So my husband was diagnosed with PSC last year, he’s only 28. He has bouts of being unwell but generally feels tired all the time but still has to work a physical job. He has only started to feel itchy within last couple of weeks. He was given some cream from the doctors but it hasn’t done anything so I think he needs something stronger. It’s so bad it stops him from sleeping some nights. He also has started vomiting quite frequently. I don’t think it is related to alcohol as he hasn’t drunk enough to warrant being sick and he tries to stay away from it anyway. He had chills in the night yesterday after vomiting and being incredibly itchy.
I wonder if this is what they call Bacterial Cholangitis - a PSC flare up?
Has anyone ever suffered with this too? If so do you have any remedies? Doctors don’t always know what to do so wandered what your thoughts were!
That is a normal reaction to his disease. Look to get into social security disability if lost his job. Stay strong. God bless you. This doctors today don’t know ho to deal with it. I am going to Mayo Clinic that seams to know better how to deal with this disease.
Jbird,
Welcome back to the forum. I’m sorry that your husband has been feeling worse of late. It is normal as PSC progresses to feel more fatigued. I worked full time my entire time with PSC and came home many days and just collapsed in my chair till supper time. I do believe though that pressing on and working right up till my transplant gave me more time. I know we are all different. Is your husband under the care of a transplant hepatologist, not just your local GI? If not, I’d recommend that you do so as soon as possible. If he is progressing more and more he needs to be in with the right physician who can get him on the transplant list when the time comes. He may have a blockage that needs to be cleared by ERCP. If he hasn’t had recent labs I would get those done, if he’s not had an MRCP in the past year I’d recommend that as well. The labs and MRCP will give a greater indication if ERCP is warranted. For the itching, ask the hepatologist about prescribing Rifampin. I was on 300 mg twice a day for the years I was with PSC and it gave up to 98% relief from the itching. Every patient responds differently to different remedies, but I’ll say this, no cream, lotion or potion ever got rid of my itch.
As far as alcohol, it is imperitive that he not take one drop for any occassion at this point. It will only make his liver condition worse, and if he is far enough along as it sounds, his liver doesn’t need any other toxins that it has to fight. He needs every advantage you can give him. Also, to be placed on the transplant list he cannot have alcohol in his system at any time. They will screen for it and will kick you out of the program if you continue once they list.
If his condition worsens and he has fever over 101.5 to 102.00 get him to the ER. Tell them he is most likely having a cholongitis attack from PSC liver disease. Take care and do let us know how things are going.
What worked for me for itching was being prescribed cholestyramine packets and eventually little tubs of it with a scooper. I’d take that twice a day for a few weeks just to get my itching to a tolerable level. That alone didn’t help me sleep though. I’d still have trouble itching at night so I started taking benydril two tablets a night to put me to sleep. cholestyramine didn’t work instantly for me. I had a high bilirubin count of 7.5 and it took a couple weeks before I was itching considerably less but it did work!
I truly sympathise. Itching took over my life. Cholestyramine (Questran) powders helped initially. As the itching got worse I was prescribed Cetirizine Hydrochloride (an antihistamine) unfortunately that didn’t help. In the end the damage to my skin made me high risk for infection. I had open cuts all over, particularly on my back, arms and legs. My bedding and clothes were always covered in blood. During one hospital admission doctors witnessed my distress and prescribed Hydroxyzine which acts like a mild sedative. They hoped that the sedative effect would make me less inclined to scratch, that didn’t work either. After another hospital visit, whilst admitted covered in open scratches and wounds, I was prescribed Chlorphenamine this made a slight difference for a while. In time I needed something even stronger. I was so desperate I searched the internet and eventually found a drug called Rifadin (Rifampicin). Consultants were initially a bit reluctant to prescribe it as it can have adverse effects on hepatology blood tests. I literally begged them for this drug, I was so desperate. At last it has made a difference taken in combination with the Cholestyramine (Questram) 4g x 3 packets daily, Chlorphenamine 4mg every six hours and Rifadin (Rifampicin) 2 x 150mg daily. As for your husband’s chills, is he shaking? Patients with defective livers are prone to infection resulting in rigors. You can have a sky high temperature and will feel freezing cold. If this happens again to your husband I strongly recommend that you take his temperature. Is your husband on the transplant list? If he is he will not get the go ahead if he is still drinking. Even a small amount of alcohol will cause further strain and damage to his liver. I got diagnosed with auto immune hepatitis at 21, later on I was diagnosed with PSC so had two liver diseases to contend with. I know from experience how shocking it is to be given such bad news about your health at a young age. I am now waiting for a second transplant so know the process quite well. I am very surprised that your husband’s consultant hasn’t told him not to drink at all. Please keep a thermometer to hand in case your husband gets these flare ups again. If his temperature gets very high you need to seek medical attention quickly so that he can be given intravenous anti biotics. Best of luck.
Itching and cholangitis are part of the ordinary course of PSC. I agree with the advice people have given here. I was nearly insane from itching and had scabs and bleeding all over. Questrin worked okay for a while. My hepatoligist would not prescribe rifampin until we tried all options. Light therapy at a dermatology clinic. That worked for about six months. I then went to a very skilled acupunturist and she cured the itching. I don’t know anyone else who tried acupuncture but, 9 years later still no itch.
In the USA a transplant hepatologist does not give long-term care. Instead one sees a clinical hepatologist. There are a few hospitals in the US and Europe that do PSC research. I would recommend seeing a hepatologist at one of those places.
If your husband has chills and fever over 102, definitely go to an ER because he might have a blood infection, which can be fatal. He will get intravenous antibiotics and probably an ercp to treat a blockage causing the infection. Also, ask your doctor for a CIPRO prescription to keep with you. If you get chills, fever, vomiting or other cholangitis symptoms, you can start the oral CIPRO and possily avoid a trip to the ER. If I am away from home for even one night, I bring my CIPRO in case I get a surprise cholangitis. I’ve needed twice.
I wish you the very best and hope his illness progresses slowly. I’ve had PSC for 18 years and still don’t need a transplant. Hope for the best.