Hi, I'm 21 now and I was diagnosed with PSC two years ago. I'm in early stage 3 of liver failure as you know its not nice.
Just over a year ago now my liver function was very abnormal and I started experiencing an awful itch.
An ERCP sorted this and I taught all was all was good but over the last couple weeks now the itch is back and its even worse. My bloods show high over function and bilirubin and my doctor (the only one that does ERCP in my region) is on annual leave until the end of July.
The itch is so bad, I haven't slept in 1 week now and not only am I exhausted but I'm so stressed and frustrated. My GP has given me so many antihistamines to try and even a relaxant drug that I'm only supposed to take one of but I have taken two about an hour ago any I haven't felt a thing.
I really don't know what to do, I'm so depressed and I just feel that there isn't anything that can be done.
Please does anyone have any tip or something I can try because I really go on much longer like this :(
Itching sucks.I take colostid which binds all the bile acids in the stomach.It comes in small sachets and you add them to a glass of juice.I was takin 3 a day and it fixed the itching.Im pretty sure it’s the bile acids in the bloodstream that cause the itch.The drug may be called something different in the country you live in but there should be something similar.Good luck.
Antihistamines can help put you to sleep but typically won't help with cholestatic itching. The body also becomes tolerant very quickly so it isn't the most useful sleep aid long term.
Cholestyramine works for some but does not work for many others with cholestatic itching. I personally never got it to work. Another issue is that it can interfere with the other drugs you may be taking.
Rifampin seems to have a much higher success rate compared to Cholestyramine at alleviating PSC itching. Either of these drugs will take time before they start to work so talk to your GP or hepatologist ASAP about getting a prescription.
Treating a blockage or infection:
It sounds like an ERCP made you feel better in the past. The sudden rise in intensity of the itching may indicate that an infection is brewing due to another blockage. Talk to your GP or hepatologist about taking some oral antibiotics (Cipro) for a week to see if this will help knock out a possible infection and reduce the symptoms. If your hepatologist is on leave, talk to his/her office to get a referral for an ERCP doctor outside of your region. Explain the extent of your discomfort and urgency of your case to the other doctor to see if they can fit you in to their schedule. If you get to the point you cannot take it anymore and your doctors are not being responsive, go to the ER (preferably a larger one) to try to get some more immediate attention. This itching is no joke and there is a reason it alone can be sufficient criteria for a liver transplant.
Treat the PSC:
Oral Vancomycin works for z12, it works for me, and it works for many other PSC sufferers not only to eliminate symptoms but also to halt the progression of the disease. It can be a bit of a fight to get a doctor on board for an experimental treatment, but you have literally nothing to lose by giving it a try.
I'm so sorry you have that horrible pruitis....I also had a terrible time with pruitis prior to my transplant in 2010. One of the most effective meds that I tried was marinol, but it will cause drowsiness along with a few other side effects...After a while nothing worked so they put me on Plasmapheresis which is similar to a transfusion...This was the only help in being able to take some of my medicines for the pruitis until the transplant...Now I have the PSC disease again and I am now on Vancomycin which has rendered me itch free and what a blessing that is...I hope this helps...
I’ve had UC and PSC for 16 years. I had about 5 er ercps for blockages. My appendix ruptured so I had er surgery for that and than in January I had another blockage. They removed the stones and suggested I have my gallbladder taken out because I will keep producing stones. So I had the surgery. Itching can be intense at times. I’m on a new medication coliostpol. It’s a tablet unlike quest ran you drink. I think it’s working. I do take some anxiety, antarax and Zoloft to sleep. The Zoloft is new. My liver dr stated there have been studies that it reduces itching. I don’t dare take it during the day. The coliostpol is working but I do have itching episodes. Talk to your doctor and see if there is something they can give u. I’ve itched, torn, scratched my skin until it bleeds.
They suggested that I take Rifampin too but it has too many side effects and monthly blood work. I’m sacred!! Although, this maybe my next medicine when this stops working. I also use gold bold lotion. It helps with the itching. Good luck
Thank you Stephen for your concern, very kind...No I'm not on the transplant list as I do not qualify (had a liver biopsy plus MRI in June 2013 and they confirmed the scaring and inflamation thruout the ducts.)plus the vancomycin has finally normalized my liver labs and I almost have hardly any itching. thanks to vanco....I still have the fatigue that I just can't seem to shake...How are you doing with the pruitis...
Stephen Cox said:
Catherine, I am sorry to read your PSC us back after your transplant. What a bummer. What is the next step. Will yo get another one soon?
Ask your doctor if you can tolerate Rifampin. I take one 300 MG capsule two times a day. You need to take it no closer than one hour before or two hours after a meal. It has been a life saver to me. I've tried many over the counter medications, creams, etc. but the Rifampin is the only thing that brought great relief. Hope this helps.
Hi Ian, I know you posted this awhile ago, but I’m new to this group and I see that you are like me, stage 3, so I thought I’d mention that a few months ago, I had the same intense itching, I was so miserable and I completely understand what you are or were going through. I use to take the spaghetti (don’t know what the tool is called but you use it to for spaghetti) anyhow I’d sit in the bath scratching myself with it, and leave my skin red all over.
The doctor put me on urosiol and I took cholestyramine for a while, and it could have been just that but I started sunbathing, I got a massage like very two weeks, and I would drink dandelion tea! lemon water, 99.9% aloe Vera My bilirubin levels where 6.8 and a couple months later they were down to 2.4, double what normal is but I feel good and I don’t have intense itching anymore.
Thanks for your reply I havent been on this in a while new baby takes up alot of time.
After an ERCP and Stent didnt work they transferred me to another specialist that did a few tests and decided to start me on Rifampicin and cholestogel which took a few weeks but eventually helped with my itching. My Bilirubin has always been high ranging from 22 - 26 but came down to around 16 but itching went.
I can notice the itching coming back now and again and everytime I just pray it doesnt stay I cant go through it again. The specialist said if the itching comes back then there isnt anymore they can do/ no other medications they can try except anti depressants. I told him if it comes back I would rather get a transplant which he said it should be ok to do.
Thanks
Ian
WildCurls4ever said:
Hi Ian, I know you posted this awhile ago, but I'm new to this group and I see that you are like me, stage 3, so I thought I'd mention that a few months ago, I had the same intense itching, I was so miserable and I completely understand what you are or were going through. I use to take the spaghetti (don't know what the tool is called but you use it to for spaghetti) anyhow I'd sit in the bath scratching myself with it, and leave my skin red all over. The doctor put me on urosiol and I took cholestyramine for a while, and it could have been just that but I started sunbathing, I got a massage like very two weeks, and I would drink dandelion tea! lemon water, 99.9% aloe Vera My bilirubin levels where 6.8 and a couple months later they were down to 2.4, double what normal is but I feel good and I don't have intense itching anymore.
First of all, congratulations on becoming a dad! I can imagine how busy that must be keeping you :-)
I'm glad that your itching is now under control. I appreciate the fear of it returning must be quite worrying but try not to think the worst. Enjoy the time you have right now and cross that bridge as and when you get to it. It seems like you have been through a number of treatment options already as far as the itching is concerned and therefore know what to expect.