Liver Biopsy Results today.....: Tonight i... - PBC Foundation

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Liver Biopsy Results today.....

SmileSun69 profile image
15 Replies

Tonight i learned i have PBC and Autoimmune Hepatitis overlapping each other. Crazy, I know. I've read a lot about Ursodiol /Actigall drug. I have been on it two weeks. It is supposed to help with the bile and relieve the itching. It will not stop progression of PBC since there is not a cure. If this will stop the itching, I can tolerate anything else thrown my way. I'll be starting a new drug Imuran with prednisone being the kicker to jump start Imuran drug. I'll continue Ursodiol in addition to prednisone with Imuran. I'll be meeting a Liver Transplant Specialist to gain a relationship with that Dr for the day I may need that transplant. I wish you all the very best. I just want to live healthy and happy. Xoxo

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SmileSun69
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15 Replies
Rockie profile image
Rockie

Hi Smile Sun 69. First I want to say sorry about the diagnoses.I do not know your age, but it is not an easy ride, but one learns to try and cope with it. I can tolerate most this disease, but the itching is sometimes just driving me insane. I also have your condition. For me liver transplant is no longer an option. I am 75. Must have had it for many years, but only when itching started, it was confirmed, after biopsy, ERCP and other tests. Have thyroid auto immune as well. That I had since I was in my 40"s. Best of luck. I always try and pacify myself by saying it could have been worse.

SmileSun69 profile image
SmileSun69 in reply to Rockie

Thank you so much. Yes, wow! the itching is brutal. Thankfully i have been taking Ursodiol for almost a month on 27th. It has helped relive the worst of the itching. I also found a Xanax at night would calm things down to allow me sleep. I have excellent drs. I actually work for one who is treating me in conjunction with my primary gastroenterology Dr. I was just given a referral to see a liver transplant specialist at Houston Methodist in our well known Texas Medical Center. When that appt will actually happen, could be weeks. They gave me a number 13 for my status of my liver and number 20 you need a liver or be on the list, but at 27, they said its an Emergency no picking your dr then. So I'll meet some while I'm a 13 and stay prepared. Thank you for reaching out to me. Best of luck to you and your health.

Theresa

Rockie profile image
Rockie in reply to SmileSun69

will be holding thumbs and am thinking of you.

Junolee profile image
Junolee

Hi there. Same diagnosis for me 4 years ago. Continue on Urso and Imuran (steroids for 18mths finished 2 years ago) all going well with me. Stable. They are considering increasing my Imuran to see if they can get my liver functioning results even better but they are happy at current levels. I have an MRI in June and then they'll decide. I had no itching but had jaundice when diagnosed. It hasn't really changed my life too much, I think more about what I eat and go to bed earlier :) still work full time and travel a lot, even to China a last year. No worries. Life is for living. Keep us updated.

SmileSun69 profile image
SmileSun69 in reply to Junolee

Thank you for reaching out to me. I am waiting for a test TPMT to come back to see if i can tolerate increasing the Imuran to help against the Autoimmune Hepatitis at this point. Gosh, be so happy you did not have any itching. That is truly the worst. I'm an olive skin person but never changed a shade to yellow. Its interesting to hear how this disease affects everyone so different. Thank you for reaching out. Good luck with your health too.

Theresa

Jaxter profile image
Jaxter

Hi Smilie Sun69,

Getting your head around diagnosis is hard, I'm sorry you have so much to deal with. I always prefer to know what I'm up against so I can do my best to fight it and understand what is going on. I hope your appointments go well and your medication gives you relief from the dreaded itch. xx

SmileSun69 profile image
SmileSun69 in reply to Jaxter

Thank you! Yes, me too. I want to know what is happening because I like to deal with it and move on. Its definitely a learning curve but mentally i know I will not let this be my 1st or last thought each day. :) Hope all is well or better with you. Thank you for reaching out.

Jml123 profile image
Jml123

Sorry about your diagnosis hope you are ok.let us know how you get on with the new meds.

SmileSun69 profile image
SmileSun69 in reply to Jml123

Almost a month on Ursodiol and itching is finally slowing down. Just waiting for another lab test to come back to see if I can tolerate increasing the Imuran. I'm sure I'll be able to as I've been on Imuran for a week already 2x a day. No major issues besides bloating but who knows if that wasn't something I ate. Thank you for reaching out to me. Theresa

Jml123 profile image
Jml123 in reply to SmileSun69

All sounds good lets hope it stays that way.

Lekkerbek profile image
Lekkerbek

Hi, I have to say that the Urso tablets has not only helped with the itch, but all the different blood counts has come down. I feel so much better.

SmileSun69 profile image
SmileSun69 in reply to Lekkerbek

So far, same here. Labs almost reduced by 1/2 just being on Ursodiol. There is hope for this. :) Thanks for reaching out to me. Theresa

Rockie profile image
Rockie

Lekkerbek. Hi, Please tell me in which country do you live.I am looking for a buddy in South Africa with the same condition.

SmileSun69 profile image
SmileSun69 in reply to Rockie

Hi there. I am in Texas/USA. I'm also on facebook. I started a page for Awareness if you'd like to connect there too? Awareness about your health, is the page. The profile pic is a pin showing Liver Disease Awareness.

Rockie profile image
Rockie

Thank you. Will check out your Awareness page

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