I saw my liver doc yesterday. My hepatic screen was normal. He said I can not go off my urdosoil 1000mg a day since my levels would change. I have had close to normal readings, since put on this medication 5 years ago. I that trive level everyday for the past 8mos. My energy is up, IBS much, much better it has alot of B complexes and Vitimin D. There is a lot more minerals and nutrients too. I take 2 tablets, a shake and wear a patch. I do not know if my blood work is better for it or not. I have no itching!!! Has anyone ever gone off their medsication? If so did your numbers become abnormal? Thanks everyone!
lexi
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Hello Lexi_Img.
I don't know regarding coming off the urso and how your LFTs (liver function test and probably the GGT one) would be. I had raised LFTs and GGT when I started on the urso at PBC diagnosis December 2010. So far they've not returned to normal but did come down over time.
I would say that it is possible your LFTs might start to rise with diagnosed PBC if they are normal or close enough to normal without taking urso. That's one reason why we have the LFTs done at intervals, to check for changes. I have this opinion that taking the urso in a way falsifies our LFTs but in my mind if it is improving how we actually are with the PBC then all well and good. I'll continue to take the urso though I've always been anti-medications (I only take the urso, not had any oral medications since pre-2010 except this).
I started itching intensely early 2010, this is how PBC was diagnosed. Itching is said to be of no marker at all in PBC same for fatigue.
I would in your case enjoy life, you sound to be doing exceptionally well and I hope you go on to an itch-free life living with PBC. It might be the only sympton I feel I have but I'd give my right arm tomorrow to get rid of the itch. (It has improved being on the urso I have to state but still at times, late at night it can be a damn nuisance.)
Thanks for your support. I am very happy about my numbers and wish the same to you. I used to be so itchy especially at night and hoping it never comes back. I think I will continue to take the meds as my doctor suggested
If you've been taking ursodiol for five years and are greatly improved from before you started it, why would you want to go off the medication? It is very likely that it is doing its job and that's why you are feeling (and testing) so much better. There's no cure for PBC, but if what you're doing has things under control, by all means keep doing it. It's very possible, even likely, that going off the drug could result in a worsening of symptoms and more rapid disease progression. I would listen to your doctor. 😊
I absolutely agree with Dianekjs. If you were positively diagnosed with PBC, then PBC is incurable and - at the moment, in the UK - Urso is the only treatment. If you stop the meds, it is likely your lfts will go back up and your condition will progress. Even if that is caught quickly, and you go back on Urso, you may have set yourself back further than if you had carried on with the Urso.
As you seem to be so healthy, with so side effects that you mention - and you have no way of knowing how much your own health regime is responsible - then I would strongly advise continuing with the Urso.
Grittyreads, I remember that you have been positive for AMA/M2 antibodies for many years and remain symptom-free, is that correct? If so, were you prescribed Urso based on your labs? I've had the same positive bloodwork since early 2013, but have not been started on the drug as a liver biopsy was negative. I know some doctors prescribe it as a preventative measure in situations such as ours. Just curious. Hope you are well, and thanks.
Yes, I tested positive for AMAs in 1992 (but I only confirmed 2 years ago that it is sub-type M2), but I have never been given Urso.
Then, I was told to have 'blood tests' annually, which were consistently 'perfect' ... PBC was never mentioned. I had just been warned that certain autoimmune conditions could develop in people with AMA. I wasn't given any medication, and nothing was suggested - but I don't think Urso was around then. I continued with annual tests for 12(?) years, then was informally told I could stop by a rheumatologist I was seeing for something else: he said if nothing had developed in that time, it never would.
When I mentioned AMAs to a new GP, in 2008, when she proposed blood tests for arthritis, she panicked, & had me re-tested for AMAs. The lab confirmed the AMAs - and the GP suggested they said this 'meant' I had PBC. (NB This is just the lab, based on AMAs alone! Another poster on here, also in Devon, has noted that this is what it says on lab results, 'down here' . I don't know if all labs do this, or if the wording may just be that AMAs are a strong indicator of PBC. M2 was never mentioned until I asked about 2 years ago.)
My GP sent me to see a liver consultant, who took the attitude that I didn't have PBC, just had AMAs, and that other tests, scans, examinations etc were clear. However, when his letter arrived he diagnosed me as 'pre-symptomatic PBC' - a diagnosis I now know does not formally exist. Other GPs in the practice were annoyed, and said the diagnosis didn't exist, that I just had AMAs, but they didn't suggest I could do anything about this. However, no mention of Urso was ever made. I 'rebelled' when Travel Insurance etc, insisted on going by the wording of the diagnosis, the mention of PBC, rather than just accepting that I only had annual blood tests. I became more annoyed a few years ago when I discovered this site, and found others like me, who only had AMAs but were not diagnosed.
Eventually I emailed one of the Consultants the other non-PBCers on here had mentioned, and he agreed it sounded as if I didn't have PBC, but he couldn't say more without seeing me. My GP agreed to refer me, and the consultant did more extensive tests and checks, and in particular asked a lot about my medical history and the family medical history. He changed the diagnosis to 'AMA reactivity', says I don't have PBC, will probably never develop it after all this time, or if that if I do, it would almost certainly be mild and slow developing. He made it clear he would not prescribe me with Urso, now, and he also suggested he thought it unlikely I would need it even if I develop PBC. I think he was taking the attitude that as Urso can itself cause some problems, it would not be helpful if my PBC was mild. I think this is to do with the fact that Urso mainly stops the 'body-wide' effects of PBC, once bile and other adverse chemicals start to get into the body and effect other areas: the urso mainly neutralises these effects, but with less of an effect on the liver (?). Although there is some evidence that Urso can slow-down progression of the disease, it seems it has little effect on scarring of the liver; it is more that Urso protects the rest of the body. I took his attitude to mean that, as yet, my body was not under threat, and possibly would never be, even if PBC does develop but is very mild [most of my understanding of Urso is from the PBC F's compendium]. It's always possible that he also had in mind the advent of other drugs.
So no Urso, ever, and never any suggestion of it.
Sorry it's so long! Hope this helps, you take care.
Hi dianekjs, I was dx. With PBC based on my labs and a positive liver biopsy. My numbers in the being were high now they are normal. I would like to go off the meds it could make my numbers go back up. I guess I need to sit tight. Wish you well🙂
I understand, but generally in your situation Urso is prescribed for life. You don't want to mess around with PBC, and that's wonderful you're doing well. Keep doing what you're doing! 👍
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Newly diagnosed I have many questions.
Finally, some good news!!
