PBC-URSO NOT EFFECTIVE: Hello every one my... - PBC Foundation

PBC Foundation

9,480 members8,355 posts

PBC-URSO NOT EFFECTIVE

saeedasalma profile image
7 Replies

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

Written by
saeedasalma profile image
saeedasalma
To view profiles and participate in discussions please or .
Read more about...
7 Replies
PBCRobert profile image
PBCRobertPartner

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 profile image
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 profile image
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 profile image
gwillistexas in reply toQ8Cooper

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

Q8Cooper profile image
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 profile image
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 profile image
Shulsey in reply toShulsey

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.

Not what you're looking for?

You may also like...

Urso for PBC

Hi everyone I'm fairly new to this group and I've posted a couple of times but have never received...

New to PBC and Urso

Hi, I've recently been diagnosed with PBC, seems not a definitive diagnosis but consultant wanted...

urso and pbc

I have been on urso for 14 yrs. it went from $55 for a 3 mo supply to $800 and that's half price!...
jpickle profile image

Diagnosed with PCB stage 4 urso effective?

Hello, I'm new here and recently diagnosed with PCB stage 4. My specialist has given me urso but...
Suzie38 profile image

Hair loss ? Pbc or urso?

I was diagnosed with pbc three years ago - I'm at quite an advanced stage of the disease but not...
Perkywerky76 profile image

Moderation team

See all
PBCCheryll profile image
PBCCheryllAdministrator
janethomas profile image
janethomasModerator
Cupcake1971_ profile image
Cupcake1971_Moderator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.