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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.

Hi flyingcoho,
My son was treated at Vancouver child’s hospital 4 years ago. My son went on urso and
I asked that he go in Vanco. My request was
Granted . My son has been doing quite well these last 4 years and is entering his 4 year of
University next month.
I would be happy to connect with you to discuss further.
Charmaine

Hi Charmaine, thank you for connecting. I’m so glad to hear your son is doing well! Who was your son’s doctor at children’s? Has your son had any side effects on the Vanco, or ever had a flare? Has his disease progressed at all? We are hoping to connect with our sons doctor this week. Please feel free to PM me if you prefer.

Hello again. My son has had his PSC for 12 years, and in that time his liver condition has worsened, that is true. But so far he has lived a normal life. The doctor told us that his disease will end with a liver transplant. A few months ago my son decided to change his diet and start with Dr. Seignalet’s diet. He is now feeling better. Soon he will have a new blood test, and then we will be able to assess whether the diet is working.

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Hi Flyingcoho, I’ve been following your thread and just want to speak up briefly now that I see your attention is on Vanco. There is so much good and alternative advise to help people on this site, I respect it all, but I can speak for Vanco from personal experience and I would be remiss if I didn’t throw in some emphasis said by others that it deserves your focus. Note that that it remains “medically unproven” by medical standards (a decade of multiphase, placebo controlled trials, etc. is necessary for on label use), expensive and a bourdon to insurances, and contraversial since it is a controlled antibiotic - these are the explanations why it is rarely mentioned from doctors and they change the subject when brought up (often it is by hosptital policy, risk mitigration to say “not until fully proven”). Current sufferers can’t wait for that proof. You have to sell Vanco to the doctors not the other way around. Be firm on it. In the addition to the medical papers on Vanco for PSC treatment, read every thread on this forum where Vanco is mentioned - there is as much information for you in here than you can get in the published papers - sometimes more helpful advice. So I don’t have to type it again, see this one of mine with links to medical Conference Q A with Ken Cox posted by JTB in which parents of remmissioned kids get up to advocate for approval of the drug. Also a website of parents who are trying to overcome the hurdles to get attention to Vanco as an orpan drug. Go to your Doc well armed.

Thank you Rjm much appreciated

Still playing with link function, this is post I was referencing…

Great information and excited to hear how this diet impacts his health!! Best of luck to him!!

Thank you for this info!!

Thank you!!!

Thank you so much! Meeting with Dr tmrw so definitely will talk to him about this!!