Hello- New To Group

Hello everyone. My husband was just officially diagnosed with PSC on on Oct. 15th and has been going through all kinds of testing, blood work, etc.. for the past 4 years. If his liver counts were starting to elevate 4 years ago I'm wondering if we are reaching the half way point and closer to the time when he may need a liver transplant. So many questions, fears, worries, etc..

Do any of you use Milk Thistle or should we avoid that? He has been on Ursodiol and Hydroxyzine and the hydroxyzine makes him so drowsy. He is very itchy in the morning, but even if he takes a half a pill it's makes him too sleepy at work. Are there any other medications that may help, but not making him drowsy.

Can anyone give me a rough guess as to how long they have this disease before they have had to stop working? My mother suggests he call the social security office to see what his retirement benefits would be and check into disability for when the time comes. So glad I found this group and can be with people that are going through it and also have a wonderful support system that can help me care for my husband as we go through this together.

Tough to say about the timeline, as psc can throw a lot of curveballs. But one quote I have read is that from diagnosis, twelve years seems to be a timeframe that it is common to receive a transplant.

On the work issue, that is so individualistic, I can't say. This @$%@#% disease can cause different symptoms, different ailments so haphazardly I don't think anyone can give a specific.

I have heard that psc is a recognized cause for disability, so when the time comes, that recognition may help the process easier. Your mom gave you some good advice-knowledge is power.

I am not on any medication at this time, and I am not familiar with supplements to offer any advice there.

I take cholestipol for my itching, if it’s mad I take the other but only 25mg

Alternatives for the itching include Cholestyramine and Rifampin. Both have pros and cons. Cholestyramine doesn't get along with many other medications so you need to get creative about when you medicate. Rifampin tends to work in more cases but can potentially cause liver damage when taken long term. Neither will make you drowsy.

Wasn't there a recent study in the netherlands that showed an average of 20.5 years to transplant? I like that number better than 12! I can't seem to find it... Anybody?

I'm so sorry to hear about your husband's diagnosis. I have a 17 year old who was diagnosed at 15. You might look into fibroscan which is a relatively new technology to get a sense of the state of the fibrosis this is noninvasive. Our hospital just got the machine, and we are anxiously awaiting our turn to find out what it shows.

My son is on immune suppression, but he has AIH overlap with PSC. He's also taking vanco. So far that seems to be keeping things under control, so I can't help, but definitely talk to your doctor about options. Hopefully they've discussed the recent results around Urso with you - our doc left the decision up to us as to whether to go with urso or not after reviewing what the recent studies showed. I would clear milk thistle with your doc before trying.

Sorry, I know none of that is very helpful. Just wanted to say hi and acknowledge how hard this diagnosis is for both the patient and those who love them. Take care.