He also said that he didn’t think he needed to do a biopsy or ERCP now because he didn’t see where they would change his treatment plan. He said that the MRIs are so good now, that he is confident that it is giving an accurate staging. He says he would do an ERCP if he sees something on the MRCPs, line the beginning of obstructions in the ducts that he would want to stent. He seemed to be particularly worried about bile duct cancers. The MRCP report had a line in it about lymph nodes being abnormal, but I forgot to ask him about that.
Mark — Thanks. Saw a Hepatogist at Georgetown U. He doesn’t think that the Fibroscan MRI and the bloodwork are inconsistent. He thinks everything points to Stage 3 Fibrosis and Severe Fatty Liver, but that the liver is compensating and functioning well which is why my liver blood work is mostly normal. He says there is no way to tell how long the liver will continue to function well enough to keep the bloodwork normal; might be a couple years might be 10 to 20 years. He wants to do monitoring MRCPs every 6 months, and add something onto the next MRCP that he described would be like the Fibroscan waves while I am in the MRI tube, and some sort of fatty liver differentiation.
Are MRCPs every 6 months common?
Before my transplant, in the early stages, I had an MRCP once a year. However, then I got into a liver study at Duke and they were done more often. As the disease progresses however or if there are complications they will do an MRCP sometimes prior to an ERCP to get a better idea of what’s going on.
Hello from MT-
So grateful to have this forum to communicate with you all. Like many, I am wading through so much information, working on staying positive and strong.
I am Cindy, a 67 year old retired nurse diagnosed with Celiac 3 years ago but know it had been present for years (retrospect huh?!). Last June on a routine physical my liver enzymes were elevated. My doctor suspected
viral but did get started on some testing. I had been having a lot of stomach discomfort, fullness and fatigue. My enzymes spiked very high in January, I experienced clay colored stools, bright orange urine-spilling bilirubin- and intense itching. My liver biopsy came back Autoimmune Hepatitis and the MRCP showed PSC. Three weeks ago I had an ERCP and ended up having a stent placed in the pancreas and bleeding requiring 2 units of blood. They were unable to visualize the ducts as completely as they wanted to.
So…right now I am on Prednisone 40mg as there is significant liver damage that needs to be slowed. I haven’t received the official diagnosis of PSC but think that is probably the next step. I am in the catagory of Serology Negative which I’ve been told is unusual.
I would so appreciate hearing about others experiences and learning from you all.
Has anyone else had a similar experience? I know that having both these diagnoses looks grim and it seems to be a step by step process at this time.
I think the Serology negative classification just means we don’t know the cause of this-understanding celiac does have an impact?
Any insights, information, common experiences I can learn from you all would be most appreciated.
Now that the initial “panic wave” of the AH and probable PSC has washed over I am settling in to a different normal, staying active in a more moderate way and resting when my body allows, which with the steroids on week 3 is a challenge!
Thank you for your support. Just knowing you all are out there is amazing. I’m certain there is a huge wealth of knowledge in this community and I look forward to journeying with you all.
Sincerely,
Cindy