Hi everyone. Thank you for allowing me to join your group. My 11 year old son was just diagnosed with PSC. His only symptom is itching, which Urso twice a day has solved. Recent MRI confirmed PSC in small bile ducts. He will be going for testing of his bowels next. I have been encouraged by the posts of those members who have lived beyond 10 years without a transplant. Everything is so new to us and we feel overwhelmed. Has anyone gone gluten free or dairy free with success in slowing the progression? Thanks again.
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Welcome, Flyingcoho to this PSC Forum. We are a group of people who either are PSC patients, have been, or are family members of those with this disease such as yourself. Although there is no set pattern between any two PSC patients, we often see in younger patients a very slow disease progression. If your son is not experiencing any UC conditions I wouldn’t say that switching to a gluten-free/dairy-free diet is going to make any difference. There are of course going to be differing opinions on this. We always tell our members to follow the guidance of your hepatologist. I do recommend you get him under the care of a good hepatologist associated with a transplant hospital such as a university hospital system. Please don’t let that cause you to have undue concerns, my reason is that if they follow him throughout the course of the disease they will be in the best position to get him on the list “should” that ever be necessary. PSC doesn’t go away, but hopefully, for your dear son, it will move very slowly.
I would encourage you to let him continue to be that active 11-year-old boy that he is. Do not draw unnecessary attention to the disease so that he thinks he’s different from any other of his friends. Let him live life to its fullest. PSC will let him know when he needs to slow down or rest, but I think constant reminding him that he is sick is an unwise choice. Staying active is very important and the older he gets even more so. Your hepatologist will most likely want to see him once or twice a year in the early stages of the disease and probably get labs every 6 months. They may want him to get an MRCP once a year as well, but that all depends on how he’s doing, etc.
We are here for you throughout this journey and I want to encourage you just to educate yourselves all you can about the disease as parents and if you have any concerns or questions do not hesitate to reach out to us. We are especially mindful of children facing this life challenge and want to be available for you. Take care and the very best to you all.
Mark
PSC 2011 / Transplant 2015
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Hello. Sorry to hear that you are going through this. I was diagnosed with small duct PSC 15 years ago. I was started on Urso which had significantly improved my labs. I do not have trouble with UC etc. but did experiment with dietary changes gluten and dairy free and was able to drop my Enzymes by 100 points. This did get the attention of my hepatologist. So for me it is worth a try.
My daughter was dx with small duct PSC and UC at age 15. Symptoms began at age 13. We tried everything but nothing worked. She started oral vancomycin at 15 and has been doing great for 9 years with a normal liver and colon and life. I can share clinical papers on this if you are interested.
Thank you everyone for your kind replies. Mark, my son is a patient at children’s hospital in Vancouver BC. He has a gastro / hepatologist caring for him. The doctor has him on Urso but did not mention Vancomycin. Cactus girl am I understanding that the vanco totally stopped the progression of your daughters disease and no further scarring has occurred? That is very encouraging. I would appreciate the papers If that’s easy to get to me. Carol, thank you for your input on the diet. The reason I ask is that I had my son tested to look for food sensitivities and he scored very high on the dairy, egg, and soy alerts. I know it’s not a cure but I hoped to support his immune system any way I could. The doctor said he could continue to eat anything he wanted to. Obviously he doesn’t drink alcohol and we already eat fairly low fat diet. My son doesn’t know his diagnosis yet and I am dreading telling him. His doctor wants results from the bowel test first. I don’t want him to google it but chances are he or his older sibling will. One more question, does small duct ever become large duct? Does psc ever turn into pbc? Thanks again everyone.
Message me you email and I will send them to you.
Yes, yes, yes. I was diagnosed with small duct as well back in 2006. I have been on Urso since 2008 and live primarily symptom free, I did switch to a gluten free diet about 3 years ago, and my energy level is so much better, plus it helped me get to a healthy weight. I am in my 60s, eat very healthy, exercise and no alcohol. I have been at stage 3 now for 15 years, so keep the positive thoughts. Best of luck to you and your son.
Thanks for joining the group! This group has been wonderful experience for me.
I was diagnosed in 2004 with PSC and UC. I turn 40 next month. My liver enzymes have gradually increased year to year, except for my last lab work, which they went down with a Berberine study I was participating in at Vanderbilt. I’ve been on Urso and Asacol for the 17 years otherwise.
I agree that staying active and follow up care is extremely important! I haven’t heard of any benefits of gluten free or avoiding dairy as I’m not sure of the benefits, but I would love to learn more about both of them.
Thank you Suzanne. I’m happy to hear you have remained at stage 3 for 15 years. Am I understanding correctly that you were already at stage 3 when you were diagnosed?
Thank you Eldermen. Will you continue on the Berberine? I’m glad to hear your levels went down.
I have been continuing it as it’s fairly cheap. I’m hoping it helps.
Yes! I actually went fully vegan, just prior to my PSC diagnosis and my colonoscopy prior showed inflammation and after, it was gone. Anecdotal perhaps but there is a lot of research on the benefits of plant based diets.
Eliminating milk definitely helped and eliminating all animal.products helped even more.
Highly recommend. Increase fiber esp. If deficient (SAD is usually deficient). If you can move towards reducing sugar and processed food…even better.
The data you are finding are a bit old. Transplant free survival is largely dependent on timing of diagnosis and whether it is genetically mediated.
There are some more recent PSC conference symposium presentations on YouTube that would be good to consult.
For me, my specialist feels like I will unlikely ever need a Transplant although things can easily shift.
I am only 4 years since diagnosis but I am not in my early years like your son (I am 52 F).
I was diagnosed at Stage 2 ~ so probably have had it for years before and didn’t know it. My condition, other than 2 flare ups, one due to taking augmentin, I have been stable. Make sure you son never gets prescribed augmentin, as it does major damage to your liver. Happy to share anything else you might need, too.
Thank you everyone. What a kind and generous group of people you all are.
Hi all-thanks for the add to this group. I see its so positive and that’s what I really need right now :-(.
My 18yo daughter just diagnosed with crohns 2 wks ago and psc last week. Its been a LOT to take in. She has always been so healthy and athletic then in January the itching started which led to a million doctors and tests, etc. all her bloodwork with exception of her liver enzymes looks good. Her crohns isnt that bad right now (thank god)
We’re still trying to wrap our heads around it all and we’re scared to death as she leaves us in 3 weeks to head to college. The itching wont ease up and he GI only prescribed antihistamine. But we are planning to transfer to a GI/Hep Dr at either UPenn or Jefferson in Philadelphia; appointments are scheduled
I’ll take any advice I can get!! Thank you all-I know I/we will be needing your support as we go through this.
Hi MomofSarah,
When my son started 250mg of Ursodial 2x per day the itching subsided in about three to four weeks. antihistamine did not stop the itch for him but it is what I gave him to help him sleep at night before he was prescribed the Urso. We were also giving him large bendable ice packs to help him sleep, before the Urso. I hope your daughter can get on the Urso too. My son is on tablets but initially on liquid which was awful to get down. The tablets are much easier and he doesn’t taste them.
Momo,
I tried a number of different ways to get rid of my PSC itching and nothing worked until my doctor prescribed Rifampin. I took 300 mg twice a day for 4+ years. It reduced my itching by 98%. It was the only thing that brought sanity to a very bad situation. My doctor first tried Zoloft, for one thing, it didn’t touch the itching, but also it really messed with my mind It’s an antidepressant, I wouldn’t recommend anyone taking that stuff. The Rifampin though really worked. You might ask her hepatologist about this.
Mark
I’ve had one visit so far with Dr. Ethan Weinberg at U Penn (Perelman center). I felt that he wanted to work with me when I was discussing various meds and when to start. Some members here have commented that their physicians are dismissive when considering different treatment options, which makes a person feel even more helpless. I told Dr. Weinberg I wanted to hold off on meds since my labs are normal and I only periodically have some pain, always mild. He was fine with that. There is a fibroscan machine at Penn. If you decide to go there, call ahead and ask if your daughter should fast a few hours before the appt. He may decide at the visit to have her get the scan and she would need to be fasting for a few hours.
Hello, Flyngcoho. My 27 year old son was diagnosed with PSC and Autoimmune Hepatitis when he was 15 years old. Non UC. He takes Urso, cortisone and Imurel, an immunosuppressant. In these 12 years he has led a normal life, has studied a university degree, works as a teacher and he has a girlfriend. Four months ago he started Dr. Siegnalet’s gluten-free and dairy-free diet. It is still a bit early to evaluate, but he is feeling better. Dr. Seignalet reports cases of cure of PSC with his diet. I, as a scientist, am cautious and prefer to wait before evaluating anything, it has only been 4 months since he started the diet and it is too early to draw conclusions. Anything you want to know ask me. Best regards.
Thank you Joal, I really appreciate your input. I will read up on that diet. What stage was your sons liver disease at when he was diagnosed? Has it progressed at all? It’s wonderful to hear he is doing so well and living a normal life. Thank you for the encouragement.