I was just diagnosed yesterday. The gastro said that my MRCP showed beading on my smaller ducts which confirmed the diagnosis.
I am a forty-four year old mom of two great kids and wife to an awesome husband. I was diagnosed with UC (wouldn't rule out Crohn's) when I was 26 and also Ankylosing Spondylitis when I was 28. I am HLA-B27 Positive. Last year I was diagnosed with hypothyroidism and I take thyroid medication.
As crappy as all this sounds, I feel good. My UC and arthritis have been mild and I don't take any medication for them. When I was 30 years old I gave up drinking alcohol and made changes to my diet. I don't eat wheat but have not been gluten free. I started to exercise regularly and watch my stress levels.
So here's my (current) plan of action to deal with PSC:
I have called Dr. Cox at Stanford to discuss participating in the clinical trial with Vancomycin. I am waiting to hear back from him.
I have asked for my records to be sent to University of Washington's Hepatology Clinic. I am waiting to hear back for an appointment. I live in a small town and the gastro here does not have much experience with PSC.
I have ordered two Specific Carbohydrate Diet recipe books. Worth a try!
I've decided to remove as many toxins from my daily routine as possible. No more aerosols, hair dye, etc.
I will continue to exercise and work on stress management.
Any other ideas or helpful tips? What has helped you?
I really appreciate this forum. It feels much better to know I am not alone.
Welcome to the forum. Are you doing well in terms of your energy level and not itching too much? I think you have a good pro-active view to manage the things you can change and not worry about the things you can't.
My only tip after reading your post is that it may take a while for you to synthesize the psychological implications of PSC.
I have had PSC for 16.5 years now and am doing quite well. When I look back, I wish I hadn't concerned myself so much with it. Things can go so much better than you expect. I've spent many years of my life living in fear of getting very ill and needing a transplant. In 2004, the GI said I'd need a transplant in 5-10 years. Then in 2014 he said the same thing. But I'm actually doing quite well. They now attach the term "cirrhosis" to my condition but I feel the same really as when it was called fibrosis.
I'm not suggesting that the people who are really suffering from PSC have undue concern about their health. Don't get me wrong. Every time I read their posts, I feel great compassion for them, and fear for my future, naturally.
But if you are doing well, I think PSC needs to be kept in perspective. I don't think we should let a few beaded bile ducts get in the way of good life.
Thank you for your reply. It is nice to hear you are doing so well after 16 years! I needed to hear the words about worrying too much.
I am not really itchy and I am not very fatigued. I don't know what causes some issues I have - like night sweats, is it early menopause related or is it liver? Are my legs itchy because of my liver or did I use a bad razor? Is that gas pain or is it my liver aching? So I find myself thinking about my liver all the time right now. I think that will ease up soon simply because I will get tired of thinking about it.
Ten years ago there wasn't a whole lot to do but wait and see. These days there is a lot more a patient can do, either through formal trials or off-label, to attempt to treat the disease. I think you are on the right track.
If the distance to Stanford is too much of a burden to participate in the Vanco trial, I recommend finding a local hepatologist who is on board with emulating the trial protocol. If it works, stay on it long term.
Thank you for your response. I have read some of your other responses regarding Vanco and I appreciate your insight. Are you part of the trial at Stanford or are you getting the Vanco from another doctor?
I live in Olympia, WA and so it is only a short flight to San Jose. Luckily for me, my husband accumulates lots of airline miles:) My ALP number was normal last time I had it checked and so I don't know if I will qualify for the trial.
And yes, my lovely daughter is a collegiate rower and she rowed all through high school ultimately placing 5th at Nationals. But I am also crew mom to a young sailor as my son sails on the high school sailing team. I am a lucky mom. Are you familiar with rowing?
I don't have UC/Crohn's, so was not eligible for the trial. Having normal ALP, even spontaneously, is fantastic as far as outcome with PSC, but will likely prevent you from participating in most clinical trials and will make determining whether Vanco is effective tricky in the absence of symptoms. I've been taking oral Vanco for about a year through my transplant hepatologist and, for me, it has been nothing short of a miracle.
You have some busy kids and a whole lot to be proud of! I rowed heavyweight back in college - awesome experience.
We are kinda in the same boat. I had two MRCPs done about the same time as you. It showed beading on some of the bile ducts (one large and some small). However, I went to 3 doctors (1 in NYC and 2 in Singapore). No doctor would diagnose it to be PSC since all my liver tests are normal and all the auto-immune tests are normal too. I havent done a colonoscopy yet so I wouldnt know if I have UC/Crohns. None of the doctors have asked for that. They just told me to monitor it every year. I feel the same way you do. If I dont watch myself, I attribute every itch and pain to my liver. I am trying not to or it will drive me and my family insane.
I don't check this site as often as I used to, and I just saw your post. I'm glad to hear that your LFTs are normal because even if you have PSC, that is an indication of a better prognosis.
I had another MRCP done in November and nothing has changed. I had a liver biopsy done in February and it came back completely clean with no indicators of AIH or IGG related sclerosing cholangitis. My ALP is normal, but my ALT and AST are slightly elevated.
My hepatologist now tells me that she's not convinced I have PSC. For now, she wants imaging done yearly (she said it could just be an ultrasound) and blood work twice a year to monitor for changes. So I will wait and see. I have to tell you that having her tell me she isn't convinced it's PSC made me relax. She isn't willing to say I don't have it, but it's still better than a firm diagnosis.
Good luck to you and I hope your health remains good for a very long time!
eliza said:
Hi Crewmom,
We are kinda in the same boat. I had two MRCPs done about the same time as you. It showed beading on some of the bile ducts (one large and some small). However, I went to 3 doctors (1 in NYC and 2 in Singapore). No doctor would diagnose it to be PSC since all my liver tests are normal and all the auto-immune tests are normal too. I havent done a colonoscopy yet so I wouldnt know if I have UC/Crohns. None of the doctors have asked for that. They just told me to monitor it every year. I feel the same way you do. If I dont watch myself, I attribute every itch and pain to my liver. I am trying not to or it will drive me and my family insane.
I am glad your bloodwork is so good that your doc is questioning the diagnosis, and hope you keep getting good news.
Jeff Crewmom said:
Hi Eliza,
I don't check this site as often as I used to, and I just saw your post. I'm glad to hear that your LFTs are normal because even if you have PSC, that is an indication of a better prognosis.
I had another MRCP done in November and nothing has changed. I had a liver biopsy done in February and it came back completely clean with no indicators of AIH or IGG related sclerosing cholangitis. My ALP is normal, but my ALT and AST are slightly elevated.
My hepatologist now tells me that she's not convinced I have PSC. For now, she wants imaging done yearly (she said it could just be an ultrasound) and blood work twice a year to monitor for changes. So I will wait and see. I have to tell you that having her tell me she isn't convinced it's PSC made me relax. She isn't willing to say I don't have it, but it's still better than a firm diagnosis.
Good luck to you and I hope your health remains good for a very long time!
eliza said:
Hi Crewmom,
We are kinda in the same boat. I had two MRCPs done about the same time as you. It showed beading on some of the bile ducts (one large and some small). However, I went to 3 doctors (1 in NYC and 2 in Singapore). No doctor would diagnose it to be PSC since all my liver tests are normal and all the auto-immune tests are normal too. I havent done a colonoscopy yet so I wouldnt know if I have UC/Crohns. None of the doctors have asked for that. They just told me to monitor it every year. I feel the same way you do. If I dont watch myself, I attribute every itch and pain to my liver. I am trying not to or it will drive me and my family insane.