What shows Urso is working?

[hells456]

I was diagnosed and started Urso five weeks ago and I'm having a blood test next week to see if it's working. I feel a bit more in control when I'm prepared for results. Nearly all my last bloods were well out of range and the next set is testing a lot of stuff. I know it's all important, but what specifically shows you are responding to Urso?

[mel16]

Hi

Think the main blood test is Alp. In uk think should be under 200

[hells456 in reply to mel16]

Thanks, I've got a way to go then to get mine down.

[Bama_girl in reply to hells456]

Mine has never come down to within normal range with the Ursodial since taking at initial diagnosis in May of 2001. But I have been blessed, .... symptom-free, and energetic!!! Take the ursodial faithfully and live life to the fullest! Blessed🙌🏻🙌🏻🙌🏻

[Hidden]

They will want to monitor how all your liver enzymes are doing, ALP in particular.

Be mindful that it can fluctuate even if you are responding to urso, which is what I’ve found, I have 6 monthly blood tests.

I think drs tend to give you a year on urso before they will say whether or not you are properly responding, if not they can add another medication.

I hadn’t responded well enough at my year consultant appointment so he gave me another 6 months to see what happens, so next month, 1.5 years after starting Urso he will decide whether I’m responding adequately.

[hells456 in reply to Hidden]

I read on the PBCF that it can take a year to see if you respond, I didn't realise it can fluctuate and could even take longer than that. I hope you do turn out to be responding well.

[Equestrian]

I’ve been on URSO since 2005. I combined it with Milk Thistle, Reiki and positive visualization. Within six months, I had a nearly normal liver biopsy. My itching disappeared, fatigue and body pain lessened enough for me to be out of bed more than in it. I still have flare ups, but I also have Lupus. As for tests, there are function tests that can help determine damage. There are markers tested that may or may not indicate disease state (AMA). For me the main indicator was how I felt and biopsy. Oddly enough, my step mother died of PBC. She always told me to be grateful that I got the URSO so soon after diagnosis. She wasn’t so fortunate. Moral of the story? Take your URSO!

[hells456 in reply to Equestrian]

I'm so sorry you are having to deal with Lupus as well. It must have been terrifying to discover you have PBC after losing your step mother.

I am taking my Urso faithfully, but unfortunately I've had this for many years without knowing and now I'm already pretty far along.

[kizzywizzy99]

I think it might take longer than a few weeks to know that urso is working. Its nit a drug, but a bile salt that helps flush out the liver and slows down progression of PBC. But as we all have different symptoms and combinations of symptoms, its not easy for one of us to say 'this happened to me so it should happen for you' because that may not be relevant to you. I started feeling better after a few months, less fatigue, no nausea and less pain in my limbs. I know now 20 years later that Urso works for me, but I wouldn't have known either by blood tests or in my body after 6 weeks.

[hells456]

Yeah I thought it was a bit soon, but my letter says 'we will repeat her liver enzymes in 6 weeks to assess the response. If she has an inadequate response then we will have the choice of either Obeticholic acid or Fenofibrate.' I've been on Urso 5 weeks and have felt no different, no side effects or anything yet.

[Newsroom]

Yes Alp, but it took mine at least six months , still not good though. But we are all different.

[Ellyne]

I was in early stage 1 after a biopsy. My liver enzymes were a bit out of range and my dr had me return in 6 months for blood work. I was told that ALP, Direct Bilirubin, were the ones to watch.

[Beatrice110924]

I was diagnosed last year stage. 1 fibrosis and started on Urso. Went back 7 weeks later and very little difference.

Another month later surprisingly my levels were in normal range. Since December they have gone up a bit to 180.

Levels should be 30 to 130 alkaline phosphates. I always get a copy of my blood tests then I can understand them.

Hope this helps.

Ps. Has anyone had iron deficient anemia. I had to have a blood transfusion recently.

[Beatrice110924 in reply to Beatrice110924]

Hi hells456

Just seen your post and yes I have PBC and was very iron deficient and had blood and iron transfusions around Xmas last year. I had top and bottom endoscopies and they found things but nothing that could cause such anemia.

I am waiting for a capsule endoscopy but that's not going to happen at the moment!

I responded to Urso after 5 months and my levels came down to normal then up to 180 and then 200. I am due a 3 month blood test soon.

Hope this helps.