PBC-URSO NOT EFFECTIVE

[saeedasalma]

Hello every one my mother is suffering from PBC and was taking Urso 250 4 times but it is not effecting her positively, recently her feet is swollen and she was admitted in the hospital due to blood vomit. I am really worried just wanted to know if anyone here faced the same situation??

Help a worried DAUGHTER

[PBCRobert Partner]

Hello.

I am sorry to hear about what your mother is facing. These are not normally listed side-effects of Urso, as far as I am aware.

Would it help if we spoke on the phone? You can call the Foundation on 01315566811 and we can call you back if you wish.

Yours,

Robert

[Wocket]

I found Urso irritated my stomach and made me sick, but Ursofalk doesn't upset me at all. I think this is because ursofalk has a hard casing so it only releases medication in the gut. This is only my experience and I am no expert. Hope this info helps.

[Q8Cooper]

Hi, I had similar response with out the blood. My Alk Phos tripled in a matter of weeks. It was determined that I was one of a very small percentages of patients with PBC that was allergic to Ursodiol.

Kathy

[gwillistexas in reply to Q8Cooper]

So, what now? Will they try something else for you?

[Q8Cooper]

My doctor wants to keep me on Ocaliva for at least one full year before pulling it as there is no new meds for 2-5 years (his words). He wants to do another biopsy to see if that will shed some light.

[Shulsey]

Hello, it has been awhile since I've replied too any posts. But, I feel that I could help here. Im 43 yrs old at stage 4 PBC. I had the same issue happen to me one year ago this past May. The vomiting of blood is due to esophageal varicies, I have grade 2 varicies & at F4 cirrhosis. I had no idea I was at this stage until the blood. When cirrhosis starts you can have hypertension happen in the portal vein of your liver, this causes the varicies to grow. Any kind of pressure put on the liver will then put pressure on the varicies. These varicose vein like things are very thin so they can easily burst causing your abdomen to fill with blood. I had to be transported to the hospital & the areas that busted were banded. I also had to have a 2 pint blood transfusion. Now I go in about every three to six months for a EGD. If there are any areas that appear to be enlarged or bleeding my specialist then band them. I recently had to have five areas banded. This is all just part of the PBC thing. I've learned to accept & live with it. I like to think of it as getting a tuneup every now & again. Hopefully this sheds a little light on it for you.

Stay strong❣️

Shannon

[Shulsey in reply to Shulsey]

I should also add that the Urso stopped working for me. This is when my heptologist added Ocaliva to my daily treatment with the Urso.