psc sufferers

Hello to everyone. This is only my second time writing on here. After two years of illness I am finally on the transplant list, I can see a small light at the end of the tunnel now, such a relief to me and my family. I need to go and have an ng tube put up my nose next week to build me up other wise the doctors said I won,t recover from the op as quick, not looking forward to that. At least I can look forward to my wedding in 5 weeks time now, going to be jaundiced on my photo,s, but am sure it will be a good day.

Thanks for listening to me.

4 Replies

  • Hello Lesley76 - seems like you have had a rough time of it over the past two years. I was diagnosed with AIH two years ago and this was adjusted to AIH with PSC just last year. So far the PSC is mild and AIH controlled through medication - I am very lucky.

    Wishing you the best of luck for your wedding - how exciting! And good to have a focus. Hope your transplant comes through quickly and all the best.


  • Hi

    I had PSC and received a transplant in 2006. I was very fortunate that it is only looking back that I can say I felt tired before going on the list. I was also fortunate that I only had to wait a couple of months for the transplant. I wasn't prepared for how tired and weak I felt immediately after the op, but recovered over the succeeding weeks.

    I didn't find swallowing a NG tube to be too bad. It tickled my nose a bit until the tip turned the bend but after that it was fine. It only takes a few seconds. I'm sure you will take it in your stride.

    I hope you don't have to wait too long for the transplant and that it all goes well.

  • My son was diagnosed with PSC 2.5 years ago. His initial symptom was elevated liver enzyme function values, but then immediately had some full body itching. He is 25 and has had ulcerative colitis since he was 12, which was under control with asecol and 6MP medications.

    Immediately after being diagnosed he went on a gluten and dairy free diet. He also eliminated all alcohol and he reduced his fat intake. His itching stopped immediately. His liver enzyme values went down noticeably within a few months, but were still very much outside the normal range. However, an MRCP one year later showed that the largest bile scarring he had, had been eliminated.

    I was after him for some time to try low dose naltrexone, but because he is drug averse, he would not do it for some time. If you don't know about LDN, I would urge you to do some research about it. He started LDN in November 2014 and within 3 months 2 of his 3 liver enzyme functions were normal and the 3rd was just slightly outside the normal range. He has continued on the LDN, and feels completely normal.

    While it seems that you are far advanced in your PSC condition, I would still suggest you look into diet and LDN combined with other supplements (alpha lipoic acid, selenium, B vitamins, milk thistle, and N-acetyl cysteine, among others) to see if you respond positively. Go to the LDN Research Trust web site, and then also Google Dr. Burton Berkson and look at his videos and related materials concerning use of LDN and ALA to help treat a wide range of auto immune diseases. Yahoo has a user group for LDN, and if you join it you will see first hand how this drug (which is cheap, and has very few side effects and contra indications), has been used for a wide range of auto immune conditions. If you want to correspond with me, I can give you more leads to research LDN, supplements and diet in treating auto immune conditions. My e-mail is


  • All will be good, good luck to you and your future wife for the future...

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