There is no way I would have or possibly have a disease as serious as primary biliary cirrhosis and not see a hepatologist (liver specialist) and let him confirm the diagnosis and treat it. I certainly wont ever get a biopsy again from someone who is not a hepatologist, since they are potentially life threatening and difficult to perform. My primary care doc who was a really good internist and pHD in a medical college completely misdiagnosed me for hep C and missed my lupus and non-alcoholic liver disease and gave me medicine that nearly killed me that I didn't even need to take. These docs just don't know about
the liver. It cannot push up agains the kidney because the kidney is below the liver, though the liver will typically push up against the lungs and diaphragm and sometimes pop out under the ribs. I would just be careful because only a hepatologist is really qualified to make the best diagnosis of PBC because it isn't a clear cut thing. Yes you may have some markers in your blood, but they are not definitive. You alk phosphatase might be high, but meds can cause that and so can liver cancer and other problems that they can only see through a biopsy or at least an ultrasound and you need a hepatologist to look at this stuff. Well, I'm sure you will figure this out one way or another, I just hope you don't get mistreated or problems ignored in the process. I would also be very picky about
the hepatologist you see. I believe that the definitive diagnosis comes from a liver biopsy, though I'm nor sure how because it will onwly show advanced stages, I think a hepatologist can do some other tests that may be better at looking at earlier stages of the disease, Diane, what did they give you for your pbc Ursodiol? I don't believe the meds they give you for PBC are going to give you massive side effects, but I could be wrong. I think you have taken much worse stuff for lupus so why not try it for a day or two? You can always stop. That's why I would have a good hepatologist diagnose me and do the proper testing to be sure you don't have something like liver cancer instead. Unless they look at your entire liver through ultrasound and or mri, there is no way they can tell if you have or don't have a lesion and it will cause your alk phosphatase to rise and similar symptoms. Well, I've said my piece and you all will do what you do, but I will pray that you take this seriously and get in to a good doctor, get good and thorough testing, and get good treatment and follow it. YOu need to feel confident in your treatment or like Diane you won't take the meds. Doctors can be wrong, no matter how nice and educated and wonderful they are about
other things, they do make mistakes or get overconfident and make assumptions. I know when you like and trust a doctor, its hard to believe they screwed up so bad, but it does happen and it happened to me. I was thanking this doctor so much for saving my life and really she almost took my life and did cost me my reproductive organs, mental ability, and my pigment and oher suff. Well take care and I hope you get in to a hepatologist soon. And Diane, if you have doubts get a second opinoin from another hepatologsit and get testing to support his dix and then consider taking the medicine. It may just make you feel better.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments