Confused with PBC and doctors

[mek4wlk]

Hello, I was diagnoses with PBC in 2015 and put on URSO. The URSO seemed to make me very bloated, 3 months pregnant bloated. My GI has taken me off of URSO and made it seem like it wasn't any big deal as PBC is a slow progressing disease. My concern is that in 2015 I had a ultra sound with fibro spect done and I was at a F0-F1 which is good. I just had another one done a couple of weeks ago and I am at a F2-F3. I also have just recently been diagnosed with Celiac Disease. Should I be as concerned as I am from going from an F0-F1 to an F2-F3 and not really having a doctor that is too concerned. One more question what is the difference between a GI doctor and a hepatologist? Any help or input would be greatly appreciated.

[Ktltel]

Mek4wlk,

For me, any progression is scary. It should take years for progression. But everyone is different. Some of us progress faster than others. URSO is necessary for sure. I understand some can't tolerate it. So, an alternative should be offered. Something should be recommended. I agree that a hepatologist would most definitely have more experience with PBC than a GI doc. My GI doc sent me to a hepatologist. Ask for a referral. But also find out how familiar your new hepatologist is with treating PBC too.

I was put on URSO initially and couldn't tolerate it. Then after 3 months of being off of it they put me back on it slowly. Raising the dose over a period of 2 months to my optimum level. I tolerated it the second time around. I had to take it with a full meal, not just a glass of milk or a beverage of some kind as some were directed.

Also, there are different brands and makers of URSO. Some are generic or may have fillers that are bothering your stomach. Talk to your hepatologist (doctor) about this too.

It's good that you're on top of the game. Be your own health advocate. The squeaky wheel gets the grease as they say.

Let us know how it goes.

Take care,

Stella

[Shulsey]

Hi, I will tell you that a heptologist will be more educated in PBC than a GI. I still see my GI but after I was diagnose at stage 4 with cirrhosis & varicies he referred me to the heptologist because he was unsure why I progressed so fast from stage 2/3 into stage 4 in a years time. I went without treatment for close to 18 months & this is why I progressed fast according to the heptologist. I was without treatment due to having lost my insurance. When I was able to start back on Urso it no longer worked on it's own for me. My hep started the paperwork for Ocaliva. So I now take Urso with the Ocaliva as a type of booster. I can happily say that it's working so far because my numbers have never looked so good. They still have a ways to go to be right but they're heading in the right direction. Treatment for PBC is very important & the fact that this Dr had you to stop taking it without a care in the world has me a bit baffled & worried for you. You need to see someone who can explain things on your level & that won't just take you off treatment like it isn't important, because it is very important!!! The treatment is to slow down the progression. I would hate to have what happened to me happen to you because your Dr simply thinks it's slow moving regardless if you're on treatment or not. I was diagnosed at stage 2 in Aug 2012, Im now stage 4 with all the bells & whistles. All because I wasn't being treated for PBC! Please, find or ask to get a referral to see a heptologist. It seems that a university heptologist are well educated & great with explaining things in detail. Im not sure where you are but Im in the States & go to Indiana University Hospital three hours away for my hep Dr. It is that important that I travel to get the best. Please keep us posted on what you choose to do. Prayers & best wishes.

Stay strong❣️

Shannon

[GrittyReads]

PBC is a slow progressing disease - nowadays! - because Urso slows it down!!

I would ask for a full copy of all your results, so as to see what all your liver function tests are like, and on what grounds, exactly, they diagnosed you. Once you have got all the info in front of you, I would talk to the trained advisors at the 'PBC Foundation' ... link at the top of the page to their website, where you will find phone and email links - and their website is a mine of information.

Hope this helps, take care.

[PBCRobert Partner]

If we can help, do get in touch directly.

Yours,

Robert.

[krista10_ro]

Bloating might have been the result of your Celiac disease. Eat absolutely gluten free and insist on being put back on Urso or Ocaliva or both. Medication slows the progression of the disease. It's not OK at all to stop the only treatment that works some way. Please go see a more specialised doctor.

[Ballymahon2]

Its a pity you cannot tolerate urso have you tried ocaliva instead i am on urso for past 2 months and so far only side effect is constipation which i have now under control due 1st blood tests since starting urso in march its worrying that you are not on any meds hope you have a good specialist good luck