Symptoms of non responder to urso

[Spanishnan]

I have been taking urso for 9 months now after being dx with PBC but the last couple of months I have been feeling sick and getting gastric reflux after taking them. My last bloods were within normal range apart from high colestrial. Can anyone tell me what the symptoms are if you are a non responder to urso. Thanks everyone.

[Hidden]

I'm sorry to read this Spanishnan - I don't know because at present I am a responder. I recommend that you ask Robert or Colette because they are sure to guide you re the best next step for you if you think this is the case, as well as asking your doctor in Spain about your symptoms because they may or may not be related to PBC.

Other here are non-responders and I hope someone leaps on very soon with their experiences. Best wishes

[Ballymahon2]

I think you are a responder if your alp levels come down

[Lisabette]

I get such terrible acid reflux from Urso that I can’t take it. I recently tried again but just taking one a day instead of three. I still couldn’t tolerate it. Right now I’m on Ocaliva but haven’t had dramatic results on my numbers. But I do feel better.

[gwillistexas in reply to Lisabette]

Hello. I also take Ocaliva. Are you on 5 or 10 mg?

[Ellewoods1]

You are a responder if your ALP, AST and ALT fall back in normal range after URSO. I had the same issue with acid reflux but my hepatologist prescribed 20 mg of Omeprozal.

[Ballymahon2 in reply to Ellewoods1]

My hep told me i am a responder to urso but my alp has never come back to normal alp ast ggt have come back to normal.my alp levels have come down but have not come back to normal.

[Skypony]

Hi Spanishnan, if your ALP and other markers were abnormal before taking Urso and have normalised after, that’s the intended effect and sounds like you’re a responder, which is good news. What you’re describing are side effects, which sound very uncomfortable, and they can occur whether you’re responder or not - the two are not connected.

Maybe you can talk to your doctor about managing side effects or taking it in split doses at different times, because trying to stay on Urso should perhaps be your first aim. If you can’t, there are other options as others have said.

Best wishes

[Spanishnan in reply to Skypony]

Thanks for you reply. I take 300mg Ursobilane capsules, 1 three times a day. These were prescribed by my Spanish Dr who told me they were exactly the same as ursofalk which I took in the UK but my problems seem to have started when my meds were changed over here. Will speak with my Dr when I see him again. Thanks for your help.

[Katienharley]

I was diagnosed in June of this year and prescribed Urso right away. I fell very ill at the end of July and my GP said it was most likely side effects of the medication. I had muscle and joint pain, nausea, headache, back ache, diarrhea, light headed. I’ve been able to slowly manage this all with a dramatic change in diet, lots of sleep and low stress. My Hepatologist said it couldn’t be side effects but it’s all too coincidental timing-wise.

My first 3 months after Urso my let’s dropped to 2x normal. (I was originally 3x normal). My blood tests last week - ALT and AST dropped to normal. ALP only dropped to 231 (from 235 and originally 340) and GGT was still crazy high but my GP was happy with the results overall. He said a drop is a drop, no matter how big or small and you become a non-responder if your levels start climbing again.

I’ve found that eating is trial and error. If Urso is working we have to find a way to manage the rest. I stick to a dull menu of what I know won’t cause me grief.

Hang in there. From what my dr told me - if it’s concluded that I’m a non-responder and my levels start creeping up again then he prescribes Ocliva, or whatever that other pill is, IN ADDITION to the Urso.

Sadly it doesn’t look like we have many options for treatment.

Good luck to you. Sending hugs.

[Candy12]

I echo some of what the previous poster has said about not responding to URSO, if your numbers drop and stay down then your responding . Your numbers do not need to be normal, to be a responder, yes it’s the optimum but there are criteria that doctors use to measure if your responding.

My doctors now go by the UK-PBC guideline of ALP within 1.67 x the upper limit of normal, there are other criteria that sits higher.

So I would advise that you ask your doctors what criteria they use to measure your response to URSO, especially as it’s normally decided at one year ( that your now approaching). I say this because when I was diagnosed 10 years ago it was never assessed after a year whether I was responding fully enough, which later caused a lot of confusion.

My numbers started to climb last year, so it was decided I was no longer fully responding but even then they had to be consistently climbing not just a fluctuation.. I will say there were no symptoms though.

Make sure you take URSO with a meal, I still get reflux if I don’t. Also are you taking capsules , and could they be splitting to early before reaching the stomach , I remember I had a bad batch once where they split in two just after I swallowed them giving rise to more reflux. I’d end up burping white powder).

It may be side effects but I would have thought you’ would have had problems earlier than nine months in, and it could have any number of causes, so definitely worth speaking to your doctors about.

[Hidden in reply to Candy12]

I find I can’t tolerate the capsules at all, hate it if they are the only things my pharmacy can get hold of!

[Hidden]

I get acid reflux after taking my Urso, I take 1g per day at night, I always make sure I eat something light (a biscuit or similar) straight after and that seems to help, plus I don’t lie down straight after taking them, sometimes a bit of milk helps too.