Changes in my Pic

Hello I was diagnosed with pbc 4 years ago. Been on urso since & felt fine but the last 6 months my itching started I feel tired all the time. I was thinking maybe my age . I'm 50 this year😖.

On Tuesday I had my yearly check up with my consultant. My function liver tests have shown a slow but steady rise in gamma lET ALT & alk phos & increase in protein. I had all liver function tests repeated & see my consultant again in July. I was told there may be an overlap with auto immune hepatitis. Has anyone else had this . It's got me worried & need to wait a month to find out . I've also found myself being very forgetful & loosing things I'm concerned about how I'm feeling lately. If anyone can help . It would be greatly appreciated. Carole x

8 Replies

  • I have both autoimmune hepatitis and pbc. My Dr immediately put me on prednisone with Urso. He prescribed a liver enzyme blood test and put me on azathioprine. My enzymes was in range for about a month. I went back to my dr to have my prednisone lowered but my alt was back up. I'm very frustrated. How high is your enzymes

  • Hello Jenny. I have just received a copy of the doctors letter. It only says about the increase & suggestions what it could be. I don't actually know at what level they were at . It's hard to take everything in at your appointment . So I can't tell you how high my enzymes are x

  • In your country will your Dr give you copies of your blood work and dr notes. I have copies of everything. Maybe you can call and ask

  • Yeah I have had copies of my results in the past . I will do thank-you

  • Hello, I was diagnosed in 2012. My last visit with me hep Dr was in May & he feels that I also have a overlap of autoimmune hepatitis, just too early to actually diagnose at the moment. But the itching, extreme fatigue, &, what we call in the States, brain fog are all party off the PBC, unfortunately. My hep Dr started me on a med called Xifaxan for the brain fog. This happens when our liver becomes compromised & can no longer filter out certain toxins, like ammonia. Therefore they remain in our blood which affects the way we think. Mine happens mostly when Im so exhausted at night after a long busy day. I completely forget a conversation right in the middle of a sentence. Completely forget what Im doing & misplace things as well. I hope this helps a bit.

  • Hi shulsey. Thank-you for the information. I've had a really bad week of loosing things & I too forget what I was going to say halfway through a sentence. I've been so worried & upset after realizing how bad it's been. Hopefully I get answers next month. Hope you don't wait too long for answers.I was starting to think I had dementia or something. Your reply as helped me a lot thank-you

  • Hi Carol,

    I was diagnosed with PBC and AIH five years ago. I have been lucky where itching has been rare and more related to starting Ocaliva (which resolved) than liver disease. As for the forgetfulness - all the time now. My purse, keys, phone. I drive by my destinations. Forget mid conversation. Forget familiar names of people I know or places. I was concerned enough to have a brain scan and there is no evidence of any disease process and my ammonia levels are fine. I have started using tools like setting a GPS destination every time I drive. I uses SIRI on my I phone to give reminders or put appointments on my calendar and I check in with SIRI on a daily basis. Don't be afraid to let your friends and family and even strangers know that you may be having cognitive issues. I find people to be very understanding. I do have the fatigue and went from working 60-80 hours when first diagnosed to stopping working 2years ago. I think this is what allowed me to remain in stage 1-2 for so long without treatment (I was allergic to urso). Now after working so hard all my life I have to give myself permission to stay home and take naps. I do tire out after a full day and sometimes even sleep through the next day or two. One of the hardest thing for me was the waiting to see the next labs. At first it was month to month, then every 3 months, now will be every six months. I had to learn to give myself permission to live in and appreciate/enjoy the present and not dwell on what the future may hold.

    I wish you peace and rest and something to enjoy each day for the rest of your life.

  • Thank-you for your comments Q8Cooper. I too need to write shopping lists . Set reminders on my phone . But I've always had a good memory & to go from that to forgetting everything misplacing things & forgetting what I was going to say is quite frightening. I don't see my consultant till July 19th . So hopefully she will prescribe me something to help. I only usually see her once a year . But with my bloods not being the normal & more taken I am seeing her after 4 weeks .

    I wish you all the best & hope you too have a good life .

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