Kgray,
The main purpose for Ursodiol in PSC patients is to thin the bile allowing it to flow better around the beading that occurs in the bile ducts due to the disease. I was on 1200 mg a day of Urso during my time before transplant. I’m sure it’s helping but I’ve never heard reports of it affecting liver stiffness.
Mark
Mark,
Thank you for your response. I guess there is the possibility that his liver spontaneously resolved, but I have a gut feeling it was the vancomycin. I never expected to hear that my son no longer has scar tissue in the liver. ESP, not so soon after starting vanco.
The Mayo doc explained to me at a prior appt that the ursodiol may help to reverse some of the liver scarring over time. I got the feeling she did not want to discuss the possibility that vanco improved Kaydens clinical presentation because she was not the prescribing doctor.
It feels strange getting good news after a series of not-so-good news over the last couple of years. I am excited to talk to the prescribing doctor in June about the results of the elastogram and hear his thoughts. However, I did not want to wait to share the results with the online community because I believe they are so important. Sufferers, parents, loved ones, and caregivers understand how important it is to halt progression of PSC.
Yes, my daughter too, had AMAZING results on oral vanco and went from the brink of cirrhosis to a totally normal and healthy liver in 7 months (plus all blood work went from 10x normal to completely normal by her first 5 week blood draw). Also, her liver was fatty before vanco and that too disappeared. About urso, while her LFTs did come down a bit when all she was on was urso, it was the vanco that made the difference. She is now only taking one urso in the morning instead of one in morning and one in evening (300mg total). I don’t think she needs urso at all because she has small duct PSC so her bile ducts are normal so she doesnt need her bile to be thinned, but her doctor wants to keep her on. Im so glad for you all that vanco seems to be working too!!
Joki,
Thank you so much for your response. It is strange receiving good news when your child is diagnosed with a progressive disease process. My son also has small duct PSC. He takes urso 300 mg in the morning and urso 600 mg at night. His MR Adbdomen MRCP and liver elastogram continued to show mild dilation of the common bile duct w/ irregular narrowing and beading of the right hepatic duct and dilation of the left hepatic duct. As well as stenosis at the origin of the right posterior bile duct and the main left hepatic duct. Indicating stable changes related to the PSC since his last exam. However, he was between stage 2 and 3 liver disease and the fibrosis has completely resolved. He now has normal liver stiffness.
I am hoping that these areas will improve with vancomycin medication therapy? Did your daughter show improvement to the bile and hepatic duct over time as well?
Does your daughter continue to c/o fatigue associated with PSC? My son c/o extreme fatigue, but this may also be attributed to his active Crohn’s disease. Next year he will be attending school on a part-time basis because he is unable to keep up with his school load. He misses several days of school due to pain and fatigue. Does your daughter miss several days of school?
Again, I appreciate your response.
Thank you,
Kim
Hi Kim,
It is so strange how all over this disease can be… it seems no two people have the same issues and progression. In may daughters case, she had no symptoms and we only found out about PSC because her periods stopped when she was 19. She had always had very irregular periods…two in one month, then would skip a month etc and looking back, it was because her liver was so damaged, hormones couldn’t flow. By the time the liver biopsy showed PSC, stage 3 (of four), her liver was “transitioning to cirrhosis” where there would be no chance of healing, and of course very soon, all the horrible symptoms of liver failure would start. They told us she would need to quit college and we would need to move to the midwest where she would have a better chance of getting a liver in time. The doctors told her that basically, she was on the edge of a cliff about to fall off. Her colonoscopy and endoscopy showed very mild UC but no symptoms yet and her MRCP was normal (I thought with small ducts it meant that PSC was contained in the liver but I guess not since your son has small duct but his bile ducts are affected). So, to answer your questions, no, she has never felt fatigued or had any pain due to PSC, and no, never missed a day of school. With vanco, her period came back about 6 weeks after starting (after she missed a years worth of periods) and her blood levels normalized (including her cancer marker which, should be below 35 and hers was 185…in fact, her original Ultrasound and MRI found a lump in her liver and we had to go down the horrible cancer road, even a CT PET scan lit up becasue the lump turned out to be an inflamed lymph node reacting to her liver…it was all just horrible and terrifying…the whole thing had been…as you know. We also saw 4 specialists before finally finding one who would give vanco). About your son, from what Ive read, and I have read a TON, there have been instances where the bile ducts heal when the kids are younger so it sounds like there could be improvement. At the very least, it should certainly stop the progression which is huge. Youre very lucky your doctor prescribed vanco at all because it was enormously frustrating that none of the ones I saw would. Not a chance they said. Anyway, continued success and I hope your son continues to heal and feels better. All the best! Joanne
Hi there,
My daughter (PSC+IBD) was stage 2/3 PSC (diagnosed through liver biopsy) with a high degree of liver cirrhosis and beading (or strictures) of the bile ducts (intrahepatic bile ducts) in 2013. After 5 years on Oral Vanco (1year on 500mg 3x/day and 4 years on 500mg 2x/day, Kabi brand, IV formulation), LFTs normal, colon normal - no active colitis, liver stiffness normal and no beading (strictures) in the bile ducts (for the first time, in 2019). No Urso, only Vit D (50,000 IU/month), Omega (1000mg/day) and Probiotic (Lactobacillus Acidophilus strain).
Hope that helps,
Daniela
Joanne,
Thank you so much for sharing your story with me. It helps to hear from people that have been down the same road (because we don’t know anyone locally with rare PSC). I can’t imagine how scary it must have been to have a cancer scare as well. It is great to hear that your daughter doesn’t suffer from some of the debillitating symptoms. Your family’s success story gives me hope! My son’s itching has improved significantly and I hope his other symptoms improve as well. I think getting his Crohn’s under control will be huge. Please continue to share your daughters progress. Hopefully, more doctors will hear these stories and decide to prescribe Vanco!