MY PSC story

Well I was just diagnosed with PSC with compensated cirrhosis, not sure yet exactly what all that is meaning, but that's what prompted me to this site.

I have been having a bloated stomach feeling after eating for the last year and increasing what seemed to be IBS, I stay sore all over in my joints and in general just haven't felt worth a damn for quite sometime now.

My liver enzymes had been freakishly elevated for about 4 years, but finally started coming down once they started treating me for type 2 diabetes, they still remained out of range on the high side , but have come down significantly and was attributed to fatty liver. I am way overweight from office chair syndrome and have been working to get it down, but it has been a slow process.

Like I said earlier, the cramping and bloating and IBS started about a year ago, so about 5 months ago told my doctor how bad I had been feeling and some of the other symptoms, she sent me to a gastric specialist and after cat-scans and more blood test and finally a liver biopsy she informed me of my news of PSC and compensated liver. She said they was going to start me on ursodiol 7 300 mg pills a day and that should help stop the liver damage. I have since read a few things on the internet and finding the situation is much more complex than what was described. So I hope to find some answers on here.

Does the ursodiol work or is it really helpful in anyway and is it dangerous in such a high dose? Thanks in advance.

Check out this link. It is a podcast from the 2014 PSC conference on this very subject. Listen to 10:58 to 15:18.

The standard dose of ursodiol is 15 mg/kilo/day. I weigh 95 kilos and so my dose should be 1425 mg/day. The pills come in 250 mg, and I was prescribed 1000 mg/day, or 4 pills. Earlier, I had taken 6 pills per day for several years, but my gastroenterologist changed that to 4 because of studies that suggested high doses were not good. (I may have weighed a bit less too.)

I don't know what you weigh, but if you do the math, you will find out whether to be concerned about the dosage being too high. High dose is around 28-30 mg/kilo/day.

Urso has been proven to lower LFTs, including ALP. This is significant because research has shown that PSC patients with lower ALP tend to last a lot longer before reaching an endpoint (transplant, cancer, death). The problem is that no clinical trial (and there have been many) has been able to show that PSC patients on Urso last any longer before reaching an endpoint when compared to controls. Doctors theorize that the Urso is masking the numbers rather than actually improving things. Despite these tests, doctors continued to prescribe Urso because many patients report that it improves symptoms, there was no other alternative treatment, and there was no apparent down side to using the drug.

This changed with the release of this study: There is now a general consensus that high-dose Urso is a bad idea and there is a pretty sharp split between doctors as to whether Urso in more moderate doses is still appropriate.

Thanks Laura and jtb, I appreciate your response, I had been reading a lot of people use milk thistle along with it and it helps improve numbers and symptoms. I ordered some Jarrow Milk thistle to take along with the Urso. Has many here had good results with that combo? I have to find something to help with my bloatness and constant nausea and IBS. I feel like crap all the time now days.

I have been taking probiotics (high quality prescription strength vsl#3) along with blueberries and ulcerative colitis has been under control ever since. There are lots of studies and clinical trials about the effectiveness of vsl#3 and also studies about the benefits of blueberries, especially when taken together with probiotics.

Some clinical trials have shown benefits of vsl#3 for liver diseases, though at least one trial showed that probiotics did not appear to help for psc. More research needed, but at least no harm for psc.

Thanks Ted, I had been taking some drugstore probiotics from Bayer they seemed to help some, but not much, I might trie the ones you are talking about and blueberries.

I have taken some form of ursoliol for since about 1994. Have been as high as 4 a day, and I don't believe it ever bothered anything. I'm still on it, but down to 2 a day. Have you had a colonoscopy-do you have IBS or is it UC-UC is a related disease to the PSC-I started with UC in 1987 and found I had PSC in 1994. Everyone's situation can be different. I hope the ursodiol works well for you.

Marietta07 said:

I have taken some form of ursoliol for since about 1994. Have been as high as 4 a day, and I don't believe it ever bothered anything. I'm still on it, but down to 2 a day. Have you had a colonoscopy-do you have IBS or is it UC-UC is a related disease to the PSC-I started with UC in 1987 and found I had PSC in 1994. Everyone's situation can be different. I hope the ursodiol works well for you.


Yes, have had the colonoscopy they haven't mentioned IBS, there was lots of diverticular disease showed up on cat-scan. I have all the lovely benefits (symptoms)of IBS, but the my doctor has never confirmed it. I did have 3 polyps removed during the colonoscopy. In fact at first they almost dismissed everything as a combination of a bad diet, diverticular and fatty liver which I had been diagnosed with a few years earlier, thats how they explained my high enzyme readings. Anyways they decided go ahead with a liver biopsy this time and then I get this PSC news this week. I'm thinking about going and getting a second opinion from another doctor.

Well it looks like I won't be taking ursodiol, the first day I started , I noticed a increase in nausea, and diarrhea, but figured it was going to be that way for a day or two. The next day these conditions doubled by in intensity, but I still figured it might be just getting used to the medicine.

The morning on the third day took my 4 pills and went to work. By the time I was there in my office chair the nausea went ballisticly bad, I was running to the bathroom with horrible diarrhea and a achey pain begin in my lower right side, I was so sore and stiff and pain in my back I hurt all over, I felt like I had a major flu. I felt like I was going to puke any second, but the diarrhea was so bad I didn't have time to. I tried to contact my doctor 3 times that day to get her to call some kind of nausea medicine and she never got back with me. I decided right then there was no way I was going to continue urso.

I left work early went home dug through my medicine cabinet and found some of my wifes phengan to calm down my raging nausea I skipped my 3 tab evening dose of urso and crawled in my bed at 5pm in the afternoon and was out for 12 hours. Actually got up feeling fairly well.

Finally got the doctor to take my call the next day, she said not to take it anymore , but she didn't know what else to give me, She did prescribe me some nausea medicine, So I guess I'm going to try the Milk Thistle thing now. Anybody having luck with that.

Well things are changed again. The new doctor I'm going to don't think its PSC so they are ran more MRI on my liver nd thinks the extent of my cirrhosis is being caused by fatty liver, however I'm getting higher than normal Amonia readings, so he had put me on xifaxan for the rest of my life and wants me to get associated with a transplant team. That damn medicine cost $1700 a month :( to take, and my insurance said hell no. They finally decided to pick it up thank God. Has anyone here ever taken xifaxan? Did it help anything? I still feel like I don't know what the hell is wrong me. Feel like a mushroom they keep me in the dark and feed me shit. Anyone been on this train ride of not knowing what the hell is going on?

Thats just it, the second doctor said he didn't think it was PSC thats why he ordered mRI and got my biopsy report and looked at it. He said if he couldn't determine if there was PSC he would order a dye thing through my bile ducts, which wasn't done by the first doctor. So tha'ts what I'm saying im left confused.

I know this doctor is supposed to be one of the best, he diagnosed my sister with Caroli disease after she had been to numerous doctors.

One thing I for got to mention since I last posted last month. I had quit taking the ursodiol because it made me deathly sick, and started on Jarrow Milk Thistle three 150mg capsules a day. Most of my nausea and diarrhea has subsided, so I can vouch for that it does seem to help for me. Thought I would throw that in for those wondering about trying Milk Thistle.

Hi Realityman
How are you doing now? Hope your condition is starting to settle and that you are feeling better. Are you any clearer on your diagnosis? Hope you have got answers to the questions…I can imagine how frustrating it must be not knowing for sure what is going on. Thinking of you…