Not the worst thing I've had to live with....

[Suzi8]

I was diagnosed ten years ago and had a biopsy to diagnose PBC and have had two more, five year intervals, to stay on top of things. Also have upper endoscopies to check for varices (varicose veins in the throat and esophagus) every two years. My Alk-phos progressively got worse as time passed and pretty much stayed around 415-460 taking five 300ml Urso/day. In December, my doctor put me on Ocaliva WITH the Urso. It took Alk-phos down to 270ish BUT I broke out in an itchy rash. I decided to stop it for a bit to see what happened And the rash subsided. Went back on it the other day and got the rash, again. I'm at a crossroad of having to make a decision of whether or not to continue.... double-edged sword....

[Hidden]

Maybe if you talked to your Dr about not taking Urso. What stage are you

[Suzi8 in reply to Hidden]

The Urso is no problem, except that it doesn't get my Alk-phos down. It's the Ocaliva that gives me the itchy bumps all over and I'm not happy with THAT part of the medicine. However, it DOES take my numbers down to a better level! Gotta figure out if I want to continue it or not....!?!?!?

[Hidden in reply to Suzi8]

You want to continue to save your life of course. Are you in the USA? What stage are you in? I have to be honest. A few members here pushed for me to not use a GI Dr for my soon to be official diagnosis of pbc with aih. I got a second opinion today and I'm glad that I did.

[Suzi8 in reply to Hidden]

Yes in the USA, Knoxville,TN. I use a wonderful GI who is extremely proactive with my care and I also see a liver specialist at Vanderbilt University Hospital in Nashville, TN so I am big on taking care of myself!! MY body is different than anyone else's so I have to do what I can tolerate and there may have to be a plan b, plan c, plan d, etc.. I Just hope everyone with this disease does well and can learn to do the best with their life and try to be happy... since we have no other choice.

[Pea1234 in reply to Hidden]

Hi jennyhadenough,

I live in Orlando, FL. Where in the US are you located?

[Hidden in reply to Pea1234]

I live an hour and a half from you near Melbourne Fl.

[Pea1234 in reply to Hidden]

Where is your doctor? Are they knowledgeable with PBC? I go to a GI. But I don't think he has any other patients with PBC. He had to research it when I was diagnosed but he diagnosed me correctly. He is a little odd but one of the best at FL hospital.

[Hidden in reply to Pea1234]

My GI knew what to do. I believe he is knowledgeable I just decided to use the Mayo Clinic for my treatment. My GI lowered my prednisone to soon and my alt was at 723. It was discovered by a Mayo Clinic Dr during a second oppinion consult

[Suzi8 in reply to Pea1234]

Knoxville Tennessee 😎

[butterflyEi]

Hi Suzi8

Can you take anything to counteract the Ocaliva side effects?

Is there any chance that as the URSO does not do anything for you that you could try the Ocaliva without the URSO and see if you get the itchy rash - obviously you may want to speak to the doctor before taking any action. I am an itcher so I can well appreciate the unpleasantness of an itchy rash but this PBC is so frustrating when what there is out there to help us is of no use. Is there an Ocaliva help line where you could speak to someone about the drug and how to better introduce it to your body?

Hope you find some way forward, let us know how you get on.

best wishes

[stobin]

Reading your message was like my history. I was diagnosed in 2003 and have had 3 biopsies. Have been using Urso since beginning, but it does not work for me, started on Ocaliva with the Urso and had such a severe itchy rash and couldn't sleep, couldn't eat and was miserable. I took it for 30 days and then told my doctor I could not take it anymore. I have been off for 1 month now and just started back - I am doing once a week for a month and if that works going to every 3 days. I have made the decision if the rash comes back I will discontinue, the quality of my life was horrible. Guess you have to make your own decision on what you can tolerate. I hope it works out for you.

Shirley

[Suzi8 in reply to stobin]

Well that's what I did… I made the decision to stop and see if my rash went away and it did! I just started back taking it and I'm doing it about every three or four days and the rash seems to not be as severe. Sadly this is a trial and error deal and this is the choice for me. Luckily me and both of my doctors are trying to stay on top of this and see what works best. For now that's all I can do.