Recently Diagnosed , lupus and PSC

Hi everyone

I am 25 yrs old and recently diagnosed with PSC at mayo , i was diagnosed first with autoimmune hepatitis too. I know very little on this, this might sound bad , but since I was diagnosed with Lupus too, I didn’t think of PSC as a major disease the truth was I had not done any research or received much information from my doctor. I have so many questions, can I live a normal life ? I constantly have itching on my stomach , sometimes it gets better. Do any of you follow any diet ? What has worked on slowing PSC. Sometimes when I run my legs get inflammed and itch is this typical if the disease?I am currently taking azathioprene and prednisone due to the prednisone I have gained 20 pounds. I am so excited to have found this group

Hi Danny-

I am so sorry to hear about your diagnosis. Hopefully getting treatment will vastly improve the quality of your life!

My son was diagnosed with AIH and PSC and was put on azathioprine and prednisone, though not at the same time. The AZ was described as a "steroid sparing" medication, so you might ask about that. However, I wanted to suggest that if you are having side effects of the prednisone, please ask your doctors about oral budesonide instead. It is a little more expensive, but it is well documented to have fewer side effects than prednisone - it certainly was the case for my son. I thought I would mention it because it was a relief for us, and we had to ask the doctors for it. Ask for a bone scan now to get a baseline. I wish we had.

The other piece of advice I have is to take it easy on yourself. This is a lot to digest, and there is a lot of information out there. Take your time, ask for support from your family and friends, be kind to yourself as you digest this. Do you have an individual who can help you collect information and start your binder of records? And attend doctor appointments with you? I would think it would be very helpful to have another set of ears in the room. Even as the mom of a patient, it took me a while to come to terms with this diagnosis, and I think I was too hard on myself. One of my friends who's dealing with a different rare diagnosis told me that she gave herself a year - somehow that helped me a lot when I was feeling angry at myself for my emotions.

Also, do check out the PSC Partners for a Cure website and think about attending their annual conference if that's a possibility for you. We went last year for the first time and will go again.

There are some interesting medications in trial now, and please do read up on the vancomycin protocol. The evidence is still being collected on vanco in adults, but it does seem to offer some real hope in slowing PSC. You can find links and discussion on vanco on these boards.

Others will offer ideas on the itching - we haven't dealt with that symptom yet.

And also about time to transplant, when my son was first diagnosed I saw some numbers that made me cry. Way too few years. However, there was a recent study of PSC in, I think, the Netherlands, which had a very large population study and the time to transplant is now much longer - I think on average about 21.3 years, so hopefully the currently available treatment options are extending, and hopefully, the ongoing research and new protocols will extend this even further.

Take care and don't hesitate to reach out for information or support. I am sorry you need to be here, but glad that you found us.

Thank you, this is a lot of information and the diagnosis breaks my heart cause I have 2 babies one is only 3. I will look more into the information you mentioned. Overall I feel good and don’t even feel sick other than the itching and getting dizzy ,but I read that some people do not have any Simpsons at all. I am also trying to do better with my diet , but I keep failing. I thank you both so much for the information

I do have a Gastroestiologist, however he seems to be more focused on the autoimmune hepatitis, because I have gotten yellow a couple of times, after high doses of prednisone my enzymes are pretty normal. I did get a bone scam and I have sign of ostheoporosis. I have to mention that a year ago I was completely healthy within a week I couldn’t walk or move, it took almost a year to get a diagnose. In mayo the said that they diagnosed me with lupus , PSC and macrocytosis too, at first they thought I had cirrhosis they now say it’s only level 3 hepatitis. It is just crazy to me how in so little time I have gotten so sick out of nowhere, and it seems like any medication I take has really bad side effects. With prednisone I got acne all over , gained weight also lost hair and with azathioprene it seems to be affecting my white blood cells. I guess I’m just venting , I’m so frustrated with the situation, thank you for taking the time

Welcome Danny to this wonderful group. You will definitely find a lot of information here along with friendship/comfort. My husband has PSC. He has been lucky in the respect that he has not had any itching, but from my understanding that is a very commen and bothersome side effect.

I am so sorry to hear about all of the troubles. Good luck and take care!


You sure have a lot on your plate. Sorry that you have so much to handle. I know just getting used to psc took me a long time, but you have another two crosses to bear.

I hope your doc takes it easy on that prednisone. It is a wonderful drug with nasty side effects, as you indicated.

This site is for venting, as we all need to do from time to time, as well as get questions/situations addressed, learn from others and share what works for us.