psc sufferer,s

[lesley-76]

Hello. My name is Lesley, I was diagnosed with psc, liver disease 2 an a half years ago. I am now being put forward for a transplant. would be greatful if there in anyone else on here with the same thing as me as this seems to be a rare disease, I think it might be helpful for me and my partner.

[PeterP54]

Hi

I was diagnosed with PSC in the mid 1990's. It is rare and I do not think that any definitive cause has been identified yet, although I have heard that it may be genetic but you probably know this already. Obviously it was a worry; all my children were under 10 and I was concerned how my wife would cope without me, but I never felt "ill" and due to lack of a definitive tests for PSC, never quite believed the diagnosis.

I did and do not suffer any of the common co-existing conditions e.g. Ulcerative Colitis, Inflammatory Bowel Disease, extreme fatigue or itching so I count myself very fortunate. Hopefully you have been the same.

I was put on the transplant list in Feb 2006 and had a transplant in the April. I was in hospital for about 3 weeks although this was partly due to it being Easter and a shortage of Lab staff to process blood tests etc.

I was off work post transplant for 3 months. My work was cerebral rather than physical and I was not "up to speed" for another month or so. Although I managed to complete the Masters degree that was interrupted by the transplant, I don't think that I have fully recovered my "brain power" (although advancing age may have had something to do with that too).

Post transplant, I have been able to do pretty much anything I want (except lose some weight but that's probably due to an addiction to cake) and was remarkably healthy until 2013. Despite warnings of being susceptible to infections, I don't get colds, flu or any other infections.

I did have a setback in 2013 when I was diagnosed with Lymphoma - a rare (1%) side effect of the immunosuppressant regime. I seem to have fought that off but am certainly more fatigued than before (but would not describe it as extreme). Despite this setback I am fortunate to have had so very few side effects and privileged to have received such a successful transplant.

Hopefully, you too will have a successful transplant without any of the common (or rare) side effects.

[lesley-76 in reply to PeterP54]

Thank you for your reply. Unfortulanty I have all the symtoms of psc, it,s been a long had struggle for me after never being ill before in my life. I hope I am accepted for transplant as my quality of live is quite poor right now. thanks for your reply again and I hope you remaine healthy.

[slck]

My son was diagnosed with PSC almost 2.5 years ago. He is now 25. He has had ulcerative colitis since age 13 which was under control with asecol and 6MP. He had no symptoms when diagnosed; only elevated liver function values. He stopped asecol and 6 MP, as well as any alcohol consumption, but his liver function values did not decrease. He then went on a gluten and dairy free diet. While the liver function values went down somewhat, they were still very high.

He is drug averse, but finally I convinced him to start taking low dose naltrexone (LDN). It is a drug that is being used for a wide range of auto-immune conditions; is taken in doses of about 3 to 4.5 mg/day; is very inexpensive; and has very limited side effects. It re-regulates your immune system. After 3 months, 2 of the 3 liver function values plummeted to normal levels, and the third dropped to near normal levels.

I would encourage you to change your diet to avoid gluten, dairy, and possibly GMO foods, and also to look into LDN. Yahoo has an LDN User Group, and you can get lots of information from the LDN Research Trust web site. Dr. Burton Berkson, has combined LDN with alpha lipoic acid, and other vitamins, supplements and detoxifiers to also treat a wide range of auto immune conditions. You should Google him, read his books on LDN, alpha-lipoic acid, and B vitamins, and watch some of the You Tube videos about him. There is very little out there in the way of treatment that is specific to PSC, however, there is a lot, particularly in alternative medicine, regarding overall immune system improvements.

I assume if you are considering a transplant, that your condition is far advanced, however, the above strategies for improving your immune system show promise, and I would encourage you to look into them and try them all........they generally do not work at cross purposes to other conventional treatment regimens. If you want to correspond with me, I can give you more detailed information.

[lesley-76 in reply to slck]

Thanks for your reply. I will look into the things you have mentioned as I do suffer with ibs