Rapid progression of PBC and scared

[stoowill]

NHello, I am new to all this.  I tested AMA+ 9 months ago had a livergram showing stage 1 Pbc.  Just had another livergram and biopsy done now stage 3/4.  Dr. Upped Urso to 2000mg and my all phos is finally in normal range first time in 6 yeas.  My liver is enlarged at 21 cm and spleen is "tiny".  I have suffered with episodes of severe abdominal pain for years.  I take massive amounts of pain meds during these episodes and get no relief.  Usually take ER trip with iv meds and fluids to break the pain and vomiting.  Is this normal?  Is this a crazy rate of progression.  I am only 36 with a young family at home.  Have been on disability for 6 years now.  Finally know what's wrong but not getting better.  I have started talking about relocating to be near a transplant facility is this premature with this rate of progression?  Any advise is welcome.  I take 2000mg urso b12 injections and 5000 MCG daily, 1200 MCG folic acid,  40 mg methadone for pain, and phenagren and or zolfran for nausea/vomiting.

[badpiglet]

Hi Stoowill,

Welcome & huge long-distance hugs! Hopefully you'll find lots of friends and support on this site.

Suggest you get in touch with the PBC Foundation as soon as you can.  Click on the link at the top of this page and then click 'read more' and you'll find their phone number and e mail address.

pbcfoundation.org.uk/

[kimphoebe]

Hi stoowill.

Yes I was told 2 years ago that I was in the early stage then had a fibroscan which showed stage 3.. I'm still bit confused by this but I have antibody in my blood called gp210 which is supposed to be a more aggressive form of the disease. So just thinking if you know anything bout this. 

[liver-bird]

Hello Stoowill

Sorry to hear you are suffering and so worried.  I too think you should contact the PBC Foundation as they have lots of knowledge and will be able to advise you appropriately.  Keep in touch and let us know how you get on.  Best wishes.  Diane