Recently diagnosed

Anyone else diagnosed with PBC stage zero? I just got my diagnosis after a liver biopsy and I started Urso 300 3 times per day. My ANA is 1:2560 and AMA is 1:163. Liver enzymes not too high. Wondering if an anti-inflammatory diet would make more sense than jumping on Urso. I had a thyroidectomy 20 years ago and have had lots of trouble regulating it because docs only looked at TSH. I was told after thyroid was removed that it was pre- cancer even though pre-surgery biopsy said Positive Follicular Thyroid cancer. I feel like it was undiagnosed Graves' disease. Now that I finally have Medicare and Blue Cross PPO, I am taking myself to a Rhuematologist, Thyroid specialist and Naturopath to try to figure this out. I have been achey for years, lots of loose stools, facial rash and fingers that turn blue, white and even bright yellow in the cold. I get occasional little purple spots on face and arms. Varicose veins are horrible only on one side of the body even though I had them stripped two times over thirty years ago. My son had Systemic Lupus and my brother died at age 13 of Hepatitis but it wasn't viral or bacterial in autopsy. Need advice from the good people on this site.

13 Replies

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  • I am stage 0/1. No symptoms and doing great. Good luck

  • Are you taking Urso.

  • I am now. I also follow paleo

  • No matter how good your anti-inflammatory diet was it would not help the bile flow through the liver. Urso does help this so my advice would be to continue with it and hopefully remain at stage zero. You are lucky it has been caught so early. Take care.

  • Hi Sissymcc

    apologies here struggling with my tablet, it is working very slow today

    :-)

  • Hi is that you, IM?

  • Hi Sissymcc

    I was diagnosed over 10 years ago as asymptomatic which I guess is similar to stage zero. URSO is essential for the bile acid control and for your continued well being. Although PBC is normally a slow moving auto immune disease it can progress without the proper treatment. I have been on URSO since the beginning with no adverse reactions thankfully but ifmI look back with hindsight I do not think I understood how severe PBC can be without treatment or looking after your body. Although diet does not seem to make a huge difference for myself I find that a diet low in fat and salt rich in fresh vegetables and less meat than I used to have keeps me better balanced. I drink loads m8re water than I did and a lot less wine! Now I have an occasional drink. Remember that anything you put in has to be processed by a poorly liver so any help to ease its workload is good.

    Apologies for my typos the tablet does not want to let me do corrections this morning.

    If you have not already joined the PBC Foundation it is free to join and there is a lot og good information there. Also I think you are in America where there is the PBCers.org they can be found on facebook or through a search engine.

    Best wishes

  • Hmmmm ask your Rheumy about Scleroderma. In particular Limited Systemic Scleroderma aka CREST. I have both PBC and CREST and have seen others with both. My Rheumatologist who is also the director of the Scleroderma Unit at Univiersity of Michigan also told me they are seeing more and more patients with both. I too had my Thyroid removed 20 years ago and I have seen other PBC patients with Thyroid issues as well. What I have seen in forums is a vast difference between PBC patients and progression, using URSO or not. It may have something to do with how advanced one is when diagnosed. Some doctors believe one must start URSO in early stage to help, but others feel differently. URSO made things much worse for me but I was already in later stages with cirrhosis when diagnosed and my liver enzymes are quite low or in normal ranges! I do have complications with Scleroderma Esophagus making banding varicies impossible now. I nearly bled to death last month due to the band not holding because of the Scleroderma scarring. If only I had taken better care of esophagus sooner, but my Rheumy as are many, was not informed enough about Scleroderma because it's a bit rare, to explain all that to me. I ended up with an emergency TIPS procedure so I should no longer need bandings. It rerouted some of the blood flow to reduce pressure. Having said all that many many many patients do very well with URSO and very little problems. If you look up a Facebook page PBC Angels there are many patients there and most are very positive and helpful.

  • Thanks. I am sorry for all you had to suffer. I go to my first Rhuematologist appt in a few hours. I will keep you posted on the diagnosis

  • Hi Sissymcc

    I wonder if there could be more than PBC at work....it appears PBC sufferers generally also have other autoimmune disorders. my fingers also change colors, usually the top knuckle to the tip are white, and then black in extreme cold. My diagnosis was Reynauld's Syndrome. No cure, but avoiding extreme cold, including doing simple things like cleaning out the freezer with gloves will preserve the fingers...i was also told varicose vein issues on the left side were due to venous insufficiency, haven't tackled that yet so i have no thoughts on that...but i guess i would urge you to see your primary care provider to determine if your other symptoms have other causes that need to be addressesd. Urso won't cure the other auto diseases, but it will slow down the PBC....not to mention make you feel so much better, at least in my case. I wish you all the best as you fight this battle with us.

  • I was diagnosed in December. I had had a horrible time digesting my food. I had been going to the GI doc for 30 months telling him this. They keep telling me I produced to much acid and prescribed protonix which did not help. My ANA had been positive for years Noone had ever found the cause. Finally they ran my ran the right test and did the biopsies. I also am stage 0. The urso was a blessing for me. My food is now digesting properly which has given my energy back. I for one feel like if it can help slow down this disease I would not risk taking it. I have had no side effects and have been on it now 8 months. Good luck

  • Thanks, nice to know there is another "0" out there. Let's hope we stay there. Your answer was really helpful. I go to the Rhuematologist in a few hours and I can't wait to hear what he thinks about some of my other symptoms

  • Please let my know. The group has been really a wealth of information!! Praying that you get wonderful news. Learning certain tips has really help me feel a lot better from where I started.

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