My name is Santosh Prasad Das aged 31 years.
I m from India. Friends since 2008 I was diagnosed with ulcerative colitis and there after I was under proper medication. Nothing critical in my health only to avoid milk, milk products , high fibre food as prescribed by gastroenterologist doctor.
But in Dec,2019 i got jaundice and I had LFT test where my liver enzymes specially ALP was 1300. Then after having mrcp in March 2020 in the hospital Dr said my liver and spleen has been enlarged. Liver was 17 cm and spleen 13cm. After that I was diagnosed with PSC and they said u need a liver transplant. I don’t have much money to afford the transplant cost. They prescribed me steroids and another medicine for liver and spleen . After that I went to Ayurveda doctor they advised me few yoga’s and medicines . I had done my first mrcp in March 2020. After taking allopathic medicine, ayurvedic medicine and specially yoga which I do for one hour daily I had my 2nd mrcp test in the month of July 2020. My liver size had been reduced to 15 cm from 17 cm and liver reduce to 12.5 cm from 13cm… My jaundice has been reduced to 2.6 form 5.1. Everyday I have normal stool. My liver enzymes has gone down to 250. Only I have slight yellow urine in the early morning… kindly suggest your valuable suggestions regarding my PSC
Welcome to this PSC community. Thank you for sharing your story. LFT’s will go up and down with PSC depending on bile flow. Not sure about the medicine you were given, but if it helps to thin the bile that would account for your LFT’s improving. It may be working similar to what URSO does, but there again I’m not familiar with the drug.
Looking at your most recent labs, run them through this MELD score calculator and tell me what results you get. This will give us a better indication of how far along you are. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
PSC patients will often live for many years with their disease progression rather slowly before the need for a transplant. I don’t think you can get a complete diagnosis of how advanced the disease is with just MRCP. Have you had an ERCP done yet? That will give a real view of your common bile duct and your left and right hepatic duct. Depending on the condition of them this will give the doctor a better idea of how far along you are.
It is not uncommon to have an enlarged spleen with PSC. It’s good you are having normal stools. If you have true PSC you will notice things changing as time goes on. But hopefully you will have many years of relatively normal life. I encourage you to continue right on with living life and planning the future. Don’t let this disease stop you from fulfilling the hopes and dreams you have. We are here for you to help in any way.
Thank you very much Mark for your valuable suggestions.
No doctor has never prescribed me for an ERCP.
For liver problem doctor has prescribed me BUDEZ CR 3mg(3 times a days) and
UDILIV 300Mg(4 times a day).
I will also ask my doctor about MELD score calculator.
Talking to Hindu close friend from Nepal , KTM. Where many find medicine too expensive
See you are having some meds plus yoga , all good and purifying . Many my friend speaks of use two things you may hear of , one is turmeric root chewing small amount in morning,second is drink pure sugar cane water .
Thank you very much for your valuable suggestions
@spchikudas what medicines did the Ayurveda doctor prescribe you?
These medicines along with yoga practice doctor prescribed me.IMG_20200713_095855|375x500
Thank you for your response
I been wanting to go to an Ayurveda doctor; I also have UC with PSC. I take no medicine
Good luck with everything
This report looks good. They show no indication of beading in the hepatic ducts. It’s not uncommon to have an enlarged spleen with PSC. Overall I’d say this is a very favorable report. Have you ever had an ERCP to look directly inside the bile ducts?