I want to introduce myself, I am the mother of a boy who has overlap syndrome of psc and aih, along with uc.
It started last fall, my son, then eleven, said he had bloody stool and diarrhea. We took him to the GI, which assumed it was constipation, and put him on constipation medicine for three months. Nothing cleared up. After the three months he started having some pain and we went back and took some blood tests. The showed elevated liver values, and cytolomegavirus. He referred us to the hospital. We saw a gastroenterologist. (not sure if spelled correctly, we live in Northern Europe)and they wanted to take a gastroscopy, colonoskopy and liver biopsy. Which we did in mid March. They could tell it was UC, moderate. And a couple of weeks later they explained he likely has overlap of aih and psc. He was then put on prednisolone 40 micrograms for 4 weeks. Some liver tests improved. UC improved. But when he tapered below 20, tests got worse again. He started Imurel after a month so he’s also on that. We have started a gluten free diet, high dose vitamin d, omega3, calcium and magnesium. Currently looking into milk thistle. And pre and pro biotic. I am making fermented drinks for him.
He has fatigue, joint pain, and 10 kg weight gain. Depression because of everything. Currently on 17.5 prednisolon.
We are lucky when it comes to transplants to a certain degree, one month waiting for a transplant and I thing they do it before you get too sick. We have a national research center for Psc, which is very lucky. But I understand they don’t transplant after 65, and is restrictive when liver cancer has developed.
Glad i found this group, it’s very good to communicate with others with the same issues.