My Gastro wants me to take this for the PSC, said it’s a trial medicine & controversial, also that it will lower my liver enzyme readings.
What has been your experience with it & did it lower your liver enzyme readings?
Also I been having fever once a week, for the last 3 weeks. The highest was 102. UR quadrant, very uncomfortable on & off and no yellow eyes.
The gastro said to go to ER when I have 103 fever.
Is this normally what your Dr tells you? When do U go to ER? Do you take fever medication for fever? The first 2 times I did but the third I didn’t. I was expecting my fever to go higher and it didn’t.
I’m barely going to get a referral for a transplant.
Thanks
Hi there,
Im taking Urso now, it doesnt seem to affect me in any way actually. It made no difference so far, but Ive only been taking it for a few months. No side effects for me either. I have not heard that its controversial and Im not taking it as part of any trial, its been around for a while I think. Many of us take it.
If you are having URQ pain and fevers above 102, or even if you are concerned, you should definately go in to ER and ask for the hepatologist on-call. If you are feeling like that, you are probably having a cholangitis attack / infection and they can give you IV antibiotics to clear it up. Don’t hesitate to go in. I have had this for almost 20 years and I would go in right away if I were experiencing what you are feeling.
I have taken Ursodiol since 1995. My gastro dr. said it keeps things from sticking together inside. I can’t tell that it has helped with pain or anything. I take it feeling that at least I don’t have things clumping together inside.
I also take Urso twice daily, and have for a couple of years now. From what I have heard, it is supposed to thin the bile acids so that the acids can more easily pass around the bile duct strictures. Taking it has normalized my liver enzymes, and seems to have helped with the itching and nausea I was having.
I think that the reason your doctor may think it’s experimental is that it isn’t officially approved for treating PSC, although it is approved for treating PBC.
Also, it hasn’t been proven to significantly prolong time to transplant, so I think of it more in terms of the fact that it seems to give me a better quality of life, for now.
There was a study a while back with high doses of urso that was stopped because of adverse responses in participants, but it’s generally considered safe at lower levels. I take 600 mg a day, which is considered a low dose. I think the standard dose is a little higher than that.
Steve,
You hit the nail on the head with your observations about Urso. In my opinion it serves as a quality of life benefit for the PSC patient. Although it doesn’t slow down progression it does thin the bile to give symptom relief. The more the disease progresses you will be glad you take it. I was on 1200 mg a day until transplant and it did provide a benefit. It’s not a magic pill but it does provide some relief.
I take 3 daily now. I started taking it when I had my liver resected due to cancer. It drove my enzymes down for around 2 months then my enzymes have been staying the same ever since.
I have been taking Ursodiol for about 9 months now! 600 mg in the morning and 300 mg in the evening. My doctor wanted to try it when my alk phos came back at 842, I have been asymptomatic from PSC for almost 5 years. 3 months into treatment my alk phos came down to 419. my ALT decreased from 150 to 72, and AST decreased from 114 to 55! While all these numbers sound reassuring, there is no way to know that this medication is actually slowing down the disease process and my doctor said that “only time will tell”
Coffeequeen,
I’m glad to hear that Urso has helped you get your alk phos numbers down. Urso helps thin the bile making this possible. This is more about quality of life more than disease treatment. It doesn’t slow the actual progression of the disease though. I took it for many years and it helped a lot in the early stages. I hope you have continued success with it.
My son takes Urso 2 times / day (along with Vancomycin 3 times / day). His GI doc said this was a very safe drug to take. No real side effects at the lower dose they prescribe these days. Liver enzymes have drastically improved over the past 6.5 weeks he has been on both medications. My guess is that it’s the vancomycin that’s doing the trick, but urso seems to be the way to go. It’s what is recommended by his GI doc, who I trust in my son’s care. In fact, there is team of GI docs both from Kaiser and Doernbecher’s Children’s Hospital, a place where there are lot of smarty-pants physicians, involved in reviewing his case and making recommendations. I feel he is in good hands.