New to Group and Disease, help!

In October 2011, I went to be tested to donate a kidney to a young man in my community and my blood work and levels were great! I was almost a perfect match, but because it was his 2nd kidney his antibodies started rejecting when they tested our blood together. In January 2012, they went to John Hopkins where they have a process to clean the blood. They were told that there had been one anonymous donor that would be a good candidate but they would need to somehow get in touch. That person was me, we had a mutual friend and when she found out what JH said she knew it had to be me and contacted me. I called JH and they wanted to run my labs again. That’s when they noticed my liver enzymes were about 100 points above normal. From that point on they became higher and higher, I began itching to the point I looked like a meth addict. My PCP thought it was environmental, but everything I researched said liver. I ended up at the ER when it was going to be 4-6 months before i could get in to see a gastro doctor. This point my alkaline phosphate was over 600 points above normal. The gastro doc on call had labs ran and wanted to see me in his office the next day. He said he was 99% sure I had PBC and my blood work would confirm it. Well it came back negative, so he wanted to do a liver biopsy and confirm it. I kept asking what if it comes back negative and he said it wouldn’t. Well it did, but he said I still had it. I was hospitalized the day after my biopsy I was throwing up in horrific pain and jaundice. My bilirubin spiked to 21, but no one could figure out what was going on. After a year of this I made an appointment at Duke and it was determined I could have overlap syndrome. For about 3 months the prednisone appeared to be helping but then stopped. So I went off of it. Three weeks ago I had a liver biopsy and a week ago I had a MRCP which both confirmed PSC. The Duke team is meeting this Tuesday to determine my next step. They have some clinical trials but Dr. Berg wanted his team to look at all my chart and make sure that I will receive the next step in care that is best for me. I’m exhausted all the time, I’ve lost about 8 pounds in a month, and now am experiencing allergic reaction to OTC pain meds (Advil and Goody’s powder). Is there anything anyone takes for headaches? Does anyone use essential oils? What vitamins do you suggest? Thank you!

Christine, you are clearly a kind and generous person, since you stepped up to donate a kidney. It's cosmic irony that this led to the discovery of your disease. I hope our members will step up, too, and give you some tips. I am sorry about the exhaustion. I hope the Duke team can help you. Please keep us posted.

Dear Christine,

I, too, had a very rapid progression of my PSC. I was transplanted a year ago. Regarding itching, Cholestryramine one pack twice a day helps. Mix it with a half a cup of cranberry juice. Your MD will need to prescribe it. Phosphorus containing foods and drinks aggravate my itching. You can do a search on line to find out those foods.

Regarding oils and fats, milk fats, especially, make my bowels worse. Coconut oil is the best oil to use like butter and coconut milk is great on cereals. It has some medium chain fats that don't require a liver to be utilized. Virgin pina coladas are a good way to put some weight back on.

Vitamins A,D,E, and K are vitamins that many liver diseased patients are short on. I order mine from Puritans Pride. I really like their probiotic also.

Keep Fighting!

I had to take benydral for the first time today for my itching. My back looks like I have hives but that is just the irritation from scratching. I will get a prescription med for this when I next visit my Dr.

Christine - how are you doing now? How did your meeting with the doc go? Hope you are ok. Did they prescribe you anything for your headaches?

Sissy - sorry to hear that horrible symptom has started to set in for you. I get the odd 'itchy' day and I always wonder if it's to do with the PSC. But mine is nowhere near as bad as what I read about here.

Take care both x