New to the group but not PBC - PBCers Organization

PBCers Organization

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New to the group but not PBC

OdinsMom profile image

Hello everyone. Just a brief something about myself. Diagnosed with PBC stage 4 in 2007. Wasn't able to take urso but did well for nearly a decade. Had liver transplant in 2016 and now have (probably) recurrence. Basically I've run the gambit and going for round 2. Everyone have a great day!

19 Replies

Welcome!

Welcome and sorry to hear of your reoccurrence. Hope you have a good day as well.

Odinsmom, hi. Did the Urso just not work or were you having major side effects? I am sorry that you have a reoccurrence of PBC. Have your Dr.s mentioned Oclavia as an option?

I was a sluggish responder to Urso and we fought to get the Oclavia, I am now myself again...this 5mg pill gave me back not just myself, but my life as an active mom and Yaya to my 8 (soon to be 9) grandchildren.

If you don't mind I would suggest calling Interconnect, they are AMAZING. I now have a whole army of individuals that are always ready to help; nurses, pharmacists and a caseworker that went above and beyond to help me get Oclavia.

If you would like the number it is18446224278. What can one phone call hurt, and you never know...they may be exactly what you need.

OdinsMom profile image
OdinsMom in reply to Slnall

Urso didn't do much and had severe side effects so was and is off the table. Tried all the different formulations as well the first time around. We're working on Ocaliva. I'm a little leery as they have NO info on post-tx using it. I've spoken to Intercept already. There's not even a paper on it being used post that anyone could find. As recurrence tends to be more aggressive they also are thinking I went from 0 in December 2017 to stage 3 January 2019. Scheduling another biopsy in the next couple weeks to make sure it's not gone further before even considering Ocaliva and have one of my dr checking with the Medical Director of Intercept on any info they might have for post tx. It's strange as I felt great when they said my numbers were through the roof (about what they were 3 days before tx) and now feel like crap with all the steroids!

OdinsMom, I am so sorry you are going through this again, the frustration must be agonizing. Please let me know what Interconnect says, after I replied I also looked for post transplant results for Oclavia...couldn't find any, I should have researched before responding. I hope your days get better and they can find something to help you. Please know I am here, even if it is just for you to vent to someone who gets it...that helps more than anything sometimes, just getting worries, frustration or anxiety off your chest and out of your head. We ALL need an ear or shoulder, you can use mine.

Wow that’s terrible! If you don’t mind me asking where are you located and how old are you?

OdinsMom profile image
OdinsMom in reply to Cstar1079

Hi. No problem. Will be 60 next week. Living in NH but was in VA when I had transplant

Tzarboy profile image
Tzarboy in reply to OdinsMom

Did you have any pain or sleeping more waiting on transplant?

OdinsMom profile image
OdinsMom in reply to Tzarboy

The last few weeks before tx I literally would fall asleep in the middle of saying something. Very weak and just general all over aches. I did have a period of spasms/contractures about a month before that broke a finger even. Nothing helped that. It was more intense than childbirth

Don't know where to start here.I just join this group.I had a liver Transplant 18 years ago .Had Primary Biliary Cirrhosis.Ok my Alkaline Phosphatase and GGT level are running little high.So they put me on (URSODIOL) 300 MG 3x a Day so now it has started making me Itch does anyone know what to do to stop the itch.Thanks

OdinsMom profile image
OdinsMom in reply to margie161

The itch is probably the PBC. You never had it the first time? Nothing stops it but there are things that may help. Everyone has something different. I used coconut oil with essential oils that are good for your skin. Get a water filter for your shower too ($20 at Home Depot) - it helped me more than anything else. I took hydroxizine when it got really bad-ask your dr for something

I had liver transplant 18 year ago 2001.What kind of problems you having.They just put me on URSODIOL cause Alkaline Phosphatase and GGT lever running high 300 MG 3 X a day.

OdinsMom profile image
OdinsMom in reply to margie161

My ALK PHOS, ALT and AST all sky rocketed. Rejection along with PBC via biopsies. Loads of steroids and numbers are down and waiting on ocaliva

margie161 profile image
margie161 in reply to OdinsMom

My Alkaline Phosphatase are 235 and GGT level is 373 They put me on URSODIOL 300 mg 3 x a day.hope it will bring them down.But has started making me itch after 3rd taking it.Just call my Transplant team waiting for them to call me back get something for the itch.When did you have your transplant.

margie161 profile image
margie161 in reply to OdinsMom

Sorry forgot to ask what is the (OCALIVA) for.

OdinsMom profile image
OdinsMom in reply to margie161

Is the urso the right dose for your weight? Also might be fillers making you itch. Ocaliva is the newer drug for PBC. I can't tolerate any urso. How are your AST & ALT?

Don't know about the weight that just what they call me in.May I ask what is Fillers? Mine AST is 28 and ALT is 20 waiting on my Transplant team to call me back about the URSO.Thanks for reply back.

OdinsMom profile image
OdinsMom in reply to margie161

Weight is the way they figure dose. 13-15mg/kg of body weight. 2.2 lbs to a kg Those numbers are good. Fillers are the ingredients besides urso they put in pills/capsules

margie161 profile image
margie161 in reply to OdinsMom

Ok Thanks for the Information.and replying back.

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