Hello I’m a new member to this site but this isn’t the first time I’ve visited this site. I was diagnosed with PSC September 2017. I started having symptoms in August with really bad itching. It started on my feet but wasn’t enough for me to really care to do anything about but then it got to the point where I couldn’t sleep because of it. I thought maybe it was just athletes foot or some kind of problem with a simple fix. I used powder and cream on my feet for a few days but then my whole body started to itch. I started losing my weight and my appetite. My girlfriend noticed my skin was yellow and I started seeing it in my eyes.
So she took my to the ER and the guy at the front desk said " Oh look we have a yellow guy!" I gave them a urine sample and then they put in an IV and gave me an ultrasound on my liver. They quickly took me to a different hospital where I could see a team of specialists and stay in the hospital for a few days. I had lots of labs taken to figure out what was wrong with me. The ER had no idea what was going on with me. I had an MRICP done and tests for different diseases to narrow it down. They said they believe I have PSC and possibly auto immune hepatitis and an inflammatory bowel disease. I had to wait a month for the liver biopsy appointment and results. My specialist confirmed that I have PSC and Auto Immune Hepatitis and stage 3 fibrosis.
Six months later I had a colonoscopy and results came up negative for an inflammatory bowel disease. I wasn’t sure how to take the news because I’ve read that people who have UC and PSC do better than people with PSC and Auto Immune Hepatitis. I don’t know if this is really true or not but also less medication to take so I wasn’t too upset.
At the start of my diagnoses I was taking Ursodiol 2 and a half 500mg tablets, Azathiroprine 50mg(sorry I take it and I don’t even know how to spell it), and Prednisone 40mg. I eventually was taken off of prednisone because it brought my levels down some but not enough so I was eventually switched to Budesonide 3mg capsules but my levels are still high even after a year! So now I just take Budesonide,Ursodiol,Azathiroprine, Vitamin D, and Calcuim supplements. I also have Cholestyramine for itching.
I recently had an ERCP and I have an appointment on the 18th to discuss the next plan for my health. I have a stricture in my bile duct but it isn’t bad enough for anyone to do anything about.
I thought I’d introduce myself and describe my situation like I’ve seen many do on this site. I was wondering if anyone else has had this situation where your numbers are NEVER in the normal levels ever? I asked my specialist if there was anything I could be doing to help like change my diet or something. He said diet doesn’t matter with PSC just get exercise and take my medication every day. He said that I should get really good insurance but no matter what if I eventually need a liver transplant no insurance is going to pay all of that extremely expensive bill! Has anyone gone through SSI and worked part time or have you had to get a fulltime job just for the insurance? I don’t know what I should do. My mom wants me to try for SSI and work part time but its no guarantee that I’ll even GET SSI. I thought about just learning a trade just for the sake of getting better insurance through a union job and having job security.
Anyways I should probably end this novel. My next steps are my appointment, setting up new primary care because my old doctor doesn’t take my insurance, and setting up appointments for therapy and dermatologist. Thank you for listening and thanks for letting me be apart of this site.