I hope the following will give some of you hope. My wife was suffering with UC and PSC. She was being treated with Pentasa, Azathioprine and Propanol. She did the following, and all signs of UC and PSC have disappeared (she did this on her own, not on any medical advice given to her by her consultants):
- Stopped taking Propanol and had the oesophageal banding done.
- Over a period of three months she completely withdrew from Azathioprine. (We think the Azathioprine was causing the PSC because the body could not fight a liver infection).
- Changed her diet in accordance with the book “Breaking the vicious cycle” by Dr Elaine Gottschal. Now she has withdrawn from Pentasa.
Currently there are no signs on either UC or PSC. Blood liver tests are normal.
Interesting. Can you tell us more? How long had she been on meds for PSC? What stage of liver scarring? What do her docs think?
Please be aware this was not done on our doctors’ advice. We were getting pretty hacked off with the negativity from our consultant regarding PSC. The condition was getting worse. We decided to take make a change to the way my wife was taking medication, bearing in mind the consultant did not have any answers.
My wife was diagnosed about 6/7 years ago with UC. PSC was diagnosed two years ago. She was being treated with Azathioprine 150mg a day, Pentasa , UCDA and Propanol. Her ALP levels were 179, Bilirubin was 137, Albumin was 23. The reading is different in the US. You may need to cross refer these readings. This can be done easily on Google.
Currently her liver blood readings are all normal. We are controlling the UC by following the book "Breaking the Vicious Cycle" by Dr Elaine Gottschall. The diet is strict but does seem to work. In addition we use a probiotic called VSL#3 for the UC. We do not use this much at the moment because my wife does not seem to have any problems with the UC.
As I say, we are not doctors or medical professionals. We have tried this because there seemed to be no hope. In my wife's case we believe the UC is the root cause of both diseases. We believe the PSC was caused by the Azathioprine because it prevented the body from defending itself against infection.
In addition there does seem to be interesting research coming through that Curcumin (a natural spice) can stop the scarring caused by cirrhosis which is the result of PSC. The problem is it is not easily bioavailable. We are experimenting by mixing curcumin with peanut butter to make it more bioavailable. The idea is that curcumin will be absorbed into the peanut butter and this will make it available to the liver. I know this sounds a bit "left field". But we are just using the research out there to see if we can tailor it, to suit my wife’s lifestyle.
Basically, the medical establishment do not know what causes UC and PSC, and they do not have a cure. In our opinion, and only relating to these diseases, we have decided the doctors do not have an answer.
this is great news thanks for posting your story.
here is a bit more information on this diet: http://ibdcrohns.about.com/od/dietandrecipes/p/scd.htm
Naturally, we don't recommend going against medical advice.