Ductopenic Variant anybody?

[Jo_Br]

I seem to be picking up the house phone, it does not ring much and it is always medical stuff.

Addenbrookes have had their meeting about me, that even makes me feel a bit worried.

So as well as being the 5% AMA negative George has read my latest presenting issues and bloods and said there is a possibility that I may have Ductopenic Variant PBC.

So not one hit on here for it, in the search anybody have it, so I do not feel on my own hehe?

The biopsy that I have happily avoided and canceled any appointments at my last hospital and George said 'Well done,' now it seems I need one as the fibroscan does not pick this up.

This is now secondhand info in the telling, my recall of the phone call just now. There is a possibility that the bile ducts are scarring and then disappearing and again it's more severe it has to be treated aggressively. By aggressive if Urso is not working and Ocaliva not being used, I am presuming transplant.

I just want to wake up like I did last year and feel itchy and tired and put it down to 24-hour care for Granny and menopause.

Tagging PBCRobert I feel I need to bend your ear again?

[Jo_Br]

Adding that all my symptoms are presenting quite fast he said, that the xanthelasma, my creatinine being at daft levels as if my body is in starvation and not taking in good nutrition are all factors to make biopsy needed. All my ALTS's ALP's Bilirubin and GGT being high despite Urso. ALT's were always normal and now on a march upwards.

I believe they take several pieces of liver for this too, but I may have been confused as he was discussing the bleed risk and me staying in for longer than some hospitals do.

[butterflyEi in reply to Jo_Br]

Hi Jo_Br

sorry to read your post, I hope someone can give you some insight. Positive thoughts being sent your way.

Best wishes

[PLB21 in reply to Jo_Br]

So sorry to read your post and what's going on with you. I wish I could help. The Urso is working for me, so far. I hope someone can give you advice. Sending you healing prayers.

[gwillistexas in reply to Jo_Br]

Prayers 🙏🏻

[EileenUSA]

So sorry to read this. I hope you get clarity from the folks at the foundation. Let us know how you're getting on. Sending hugs.

[Suzi8]

Why are your doctors NOT prescribing Ocaliva for you to try?

[PBCRobert Partner]

You can bend my ear any time. If I can help I shall, but George is definitely your first contact for questions...

[Jo_Br in reply to PBCRobert]

I just have a distinct lack of info PBCRobert and in that anybody else who may have this. Under Premature Doctopenic Variant, its a couple of lines on the foundation, all a bit ominous. Is there any recommended reading. I have calmed down a bit now, just feeling alone and maybe how the first PBC'er felt before the Foundation was established. I believe the biopsy may be through my jugular and that again is a bit unknown.