old man and just been diagnosed with AIH , I’ve been on my steroids a week and have noticed my appetite has definitely increased! I was perfectly healthy up until March when I developed jaundice and fatigue. But I couldn’t get treatment or a biopsy because of the Covid pandemic. I don’t know how much my liver is damaged or much about the disease but thanks to you I will now as my consultant more questions. Your outlook on living with AIH is inspiring. Thank you
You are amazing. Thank you so much for relating your story and updating us. My girlfriend was just diagnosed with auto immune hepatitis. We are reeling from this and trying to find balance again. She is in the early stages of being diagnosed and just started on medication 5 days ago. I'm going to keep your example in my mind and try to be a calming and helpful influence to her. Thank you so much for your video.
Thanks Kevin. I can totally relate to your girlfriend and my heart goes out to her. Please keep in mind that time is a great healer - I know that is easier said than done, but it takes time to get a new normal. I was really all over the place for the first year or so after diagnosis, crying all the time - but then I got over it and started enjoying life while I could :). Take care xxx
Kirsty, thank you very much for sharing. I really appreciate it. I was diagnosed with celiac disease, PBC, and AIH in one day! I was doing endoscopy & colonoscopy bcs I had some GI problems. So we discovered the liver diseases by a coincidence from blood results. I received my liver biopsy results yesterday, it seems that I have AIH & PBC. I’m yet to meet with my doctor. My feelings are numb so far, however I get terrified every time I think of taking prednisone and steroids.
Aw man it sounds like you have had a right bad time of it :( What a shame. I can only say that time is a great healer and it will take a while to process your diagnoses. Don't be scared of taking steroids. They will save your life and you won't be on them high dose forever. Take care, and any questions, give me a shout. xx
I was just diagnosed with Scleroderma early last year, a rare autoimmune disease, the official name that I have is Systemic Limited Scleroderma aka CREST. That's a mouth full! I was also tested for a multitude of other diseases. So along with the scleroderma, I have anticardiolipin antibodies(blood clotting disorder) and asma(anti smooth muscle anitbody) which is a liver test. My doctor wasn't too worried about the asma because it was a weak positive. I was just tested again for the asma and it came back as a strong positive! I am totally heartbroken. I don't really have any symptoms of it, I believe, because I have scleroderma it is hard to tell which disease is causing gi problems at the moment. I go to see a hepatologist next week to see what I need done and what the treatment plan is going to be. I have found your videos most helpful and comforting. My family has been very supportive and I am very grateful because of that. I hope that all stays well with you.
Hi, I'm really sad to hear your story. I hope that you get some answers from the doctor and can get your problems eased soon. I'm glad you have found the videos helpful. Take care xxx
You are very inspirational. Compared to what is going on with my liver, I feel bad for worrying so much. While I have no diagnosis yet, your story gives me hope.
Aw thank you! I think everyone is entitled to worry but try not to let it get you down too much if you can. There is something positive to be taken from it, even if it's just appreciating days when you feel good! The positives just might not be immediately obvious 😉 hope you keep well xxx
Would you mind sharing a little about any side effects you might have had from taking the imuran medication and what dose you need to take, my 20 year old son has been recently diagnosed with aih and has developed a bad skin rash on his face since taking the imuran
Hi! I tend to run really low on white cell count when I'm on azathioprine. It's a constant battle between getting enough immunosuppression to avoid liver flares, and not destroying my bone marrow too much. I've also got really thin hair after using azathioprine, but don't have any rashes or any other side effects. Hope your son improves soon xx
Hi thank you for your story. My bloodwork currently shows very high amounts of liver enzymes and a low titer for lupus. Had an ultrasound done that was normal. I'm currently waiting on genetic testing results and next week i have a biopsy. My doctor believes I either have Wilson's syndrome or autoimmune hepatitis. I'm almost 100 percent sure it's autoimmune hepatitis. I'm scared but also looking forward to finally being cured as this has been going on for years and doctors just kept saying stop taking Tylenol, bc powder, etc. They didn't know what was going on as my enzymes would be high one week, then normal the next. Also, I'm in university studying genomics and molecular genetics and am trying to make a possible link between certain genetics and autoimmune diseases. If you don't mind me asking, are you rh negative maybe O? Possible Celtic ancestry? God bless
I'm so sorry I totally missed replying to this message. Hope you are keeping well. I'm not sure what type of blood I am actually, but I imagine I have Celtic ancestry as I'm from Scotland. It's all very interesting! Take care xx
Bless you darling. Thank you so much for sharing your experience. I was diagnosed with AIH back in April. Started the Prednisone and ALT levels returned to normal until I caught a cold a month ago and ALT levels went up again and now back on a higher dose of prednisone and tapering off again but the Dr. says I need to start Azathioprine in January and stay on it long term. I didn’t know my cold is what triggered it. I was feeling so depressed since my diagnosis but you have given me hope. I need to think positive and keep going.
Wow your amazing.
I’ve just watched your 3 part video and found it very helpful and informative.
I am a 46 y old man and just been diagnosed with AIH , I’ve been on my steroids a week and have noticed my appetite has definitely increased!
I was perfectly healthy up until March when I developed jaundice and fatigue. But I couldn’t get treatment or a biopsy because of the Covid pandemic.
I don’t know how much my liver is damaged or much about the disease but thanks to you I will now as my consultant more questions.
Your outlook on living with AIH is inspiring. Thank you
Thanks! Hope you get on ok for the next while; COVID is having such a negative impact but I'm sure you will be well looked after. Take care!
You are amazing. Thank you so much for relating your story and updating us. My girlfriend was just diagnosed with auto immune hepatitis. We are reeling from this and trying to find balance again. She is in the early stages of being diagnosed and just started on medication 5 days ago. I'm going to keep your example in my mind and try to be a calming and helpful influence to her. Thank you so much for your video.
Thanks Kevin. I can totally relate to your girlfriend and my heart goes out to her. Please keep in mind that time is a great healer - I know that is easier said than done, but it takes time to get a new normal. I was really all over the place for the first year or so after diagnosis, crying all the time - but then I got over it and started enjoying life while I could :). Take care xxx
Kirsty, thank you very much for sharing. I really appreciate it.
I was diagnosed with celiac disease, PBC, and AIH in one day!
I was doing endoscopy & colonoscopy bcs I had some GI problems. So we discovered the liver diseases by a coincidence from blood results.
I received my liver biopsy results yesterday, it seems that I have AIH & PBC. I’m yet to meet with my doctor.
My feelings are numb so far, however I get terrified every time I think of taking prednisone and steroids.
Aw man it sounds like you have had a right bad time of it :( What a shame. I can only say that time is a great healer and it will take a while to process your diagnoses. Don't be scared of taking steroids. They will save your life and you won't be on them high dose forever. Take care, and any questions, give me a shout. xx
@@kirstymills1761 Thank you for the support. I really appreciate it 💕
I was just diagnosed with Scleroderma early last year, a rare autoimmune disease, the official name that I have is Systemic Limited Scleroderma aka CREST. That's a mouth full! I was also tested for a multitude of other diseases. So along with the scleroderma, I have anticardiolipin antibodies(blood clotting disorder) and asma(anti smooth muscle anitbody) which is a liver test. My doctor wasn't too worried about the asma because it was a weak positive. I was just tested again for the asma and it came back as a strong positive! I am totally heartbroken. I don't really have any symptoms of it, I believe, because I have scleroderma it is hard to tell which disease is causing gi problems at the moment. I go to see a hepatologist next week to see what I need done and what the treatment plan is going to be. I have found your videos most helpful and comforting. My family has been very supportive and I am very grateful because of that. I hope that all stays well with you.
Hi, I'm really sad to hear your story. I hope that you get some answers from the doctor and can get your problems eased soon. I'm glad you have found the videos helpful. Take care xxx
You are very inspirational. Compared to what is going on with my liver, I feel bad for worrying so much. While I have no diagnosis yet, your story gives me hope.
Aw thank you! I think everyone is entitled to worry but try not to let it get you down too much if you can. There is something positive to be taken from it, even if it's just appreciating days when you feel good! The positives just might not be immediately obvious 😉 hope you keep well xxx
I was had autoimmune Hepatitis and I got my liver transplant 9 years ago
Hope you are keeping well :) x
Keep strong I know how it goes sometimes
Would you mind sharing a little about any side effects you might have had from taking the imuran medication and what dose you need to take, my 20 year old son has been recently diagnosed with aih and has developed a bad skin rash on his face since taking the imuran
Hi! I tend to run really low on white cell count when I'm on azathioprine. It's a constant battle between getting enough immunosuppression to avoid liver flares, and not destroying my bone marrow too much. I've also got really thin hair after using azathioprine, but don't have any rashes or any other side effects. Hope your son improves soon xx
Hi thank you for your story. My bloodwork currently shows very high amounts of liver enzymes and a low titer for lupus. Had an ultrasound done that was normal. I'm currently waiting on genetic testing results and next week i have a biopsy. My doctor believes I either have Wilson's syndrome or autoimmune hepatitis. I'm almost 100 percent sure it's autoimmune hepatitis. I'm scared but also looking forward to finally being cured as this has been going on for years and doctors just kept saying stop taking Tylenol, bc powder, etc. They didn't know what was going on as my enzymes would be high one week, then normal the next.
Also, I'm in university studying genomics and molecular genetics and am trying to make a possible link between certain genetics and autoimmune diseases. If you don't mind me asking, are you rh negative maybe O? Possible Celtic ancestry? God bless
I'm so sorry I totally missed replying to this message. Hope you are keeping well. I'm not sure what type of blood I am actually, but I imagine I have Celtic ancestry as I'm from Scotland. It's all very interesting! Take care xx
Hi Iam also sufferening from liver disease plz help me.no biopsy or nothing