Primary sclerosing cholangitis

[Evaj3]

I have Lupus and PSC which is a rare disease of the bile ducts. My specialist states I will soon get colitis and then I can be put on a trial drug. My gut is telling me that my lupus is attacking my bile ducts and maybe I should be on a lupus drug not waiting for a bowel drug? Anyone else have PSC?

[cuttysark]

Hi Eva,

I have Sjogrens, suspected Lupus and bile duct inflammation. I have had the bile duct problem for many years but they can't decide if it is Primary Biliary Cirrhosis or PSC. I am a frustrating puzzle to them as my bloods don't tell them which it is.

I was under a wonderful gastro who worked with my Rheumatologist but sadly he retired and I am left a bit in limbo as to the future. Currently I am on Depot medrol steroid injections and there is a chance they will try Mycophenolate but with my bloods being negative they are reluctant.My old gastro wanted me treated aggressively for this as he thought it would calm it down ,but now he is gone I don't know what will happen.

Apart from the steroids for me the best thing for the biliary inflammation was the bile acid Ursofalk.

It is interesting they believe you will also get colitis as my Dad had that too and they said that is why this autoimmune problem has come down to me.

Can you tell me the name of the new drug they are going to try? Have you been on any Lupus drugs at all yet, even steroids?

Maybe they think this new drug might help the Lupus symptoms too.

I hope all goes well and you get relief from the biliary problem, I get a lot of pain and nausea with it and have great difficulty eating protein or even any fat at all. It is pretty miserable not being able to eat ,especially protein ,as with being on the steroids I want to avoid too many carbs but that is all I am left with.

All the best,

Cutty

[Evaj3 in reply to cuttysark]

No I'm waiting for a muscle biopsy right now before I get put on anymore drugs. I am on plaquenil urso and I stopped methotrexate and prednisone. The new lupus drug benlysta maybe if my muscle wasting is inflammatory.