Guest guest Posted June 6, 2006 Report Share Posted June 6, 2006 You have every right to complain and we are good listeners. Only someone who has gone through the first days of learning of your diagnosis and the horrible itching can know what it is like. It isn't a death sentence, after I came to terms with the condition and looked around and thought I have this day, none of us know what the next day might bring, then I begin to live and enjoy everything around me. Also there is help for the itching, I tried it all and most Dr's. try the milder things until they put you on Rifampin. My Hepatologist suggested and prescribed several things, I used every cream or ointment available, the only help I got there was Sarna lotion, which will cool the itch long enough sometimes for you to get to sleep. I'm an older person speaking but I think if I was younger I would still think positive and if I wanted to start a family I would do so. There is no data that I know of that says this could be inherited. When I was diagnosed in l999, the first web site I explored said your life span would be probably 3 years, well as soon as I found the support group I found many who had survived 20 to 25 years and still going, some with symptoms and some without. I started out with a high alk phos of 850, after being on Actigal(brand name), I take the generic for 7 years my alk phos is not 200, a big improvement. I have lots of digestive problems which may be related to PSC but not anything the Dr. thinks is related to the liver disease. I do about anything I want except I watch my diet very closely, no fats or low fats. I eat very little meat, mostly vegetables and fruits and they have to be cooked. I want to cheer you up because it could be worse and you might be around longer than some of your buddies, who knows. I believe in prayer and I know within my heart God will give you the strength for this PSC just as he did me. If you decide to have a child, that great joy in your life would give you the strength to go on. I will pray for you and all others in this group, you have to be tough but you can do it. Best Wishes Martha from Mo. Quote Link to comment Share on other sites More sharing options...
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