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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Mom of son with PSC


#1

My son was diagnosed with PSC in December of 2017 at the age of 22…he has been having a very difficult time coming to terms with his condition and has become very depressed. I ,myself am trying to navigate through all the treatments and procedures for PSC to be able to help him deal with any issues that he may have.


#2

Anita,
Hello and thank you for your post. I’m sorry your son is having such a rough time with his PSC diagnosis. I know the fears he must be going through, but I want to assure him that there is hope through this diagnosis. One of the best things he can do right now is to educate himself all about PSC. The more he knows about the disease and the treatments that are available to manage it and give him the best quality of life, I believe he will begin to have a better perspective on things. He’s got to come to the place that he decides he’s going to live his life to its fullest and not let this disease decide how he’s going to live out his life. He needs to pursue his education if that is something he wants to do, get married, have children, LIVE LIFE! Yes, PSC will rear its head up at times, and you just deal with it when it does. There’s no special formula to stop the disease, let him eat what he enjoys eating and do the things he enjoys doing. The more active he stays the better off when things do get bad and transplant is on the horizon.
Please encourage him to participate in this group and ask all the questions that come to mind. It is most important that a hepatologist is managing his care who is tied with a major transplant center. Don’t just stick with a GI, but go to that hepatologist and let him/her take care of all his treatment. This is not something he should be ashamed of. The more of his close friends and family who know of his condition the more of a support system he will have when things get tough down the road. This is not the time to get depressed but this is the time to grab this thing by the horns. I caution you in letting the doctors put him on antidepressants, especially Zoloft. Of course I don’t know your son personally so am not familiar with his overall health and mental stability, but if he’s a normal 22 year old young man that is depressed only because of this diagnosis, putting him on medication to calm his anxiety is not what I would recommend. Of course the hepatologist would be the one to make any medical decision call like this.
If he wants to talk sometime or correspond privately, just drop me a private message through the forum and I’ll be in touch.

Mark
PSC 2011 / Liver Transplant 2015


#3

Hi Anita, my 20 year old daughter was diagnosed the month before your son. I know exactly what you’re going through. BUT, we found amazing success with oral vancomycin. Im not sure your son’s specific case but my daughter has small duct so her bile ducts are fine, but her liver was very damaged, transitioning to cirrhosis (her doctor described it as her being on the edge of the cliff about to fall in because once the liver is in cirrhosis, it can’t heal and she would experience all the pain or suffering). She had no symptoms yet, except she stopped having her period which is why we did a blood test to begin with which discovered her skyrocking liver numbers, cholesterol, and cancer markers. 5 weeks after staring the drug (she took 250mg ANI brand 4x a day) all of her blood levels were normal (including GGT), the next week, after a year’s absence, she got her period. And, after 5 more months, she had a fibroscan that showed her liver had healed completely. Totally normal. Im not saying everyone has such success, but at least it’s hope. And it can do wonders. There are about 8 doctors in America that will prescribe so it’s hard to find (ours in in NYC). But perhaps you can bring the latest research (there are many articles on the internet about the success of oral vancomycin) and beg your doctor to at least test this drug for 6 weeks (there is no resistance with this drug and my daughter, and most, have no side effects). Make sure you get ANI brand from the pharmacy, walmart special orders ours and it takes an extra day. Good luck and let me know if you have any questions. Joanne


#4

Joki,
Thank you for sharing your experience. I should let you know that we live In Alberta, Canada. I am lucky enough that my son is being cared for by one of the top hepatilogist here.My son’s bile ducts are what is being affected.As of right now he has an external bilnary drain that drains directly into his liver.He doesn’t wear a bag but he does have to flush his drain daily. He didn’t show any signs of health issues prior to having jaundice in September 2018.He went to the doctor and they sent him to hospital where they thought that he had cancer.After a number of tests and 5 weeks in the hospital they released him from hospital with no diagnose expect liver failure.He has done a number of persidone treatments in the early stages of treatment before being diagnosed with PSC in December of 2018, the hepatologist stated that this wouldn’t help his condition, so he has stopped taking persidone. My son is now just taking vitamin D and calcium supplements. Again thank you so much for sharing your experience.