New member here

Hello, my name is Eric and just discovered this site. I am 49, and was diagnosed with PBC in 2013 after a routine blood panel showed elevated AMA. It was never high, so Dr thinks they caught me in very early stages. Only taking Ursodiol since then, but I have not taken it the past 3 months or so; last time I went to refill my 90 say supply, it jumped to $952 and could not afford that at the time. Time goes by so quick and before I knew it my next Gastro appointment was coming up. I was worried I may have made things really bad and when visiting the Dr, he said things looked ok and not to worry about the medication lapse, unless I was having complications. He did order new US and blood tests, so I will be doing those this week.

I am wondering if anyone else here had been taking Urso for a long time, then stopped for a while and noticed any changes.

Also, has anyone had a drastic cost increase in Urso?

Thanks!

7 Replies

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  • Hello & welcome. But then again sry you have to come to visit us PBC'ers. I was diagnosed in Aug 2012 at stage 2. Went into the ER for unrelated issues & ended up being admitted due to my enzymes were in the 2000's. That's really crazy, I know. I started the Urso immediately & was hospitalized for close to two weeks. About a year or so after, I lost my insurance & had a heck of a time trying to get it back. I was without treatment for around 18 months. When I had everything figured out I went back to my GI specialist to start the treatments again. Everything was out of wack for me. I was at end stage 2 going into stage 3 (stage 2/3). Kept up with my labs & appointments. Then a year ago last May I was down with the flu for a couple weeks. Went back to work for one day & noticed I was very bloated & swelled (belly, hands, feet). My GI ordered a ultrasound. I woke the next morning puking blood. I had entered stage 4 with cirrhosis & three bleeds from small esophageal varicies. They banded three bleeds & found a ulcer. I had a blood transfusion of 2 pints because of loss of blood & was in the hospital again for this disease. My GI referred me to a university heptologist because he was unclear why I had progressed so fast. He, my hep Dr, feels that the time I had without treatment played a factor in the progression & that the Urso was no longer helping on its own. I recently started the new specialty medication called Ocaliva with the Urso. My numbers have again began to drop. Please note, we are all different here, some respond to meds as some do not but it has caused no faster progression for others like it did with me. Im just one of the unlucky😒. But, I push through each day with a smile, or I try. Some days are more difficult than others. Praying things are different for you.

    Stay strong❣️

    Shannon

  • Hi Shannon

    We have 'talked' before and I was interested that you said you had swollen stomach feet etc with a bleed from varises....I was told to look out for this for ascites...my bleed from varises was without anything else...except feeling very sick and stomach pains due to blood in stools etc ..I had 1.5 litres...and lots of laxatives and antibiotic drips etc which were the worst of it all..the wards in U.K. are quite big and open too so although you have maybe 8 beds in a section there were 9 sections! so it is all very noisy especially at night. What are they like with you?

    All the best

  • The hospital I went to through the ER is the one that's in my small home town. I had to be transported from there to a hospital that had what I needed. I was placed into a room on what's called a step down unit. It's a heart floor & the step down unit is just like it says. A step down from intensive care unit (icu). I was lucky because this is a very nice hospital where each room is just one bed. So it was just myself & family. In the subject of the Urso, I am again lucky to have the insurance I have. It covers everything under the sun mostly. It is income based so I pay next to nothing each month. It isn't Obama Care so I pray nothing changes when the head of this state changes things. Sometimes it's difficult to get certain prescriptions covered. Other than that I pay nothing out of pocket for my scripts. Just the monthly fee. Oh, I do also have ascities but was not aware of that until after my bleeds with the small varicies.

  • I've been taking Urso for about 8 months. The labs look better. I've read on this forum that people who stopped taking Urso had seen their labs get worse. Once restarted, the labs improved again. But, you seem to doing OK. For as long as you do frequent blood checks (3 mo or so) and monitor your condition with your Gastro, you should be OK. If things change, you can go back on Urso.

    As far as the cost. I am in the US and it is just terrible for me too. I started with $400/90-day and now I am paying $522/90-day supply. I am retired and this is a big hit on my budget. But, I do it anyway. I am afraid to stop taking urso.

    I wish you, Shannon and the rest of the PBCers the very best!

  • Iagra You have my sympathy with the expensive medication as I am in the same boat here in South Africa and am a pensioner

  • You only mention AMAs as the reason for a diagnosis. For a 'formal' diagnosis of PBC, AMAs 'alone' are not enough. It depends on all your liver function readings too, especially ALP and GGT, but also ALT AST, etc.

    When PBC has 'absolutely' been diagnosed, those who respond well to Urso usually find that their abnormal readings - of ALP etc - will go down. If you stop the Urso, they will go back up. As yet there is no cure for PBC, and until recently, Urso was the only medicine to ameliorate the liver's condition; however new drugs are now available, with much more promising research being done. However, if you definitely have PBC, and Urso was working for you, I'm afraid it has to be taken for life, and if you stop, then things will deteriorate.

    I only have AMAs (the level is not supposed to matter) and as yet I don't have PBC, with no signs or symptoms and am generally in good health.

    NB Your Medics should also have checked you for all other possible autoimmune conditions linked to AMAs (there are different sub-types linked to different autoimmune conditions, PBC is linked to AMA-M2). they should also check for all other autoimmune conditions, and all other liver conditions.

    Sorry it's not exactly cheerful, but I hope it helps.

  • Hi eahicks68

    Glad you found us and hope that someone can help you about the cost of the URSO. I know from other sites that there is a PBCers.org in Texas, USA. They may be able to help you find somewhere where URSO is not so expensive. I believe they have organized a pressure group to lobby the senate about medication costs but I do not know any details.

    best wishes

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