Primary Sclerosing Cholangitis (PSC)

I had an ERCP on 15th May and unfortunately it didn’t get rid of the scratching. I contacted my Nurse and Specialist. I begged them not to let me slip through the cracks. Both ignored me.
However, The Doctor that performed the ERCP had his Nurse contact me. An appointment was set up for 5/28. When the Nurse saw me, I could see her reaction to my body that was full of scabs and blood from scratching. She wanted to have blood work done immediately, but that Department was closed. She begged me not to fly home to Ireland, but I had my flight paid. I had only 90 minutes to get to my flight to check in etc. I told that Nurse that my own Nurse and Doctor ignored my begging plea to see me before I flew home and ignored me.

Anyway, I returned from Ireland, had blood drawn. I’m now waiting for an MRI on 24th June. Until then, I continue to destroy my body by scratching

@jacinta, Who is monitoring your PSC?

I have a liver specialist and a nurse. The specialist never contacts her patients, nor does she participate in ERCPS. Her Nurse is useless. I just think she doesn’t know the severity of PSC. She likes to use “my chart.”

I forgot to mention that my Doctor thinks twice a year for 10 minutes is enough to see me

I was just curious if anybody out there experienced bad lower leg pain and swelling prior to transplant? Personally I experienced calf swelling and lower leg pain and then post transplant it disappeared.

Hi @sandyjr,

I came across this post about your daughter and thought you might be interested in viewing this video where Mayo Clinic gastroenterologist, Dr. Mark Topazian talks about IgG4-related sclerosing cholangitis or IgG4-associated cholangitis – especially since they mimic primary sclerosing cholangitis.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/rituximab-maintenance-therapy-for-autoimmune-pancreatitis/

@rodney9999 I had a lot of swelling in my feet and lower legs but my liver problem was cirrhosis. Before I knew I had cirrhosis we were traveling and my feet got so swollen that I had to buy a cheap pair of beach shoes to wear, nothing else would go on my feet. Until shortly before my transplant I had some minor swelling and had to really watch my sodium. About six weeks before my transplant my feet swelled again as they had when we were traveling, I could only wear slip-on slippers. I also developed ascites then and felt like I had a barrel around my body. I had lost weight (intentionally) and saved some of larger clothes. If I hadn’t I wouldn’t have had anything to wear.
My transplant came through two months sooner than we expected, what a blessing that was.
JK

@rodney9999, I received my simultaneous liver and kidney transplant for PSC in 2009. I don't remember having a specific lower leg pain with swelling . However I did experience swelling in my legs, feet and ankles (edema) along with fluid accumulation in my abdomen (ascites). I went from being a daily walker to being barely able to walk across the room. I was hospitilized for acute kidney failure, and placed on dialysis. I remember that my nurses had to lift my legs for me because they were so swollen and I was so weak. Physical therapy, dialysis, and my desire to recover, helped me to regain my movement, along with reduced edema. I also had many paracentesis procedures to drain the ascites. Like you, the swelling went down after my transplant.

Rodney9999, Did you have any mobility issues prior to your transplant? I'm curious, Are you a PSCer?

@jacinta, I send you my thoughts and hopes that your June 24th MRI provides enough information for a treatment and relief for your itching.

@rosemarya Your post actually brought tears to my eyes, it made me remember just how miserable I was. About a month or so before my transplant I had an appointment with my hepatologist. I was so miserable when we got in the door of the hospital my husband asked me if I wanted a wheelchair. I said no, and regretted it. My feet were very swollen but I was still able to get some sandals on, with my feet bulging out of them.
The hepatologist looked at my feet and told me that things would get better. I was on two diuretics but they really did not help a lot, or maybe they did and I would have been much worse without them. I cannot imagine being any worse than it eventually got though. That last month or so before transplant really was miserable.
The swelling went down gradually after transplant. I am so grateful to be here today and to be well and feeling strong.
JK