My husband was diagnosed earlier this year. The PSC was discovered after a yearly wellness test at work. His liver enzymes came back high and one thing led to another. He has had no symptoms and overall has been feeling great. However, two weeks a ago, he was experiencing some abdominal pain so we went to the ER. They ran an ultrasound to check for gallstones and that was ruled out. They gave him an MRI and a HIDA scan that came back abnormal due to some possible issues with his gallbladder. Over the next few days, his pain went away and he never had a fever. They recommended following up with his specialist. We did and have an ERCP scheduled for 12/11. However he is not feeling well. He says he doesn’t feel terrible, but he is experiencing heartburn and he is nauseous. He is also tired, but that might be because he is up at night with the heartburn. The last few days he has had diarrhea and might be experiencing mild jaundice. He still hasn’t had any fevers. The ERCP is a few weeks away, we have reached out to his doctor to see if it possible to push it up. Is there anything we can do in the meantime?
Ames,
Thank you for your post and welcome to this PSC community. It sounds like you are already on a good path in your husbands care. Hopefully you have him set up with a hepatologist by now, if not I strongly urge that moving forward. Especially with the ERCP procedure, I’d discourage you from having your local GI from performing this procedure. I’d be sure it’s done by a specialist in this advanced endoscopic procedure to reduce the risk of pancreatitis. It’s an invasive but very necessary procedure for the PSC patient. Hopefully once he has his first one it will give him relief for a good amount of time.
As far as heartburn that is par for the course with this disease. I’d ask his hepatologist about prescribing something like Protonix, which is a proton pump inhibitor. I was on it during my whole time with liver disease and continue even post transplant. It does help. I take it at bedtime. This will help to control the heartburn. For the nausea, they can prescribe Zofran which was helpful to me. It’s a non drowsy anti-nausea medication. I also kept bottles of ginger beer. Of course this is non-alcolholic and we purchased it I believe at Whole Foods. It’s rather strong but it did help with the nausea. You may find as things progress that certain smells of food cooking, even discussion of food or grocery shopping may bring on nausea. You’ll need to be creative in all this. My wife ended up cooking on the back porch when she had to do stir fry or cooking hamburgers or other smelly type food items. It was helpful to me and I appreciated all her efforts.
For the diarrhea this is going to probably be an ongoing problem with his PSC. The issue is the bile is not draining out properly due to the strictures in the bile ducts which doesn’t allow the fats to break up properly. Then there are times when what I called a bile dump when you get too much at one time and have similar effects. To be honest I took the generic immodium caplets just about every day at times just to keep it under control. He’ll have to work out what he can tolerate the most and work with that. As the disease progresses it will be important to maintain a good protein intake to help maintain muscle mass, etc. I’d encourage him to get in at least 30 minutes of exercise a day even if it’s just walking around the block. Nothing strenuous necessarily but to keep his core strength up is vitally important down the road.
Please feel free to ask anything that comes to mind. You will need to be his advocate with his doctors. He’ll need all the love and support you can give him. This disease is a family affair and the more that understand what PSC is the better for everyone’s well being to help your husband. Take care.
Mark
Thanks for all the great information!
We do have him set up with a hepatologist. We live right outside Chicago so we are lucky enough to have easy access to specialists. He is seeing someone at Northwestern. We actually saw him the week he went into the hospital, but since there were no issues/pain the plan was to continue with annual MRIs and bloodwork every six months. I know that we should look out for fevers, but aside from that and pain, what else should I be looking for. My concern is that something is going to happen before we can get in for the ERCP. I am trying very hard not to be an overbearing wife, but I want to be informed!
I second what Mark says! What really helped me was that I was fortunate enough to get a hepatologist who worked directly with a transplant clinic…so as things progress, I switched offices from his normal practice to the transplant office, but kept the same doctor.
I’ve had about a dozen ERCPs… sometimes scans would look fine because there were no stones, but in my case there was “sludge” in my bike ducts. It doesn’t always show up on scans because it’s not quite solid.
Not everyone gets bad enough to need a transplant…so don’t panic. A good hepatologist is key to slowing down the disease and knowing when to consider transplant.
Hello again,
I’m glad to know that your husband is under a hepatologists care. That is vital with this disease. As far as what might happen before the ERCP the main thing is that if he gets a fever over 101.5 take him to the ER, or at best call his hepatologist’s office if during office hours. Did the doctor give him a standing prescription of an antibiotic like Cipro? If not, I’d ask for that and keep one filled all the time. That way if fever does start, you get him started right away on the antibiotics. Then if you can reach your on call doctor with the hepatologists office they can tell you whether it warrants the ER or not. But if the fever continues to climb definitely get there. It is an indication of a cholangitis attack/infection. It may start with chills and fever or both/and.
One thing that might help me and others get a better idea of where things stand with him, would you mind sharing some of his lab results. Mainly the CMP labs such as the following. Thanks.
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Bilirubin Total
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Serum Sodium
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Serum Creatinine
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INR
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AST
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ALT
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ALK Phos (Alkaline Phosphatase)
A heating pad helps with the RUQ pain and lower back pain, which is most likely due to a bile duct blockage. For pain, I was told no more than 3,000 MG of Tylenol in a 24 hour period. Check with his doctor for his specific situation. Absolutely no NSAID’s which includes Ibuprofen, Alieve, Motrin, Asprin, etc. How about his itching? How much of that is he having currently?
Mark
- Is he on dialysis?
I also agree with Mark. My husband has had PSC for about 9 years but is getting closer and closer to needing a transplant. They are just waiting for his numbers to go back up to put him on a list. If my husband does get a fever we go right to emergency and they know him well enough now that they automatically admit him now so he can have an ercp. Good luck to you. It’s a journey. Always learning with each procedure. We are all here for you to answer questions.
No dialysis. These were his latest tested before we left the hospital on 11/10. He had 3 blood tests during his stay. All but the liver #s remained consistent.
• Bilirubin Total – 2.8 mg/dL
• Serum Sodium – 139 mmol/L
• Serum Creatinine - .57mg/dl
• INR – 1.0
• AST – 346 Units/L low as 77
• ALT – 327 Units/L Low as 166
• ALK Phos (Alkaline Phosphatase) – 513 unit/L Low as 392
Thanks for sharing the labs. I was curious what his MELD score is. It calculated out to a 10 which isn’t too bad yet. If it climbs up much over 12 or higher I’d be seriously considering getting him a transplant evaluation to at least have him all tested out and approved to go on the list just in case the MELD keeps climbing. It’s different in all patients but for me mine jumped pretty quickly in a 6 month time span. Hopefully this is not the case for him, but you want to be prepared for every possibility.
Especially if he keeps feeling poorly after the ERCP on a more regular basis, I’d ask for liver labs every 3 months. Watch for changes in his skin color, more RUQ and lower right back pain, etc. Some may think it’s overkill, but I think it’s good to keep a close eye on things moving forward. I don’t say this to raise your fear levels but at the same time with liver disease it’s not fair to you to candy coat things either.
We are here for you all the way. Do let us know how things go.
Mark
Hello Ames,
I’m sorry you and your family have to deal with this disease. This group is an excellent source of support and information to keep you going, as you may have already found. Mark and Frank gave great advice. We use an RX for the acid reflux/heartburn, Pantoprazole. For nausea, we used an RX when it was real-real bad, unable to stand bad. Before that, we kept on hand Gin-Gin candies, ginger ale (without a ton of sugar), and ginger/lemon tea. I too encourage you to stay close to the team at Northwestern, requesting labs sooner than every six months if your insurance will allow it and asking for an RX for Cipro on have on hand (helpful for us several times). Watch your husband closely. I wrote everything down, doctor visit notes, calls made to the hospital, daily symptoms/behavior changes, questions I had, etc. You are his biggest advocate! I was/am the overbearing wife. (Started out as the overbearing GF trying to educate myself in what I was getting myself into. That turned into the overbearing wife worrying about my partner. That turned into the overbearing caretaker that helped get him through a couple of hard years and to a successful transplant. And now I’m the overbearing nag of a wife trying to protect him from anything that can hurt him again while he enjoys a healthy life again. I’m super annoying!! 
) There’s no shame in rolling up your sleeves and taking this ugly disease head-on for your loved one who could be focusing on getting well, staying comfortable, and enjoying life!! You got this! We’re here for you!
Big Hugs,
Thank you everyone! I’m also very concerned how quickly this all seems to be progressing. Up until October 2018 we was very healthy and always had great blood tests. His jaundice is seeming to get worse. His doctor is having him get some labs today and hopefully we will know more soon.
Also for the wives/spouses/caretakers - I am having a very difficult time mentally managing and processing this. I’m trying to keep my composure but seeing him like this it is becoming increasing difficult. How did you guys handle this on the other end?
Ames, psc generally progresses slowly. Until it does not. I learned that while it was difficult being the one with psc, it was just as hard, if not harder, on my wife. She is not known for her flexibility /handling sudden changes well. Once the symptoms of psc start rearing their ugly head, it can be a roller coaster ride for both, and yes, it was pretty hard on her seeing me go through what I went through.
Focusing on the long term helped, but you still need to get through the daily stuff. On the ERCP, have some ice cream/popsicles waiting for him.
Jeff
My sense is that your concern with the ERCP being a few weeks away is valid. Yes, it is important to have someone who is skilled and does ERCPs frequently. I had a bout of pancreatitis resulting from an ERCP, and it is really unpleasant. And also, it’s my understanding that while an episode is going on, it is best not to delay with the ERCP. His numbers are not sky high, but they’re definitely elevated. And it means that there is infection going on, and you don’t want that to get worse between now and then. Sooner rather than later is the guidance I’ve been given. I’d ask for a PSC liver expert, who can get you in quickly. They should be able to do it.
In general, the symptoms of worsening episode are: pain, fever, jaundice that you mention, but also increased itching, brain fog, sleeplessness, general discomfort and malaise. And for everyone it is different. I am also on one of the PPIs for heartburn, and it is very well controlled, except hen I have an episode, and then the heartburn is terrible, developing to the point of nausea and then to vomiting.
I have a friend who went through a transplant (Hep C not PSC), and got himself very educated about the liver. He is fond of saying that the liver has over 400 different functions in the body. What that means to me is that when it isn’t operating at full efficiency, you might end up with a lot of varied symptoms. But these are the most common ones, at least for me.