Still waiting for vasculitis diagnosis - now liver issues

[hines97]

A month ago I posted that my husband has tested positive for p-anca as well as PR3 and MPO after a long struggle with pneumonia like symptoms. He has had ulcerative colitis for 25 years well controlled. We are waiting to see the Rheumatologist (still another week away) but now we are searching out answers to liver issues - high Alka phosphate and ALT/AST which we are told the vasculitis typically doesn't involve the liver. My husband had an MRI on the liver/gallblader and some inconclusive results though they suspect it may be primary sclerosing cholangitis (PSC) which often times goes hand-in hand with ulcerative colitis. We met with a liver specialist and he has ordered an ERCP where they will do biopsies and possibly open up the duct with a stent. He also said that he does not believe my husband has vasculitis and that the anca results most likely are from the colitis and/or the PSC. However, he will defer to the Rheumatologist that we see next week but I was curious if anyone else had experienced anything like this as I thought PR3 was very specific for confirming vasculitis most likely GPA - wegeners which fits with his lung symptoms. Thanks

[AmyS1]

Google liver and vasculitis. There is an association with GPA. I hope that your rheumatologist is experienced in vasculitis. Do speak to the Vasculitis helpline.

[Suzym2u Moderator Vasculitis UK]

There have been cases of Liver involvement with Vasculitis but usually with Granulomatosis with Polyangiitis. People who are taking certain regular imunnesuppressing drugs for their vasculitis can also develop problems with their liver? Is/was your husband taking medication to control the ulcerative colitis?

[hines97 in reply to Suzym2u]

Yes has taken acecol (sp.?) for years monitored closely with no previous liver issues but the liver specialist believes it could be a reaction to an antibiotic doxy-something that was given to him several months ago when he presented with lingering lung involvement after several other antibiotics. It looks like we will meet with the rheumatologist prior to the ERCP next week. If it is PSC and not vasculitis then we will need to go back pulmonologist to figure out the lungs.

[Hidden]

This is a good link

britishlivertrust.org.uk/li...

I can see why the gastrointestinal Consultant felt it was related as more common diseases have to be ruled out before a diagnosis of Vasculitis is made.

Hopefully ERCP and biopsies will provide answers. Have diseases like pulmonary fibrosis been ruled out as a cause of the chest symptoms?

GPA can affect the liver but you can also get cross reaction of auto antibodies leading to false positives. I hope the Rheumatologist is experienced enough to work everything out!

[hines97]

Thank you for post- not sure if pulmonary fibrosis was ruled out primarily because they were thinking GPA. If it is PSC then we will have to consider it for lungs. I did read a paper last night that discussed PSC with UC and the bio marker of PR3 positive in a high % of those cases with no vasculitis so I guess that is a possibility. So hard to wait.

[Hidden]

My own history with vasculitis has involved liver & pancreas. Have found that many times the doctors get lost in the forest and can't see the trees (us individual patients). Sometimes it is difficult to figure out whether such things are caused by vasculitis or the drugs to treat it.