I went to my gastro last Monday with positive thoughts that my healthy eating plan and the Ursofalk would have had some positive impact, BUT bilirubin had gone from 45 to 76, ALP from 752 to 768, AST from 96 to 622, and ALT from 182 to 1179. Albumin was constant 38 and the GGT had gone down from 895 to 425. He said to remain optimistic but that is difficult when you look at these results. I feel OK, only a bit tired at night.....or is this the nature of PBC? Creeping slowly up on you!
Anyway, he has decided to put me on 10mg of Methotrexate. I take it once a week and then have to take Megafol (folate) for the other 6 days. So far I still feel normal with no side effects. You have to put sunscreen on and stay out of the sun. OK in the Aussie winter, but don't know how I will go when summer hits. I love the beach. Has anyone else been on Methotrexate? It is meant to suppress the immune system.
Have another appointment on July 1st and I am continuing to take the Ursofalk, 2 morning and 3 at night. All you can do is wait and see I suppose........
Skippy (still hopping along)
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skippydownunder
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Have you been tested, or had a liver biopsy for autoimmune hepatitis? I would just ask to see if there's a slight chance you also have this. I have PBC/AIH overlap. I take steroids and mercaptopurine to supress the immune system. I also take ursogall....the only bad side effect of this for me is that it bloats me out and I gain weight... when I don't take it the bloating goes away and I lose weight.
I did have a liver biopsy which staged the PBC at late stage 2 early stage 3 , but there was no mention of AIH overlap. I was tested for hepatitis by blood tests. All negative.....are there other tests for AIH?
Hi Skippy, another from down under here I had a biopsy which I am still waiting for results for to confirm if I have PBC or both PBC and AIH. My blood tests showed a weakly positive anti smooth muscle antibody which can indicate AIH and I think some other immunoglobulins they measure. I think biopsy is meant to be most conclusive though.
Good luck with the biopsy results. I had the ANA test which was negative. Is that the one for AIH? The AMA was positive. I am in Sydney. Which part of Oz are you in? I am actually feeling fine, even though the blood tests are high....only a bit tired at the end of the day....and the itchy skin is only mild at times. Apart from thinking about the numbers all the time and my beautiful yellow eyes, I wouldn't even know I had this disease. Sometimes I feel like I am waiting to get sick....stupid I know! Most of the time though I just get on with it as I am busy with work, family, etc which is the only way I suppose.
No the antibody more associated with AIH is ASMA (anti smooth muscle antibody) but it can be mildly elevated in other liver problems too. I also have strongly positive AMA, so I think my doc thinks I have PBC but unsure about the AIH which is why I had to have the biopsy. My liver function is only very mildly elevated at the moment so I have no symptoms, was all just found by accident. I too am trying to just go on with normal life, being busy is good, not dwelling on too many "what ifs" as it seems really there are no concrete answers. I am hoping it will be easier to do this once I know for certain the diagnosis and life is not revolving around so many tests and dr appointments.
Good luck with your treatments, hope you get so see some improvements in your bloods tests very soon.
Hi Skippy, this is four years on so not sure if you still follow these posts. I have recently been diagnosed with Pbc stage 1 and the ursofalk has also increased my alp function. I was wondering how you are now.
My LFTs are always very high but they said they have "come down a bit" since starting on Urso about 6yrs ago. Had another endoscopy (6th in 2yrs) last Thursday as they're testing for Celiac Disease.
I have only been on the Ursofalk for 6 weeks. Did it take time for the blood tests to improve? I have yellow eyes due to the bilirubin levels which is the most annoying thing as people always ask of I am feeling ok due to this. Are your bilirubin levels high as well as the other tests?
My ALP has always been under 200 for 8 years. I did not know I had PBC. I was finally diagnosed & started on Urso 5 months ago. One month after taking it my ALP jumped to 574! I get results of my next blood test next week, so we'll see.
Thanks for the info. I have blood tests in a month so need to wait for those I suppose. Fingers crossed our results come down. Was your doctor concerned the Ursofalk might not be working or was he like mine and said "stay optimistic"?
The hepatologists. told me not to get upset, because this is the nature of the disease, that it will fluctuate up & down. He said a patient must be on Urso & bloods monitored for a yr. before they know if you are a responder.If not, the patient is then referred to clinical trials. However, I read on the National Liver Foundation that if the patients responds to urso, the ALP will come down within 6 mos. & consistently stay under 200, when blood test are taken over the yr. period.
Hi Skippy, thought I would share this info with you as well....If ALP can remain 180 or below, the patient is in a "bio-chemical remission." However, that status can change, being that the nature of any auto-immune disease can become more or less active. My hepatologist that told me this is the director of the liver transplant center at a top hospital & did his internship under Dr. Gershwin (the "Guru" of PBC) in the U.S. I recently received a DVD from the liver foundation in the U.K. The hepatologist on the video says that LESS than 5% of PBC patients ever get to transplant stage. That really made me feel better.
I have not been put on any medication since being diagnosed 8 years ago apart from Losec
My Dr. and I both agree that the less medication my liver has to cope with the better it is.
I have days like today when I start off feeling awful but then I went for a wander through the arbouretum and just being amonst the trees and shrubs makes me feel better. Gentle exercise seems to ease the pain in my legs. I think that it helps the circulation which at the moment is playing up. My fingers were so cold yesterday on one of our hotest days that I dropped my fork as I could not feel it in my hand.. But after washing the dishes the feeling came back so I do not want to take medication until it is really necessary
My daughter was put on methotrexate but had to stop taking it because it caused her liver damage.
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I had a biopsy which I am still waiting for results for to confirm if I have PBC or both PBC and AIH. My blood tests showed a weakly positive anti smooth muscle antibody which can indicate AIH and I think some other immunoglobulins they measure. I think biopsy is meant to be most conclusive though.
Infuriated with GP
Ppi and urso
Ursofalk and itching
NEW with PBC
Fatigue and Muscle pain
