It’s my first time posting here!
Before starting, I would like to thank everyone in this group for all the provided support, sharing the great information and your experiences.
My son, 15yo, has been diagnosed with PSC and IBD late last year, he is otherwise “healthy” looking and physically active person, we live in Toronto ON, Canada but joined this group as there are many caring members and lots of useful information. (anyone else from Canada here?)
My son is under the care of GI clinic of “SickKids hospital” here in Toronto and two doctors, one for his PSC and another one for his IBD are on his case. They have just put him on Sulfasalazine which we have been told is a standard first-line-of-defence for treatment of IBD but we’ve also been told that this drug might have some positive effect on his liver enzymes as well.
We have heard many good things about treating PSC with oral Vancomycin, there are many studies done or underway, but when we talked about Vanco with our own GI doctor, he said as this is not an FDA approved medication for this disease, he is not starting this treatment and encouraged us to wait and see if any approval comes along, since according to him, we still have few years before the severe symptoms kick in and there are many other researches in progress.
May I ask if anyone in this group has any experience with Sulfasalazine? Does anyone know if doctors prescribe Vanco for PSC in Canada? What about effects of Sulfasalazine on PSC?
We are thinking to start a homoeopathic treatment as well, anyone has any experience with that as well?
Many thanks in advance.
Hi Bob and welcome to this PSC forum. Thank you for your post. We are here for you to help in any way we can. There are several on the forum that have some good experience with Vancomycian and I’m sure they will chime in soon. The Sulfasalazine you mentioned, from what I am finding in my research is used to treat UC, but I can certainly see where it may be used to treat IBD. Not sure of it’s effect on PSC though. Has there been any discussion with your sons doctors about prescribing URSODIOL to help with the bile flow? This is not a cure by any means for PSC but it does provide quality of life to the patient. He may or may not be at the point in his disease progression where he needs it, but at some point it will prove to be beneficial. It thins the bile and allows it to flow more freely around the strictures in the ducts.
Regarding homeopathic treatments, that’s something I don’t recommend so I would not have any advice to give you. The liver is very susceptible to damage by some of the cure-all ideas out there. Any talk of liver cleansing diets or such things, please avoid at all costs. His body is going to struggle enough battling the PSC, but he doesn’t need anything that will be harmful to his liver. I’m sure the doctors have told your son this, but make sure he avoids all NSAID’s for pain. These are medications like Ibuprofen, Naproxin, Aspirin, etc. It is safe to take up to 3,000 mg a day of Tylenol, but no more.
I’m glad to hear that he is active. Let him live life to its fullest, plan for his future and be the young man he’s meant to be. PSC will let him know when it’s time to stop, rest, or seek intervention due to blockages. The longer he is with the disease, the more he will understand what’s going on. Please feel free to reach out to us with any questions you may have. We are here for you.
Thank you very much for your reply, your words are heart-warming, encouraging and very informative.
My son’s doctor does not believe that putting him on URSO would help at this time since he is in early stages of PSC. What the doctor and our nutritionist said was keeping a healthy lifestyle (good food, no fast food, exercise and absolutely no alcohol) is the key and planned a 4-months monitoring schedule for him. We want to stay positive, enjoy the moments and wait-and-see what is coming out of medical researches… as everyone knows here, it is not easy all the time, but we keep trying!
Thank you very much again for your kind words. I’m so glad that I found you and this group, it means a lot to me and my family.
My son is also 15, and also diagnosed last year with UC and PSC. He has been on vancomycin and doing well so far. I also would suggest you stay away from herbs. There are some herbs that can be very harmful to the liver.
Thank you very much for your reply, I hope we could stay in touch in order to exchange our experiences about our sons’ disease.
My son’s condition came completely out of the blue last year, high liver enzymes in a routine blood work lead to a one full year of medical exams (lab tests, liver biopsy, MRCP, endoscopy + colonoscopy) and emotional rollercoaster, we got the grim news of the diagnosis in October 2017: stage-2 PSC and mild IBD.
May I ask, how did you find about your son’s illness?
Do you live in the US?
It should be good for him that he is receiving Vanco, our doctor refused to prescribe it and we have not been able to find a doctor in our area who is willing to give us the prescription!
How is your son taking it emotionally?
Does he follow a specific diet? Is he gaining or losing weight?
My son has not lost or gained any weight in the last six months, even though he is following a healthy diet prescribed by a nutritionist and takes vitamin D, we are worried about his normal growth, he had been on the average curve until last year but is falling below since then.
I wish you and your son all the best and good luck,
Looking forward to hearing from you more,
Hi Bob. My son was also diagnosed this past November in Toronto. He was 21 (just turned 22) It happened the exact way for us. Have you gone to PSC Partners Canada? http://pscpartners.org/psc-partners-canada/ reach out to them. They are amazing as is their American counterpart. They know everything about what is going on in Canada.
My son was diagnosed with severe UC in August 2016 and PSC in May 2017.He is currently 14. His doctor immediately prescribed oral Vancomycin. It took from May until October but liver enzymes have reached normal range. He is feeling pretty good. We were told stay away from herbs and supplements due to possible liver issues too. I know it’s scary but people here have been helpful.
Hi Colleen…can I ask how long it took to see improvement of any kind once Vanco started? Dosage?
Thank you so much for your reply, I came across them few month ago but didn’t dig enough, I’ll take a closer look.
It would be great if we could keep in touch to exchange our experiences.
I wish you and your son all the best and good luck,
It’s great that your son is responding to Vanco quite well.
Do you live in the US?
Wishing you all the best,
Hi Bob. I encourage you to reach out to them, they really know their way around the Canadian landscape. They also know most PSCers in Toronto. They have a facebook page as well.
He started in May, immediately after diagnosis. By August we saw shift in numbers and by October all liver enzymes in normal range. He takes 4 250 mg a day. I do live in the US. I have an amazing GI doctor working with my son too. For that we are very blessed. Hang in there.
Sure, I will. Actually, I found through a member of this group that there is a liver meeting this weekend in downtown Toronto and PSC Partners has a stand there, I’m going to talk to them on Saturday.
Thank you so much again,
Have a great day,
Did you meet up with the group on Saturday?
Yes, my wife and I went there and met Mary and Ken (such a wonderful people), spoke about 45 minutes
with Mary and learned a lot.
Among the actions, was joining FB groups (done) and adding my son’s name to
the patient registry. (Still a bit reluctant though… Do you know anyone
who’s registered already?).
Well, I guess that was a great first step, thank you so much for telling me
about it. Feeling that there is some support and talking to people who
either are patient or caregiver helps a lot and we felt that we are not
alone in this journey.
Thanks again and hope to keep in touch.
I’m registered on the PSC patient registry and encourage other PSC patients to add their data. All info is de-identified and the statistics of 1000+ patients are available not only to doctors but also for anyone who has registered. There is a lot of interesting info in there. My numbers are old, but when I last looked about 1% of registered PSC patients had a parent with PSC and something like 3-4% had a parent with IBD (both much higher than average).