Hi everyone I am a newbie here and im so glad to have found this group. My father was recently diagnosed with PSC and I am so worried about him. Initially his jaundice was thought to be caused from his gall bladder and pancreatits. Hes had 3 ERCPs where they have inserted and removed stents and after several MRIs and cat scans and after the last scope we were told he has PSC. He has lost about 60 pounds since the end of June,has very little appetite and sleeps alot! He has I think been referred to a Hepatolgist but their booking clerks don’t return calls so we have no idea how long he will be waiting to see someone. His GI doc said he would be started on steriods. Is this for inflammation? Is there any information/ideas or tips you have that may help him gain weight? he is drinking boost once a day and usually has an ok supper but thats it. I feel like he’s giving up and my stomach is in knots expecting the worst.
Hi CBaker and welcome to this PSC forum. I’m glad you have found us. We are here for you and will do all we can to educate you about PSC and give you the needed support.
My initial concern is that he see a transplant hepatologist as soon as possible. If you are in the States, I would suggest you go to the closest major hospital in your area that does liver transplants and just walk in at their transplant clinic and self-refer him for an appointment with a hepatologist. You need to get under the hepatologist’s care as soon as you can and not continue with the GI doctor. Most of them are just not specialists and especially in the field of rare diseases like PSC.
I’m concerned with starting him on steroids right away. I’d want to consult with the hepatologist first if it were me. Also, the doctor performing the ERCP’s needs to be tied with the transplant center and doing these procedures day in an day out. Unless he absolutely needs to be stinted, I’d ask that that be avoided if possible. They are breeding grounds for infections.
Ask about putting him on URSO. That will help thin the bile so that it flows better around those beaded ducts. I was on 1200 mg a day during my time with PSC. It’s critical that he try and get in some exercise each day, say 30 minutes of walking on the treadmill or around the house. He needs to keep his core strength up so that his body will be strong enough for transplant when that day comes. From the description you give, he may be already be in a progressed state of PSC. Protein drinks are good. He needs at this point to eat anything he will, even if it’s junk food, just to get his caloric intake up and try to put on some weight.
I’d really encourage you to do all you can to get him in with the hepatologist just as soon as you can. Please feel free to ask any questions you might have.
Mark
PSC 2011 / Liver Transplant 2015
Hi Mark,
Thanks for the quick reply. We are in Canada so unfortunately self referral is not a thing here. I work for a Pediatric GI clinic and have spoken to one of the doctors I work with and he is willing to sit and talk to me about this as well and I will see if he can push for the Hepatolgy appointment.
I will get him some protein and try to get him to drink that. I have been encourgaing exercise but he says he feels weak. Probably from lack of adequate nutrition and exercise.
Part of me feels like hes given up hes young 65 but looks so old and has other health issues caused from Asbestosis.
I just feel lost I guess, as if im holding my breath waiting for the worst.
I’ve never had to deal with socialized medicine, but I do hear that they do look at a persons age when determining approval on things. It is very possible for your husband to recover and live many many more years with quality of life if he can get the right doctors and hopefully get on the transplant list when that time comes. I’m so sorry he’s so unwell. Keep encouraging him to do all he can do and push as hard as you can for that hepatology appointment. If your GI folks know the hepatologist personally, ask them to put in a personal word for you as a favor to one of their employees. Please let me know if I can help further.
Mark
I agree w Mark re steroids. They are not effective treatment for PSC. Also stents are usually avoided in US because they must be removed. Balloon dilitation is the newest method for opening clogs. ERCP should not be used for monitoring, only procedures.
I had weight loss with early PSC due to ulcerative colitis. 80% of us have UC or Crohns. Ask his GI for a complete colonoscopy with biopsies because PSC patient are at risk for an agressive type of colon cancer. My hepatologist order a colonoscopy every 18 months Your Dad’s MRIs need to be carefully reviewed for signs of bile duct cancer. Abdominal MRI is the best method for monitoring disease progress and newer types of ultrasound are useful too. Liver biopsy is not recommended because of infection risk.
Another reason for weight loss could be poor digestion because the bile ducts are blocked. My doctor prescribes me pancreatic enzymes (name brand Creon). They help digestion of fat, protein and carbs. Your GI should be able to help you.
Here’s some hopeful news, I was diagnosed at 50 and I’m 68 now. Every case of PSC is different. Many patients have an early crisis but feel much better later. Some people have had improvement with a drug called Ursodial. Otherwise there is no treatment or cure until transplant is needed. I have met PSC patients from Canada and they assure me their care is good.
Because you don’t know how advanced your father’s case is, contacting a transplant hospital is a good idea. Google Mayo Clinics website and search for PSC. They are a PSC research center and provide reliable information for patients.
I completely understand your fear. It is a scarey diagnosis for all of us. But, most older people with PSC live many years past diagnosis. I wish you and you father the best for a quick recovery from this crisis.
Thanks Jennifer,
My dad now has an appointment with a Hepatolgist next month and I will be
going with him. Thanks for all of the great info it gives me some ammo for
the visit in knowing what to ask for and expect!
Colleen
You must not let him give up. I was so depleted at the end that the only thing I had was hope, faith and desire to live and beat this thing. Getting to a hepatologist should be your most important goal. Other doctors do not understand PSC. Try more than one. Transplant hospitals are centers for hepatologists. Waiting for one when you have no time to wait isn’t an option. I am healthy since my transplant. Hepatologists know how to diagnose and treat symptoms and they can tell you the future steps that are needed. Be positive. Get actively involved in finding a hepatologist.