My new doctor ran extensive tests for my sudden muscle leg spasms that got real stiff last 2 months n severe weakness. I had a negative biopsy 6 years ago. I was told my second ama m2 test was high positive at 90. He prescribed urso. I get dizzy easily and am scared of side effects. I would not take it if i didnt have such weakness n liver n digestive discomfort. I am super sensitive to meds. I doubt my new doctor, but with my family with pbc history with sis n my lifelong bouts of digestive issues n chronic pain, I have to wonder if he is right. I dont take any meds except topical acyclovir. Any advice? Hepatologist is in the works.
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Pbcornot
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PBC can usually be diagnosed with a combination of blood liver tests and the AMA test. When you decide to start taking your URSO tablets split the dose across the day and take with food to reduce problems with your tummy. Perhaps your doctor might suggest starting with a small dose and building up to the full dose to avoid your difficulties with digestive discomfort. Most of the wisdom on PBC which can only be managed not cured is to start treatment as soon as PBC is diagnosed to give yourself the best possible outcome.
Dizziness is not necessarily PBC related - you can find some good information on dizzy head treatments on You Tube. For myself when my head spins when I move especially in bed at night I use the Epley manoeuvre.
I hope your hepatologist gives you more confidence to go ahead with treatment.
Good advice from butterfly. It’s worth trying to take the urso. I found that I did get a few side effects for a few weeks but they settled down. The doctor recommended skipping a dose when I felt bad and then carrying on when I could. I was determined to adjust so stuck with it and it did pass and it was worth it to see my blood work come back to nearly normal range.
If you have been diagnosed by the presence of abnormal liver function blood tests (lfts) typical of PBC, -and- the presence of AMAs (sub-type M2 ... although the level is not supposed to matter) then that does mean PBC. [NB AMAs alone are not enough for a diagnosis, the lfts also need to indicate PBC.]
Nb I'm not clear what you mean by negative biopsy. Do you mean it was clear of signs of PBC? If so, that's good, as progression is slow,
If so, the only medication so far is Urso -and now ocalvia as well if you don't respond to urso. Also these are not cures - there is no cure for PBC, as yet - but these medications do slow down the progression of PBC, so that most people will have a full and happy life and die of something else, not PBC. No (or almost none) alcohol, a good healthy diet, especially little fat, and exercise will all help, as will living a full life, trying to avoid stress and worry, and treating yourself and doing things you love. Stress is the worst for autoimmune conditions. So: I would recommend taking the medication (make sure the dose is right for your body weight), plus healthy eating, exercise and fun.
I hope this helps and that the hepatologist will help you feel happier about the condition and the medication.
Thank you so much for sharing your wisdom on Urso. My liver biopsy 6 years ago was normal. 2 months ago, my Ast and ALT were high along with elevated ama and ana. Current test all is normal except ama m2 at 90. Prior to this bloodwork I had a bad case if fecal impaction. Could that or gluten intoleranxe affect Ama result?
I'm also someone who doesn't tolerate a lots of meds.. my drs. work with me.. we build up the dosage.. I understand your fears but you can start with part dose and build up. I had some effects for first months but..but eventually got used to it.. the same could happen for you-- give it a try-
I used positive thinking with the meds-- when I would take the pill I would tell myself "this pill will help me". Repeated several times... instead of dwelling on possible side effects I might have. I wish you the best.
Thank you EileenUSA! I appreciate your help. Thats a great way to look at it. I think I will need to build on it little by little. There’s a big part of my thinking that refuses to believe that the doctors are right
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