I think you need to just follow what your doctor says. If you trust him/her then go with it. It's great that we're able to empower ourselves with information and knowledge but at the end of the day I know I'm not a gastroenterologist and don't think I should be playing around with my medication or dosage. I can tolerate ursodiol very well, my symptoms are mild and I've had 2 specialists at 2 different hospitals come to the same diagnosis and prescribed the same treatment plan so I need to trust that everything that can be done is being done. Ursodiol may very well speed up the need for a transplant but if it helps make me feel great in the meantime, then that's something. Besides how would we ever know if when a transplant is needed it's because ursodiol brought it forward or it was going to be needed at that stage anyway? I say live life to the fullest and enjoy the times when you feel great instead of dreading transplant day.
Alix said:
Ursodiol is supposed to act as a bile thinner and if a sludgy, thick bile is contributing to obstruction from CBD stricture, would it not be helpful in that regard? Every flareup/attack leaves further scarring/sclerosing so I'm hoping the ursodiol will lessen the chances of obstructing (one can hope...). Starting it tonight, hopefully no side effects!
I have had liver disese for 10 years and have been given many diagnoses. The most recent is small duct PSC. I took Ursidol a few years ago (numerous pills, numerous times a day) and didnât find that it helped the severe pruritus. I also donât think it brought my LFTs down much either.
EAD3 I have had PSC and UC for almost 20 years now I have been on Urso for awhile now. Since my recent diagnosis of portal hypernsion along with several varices surrounding my liver and other organs it has done well for me overall. I have very little puritis at times. But I believe firmly in having a strict diet to counteract the effects of the disease have safeguarded me for years and years. I am reconsidering going back to a strict gluten free diet as well as a diet that supports PSC AND UC. I wish you luck.
I myself have had no ill side effects with Ursodiol. My GI specialist did reduce the dosage that my other doctor initially had me on. Let me know how it's going for you. Take care.
EAD3 said:
I have been on Urso for about two weeks and have noticed very few if any side effects. My doctor said that it is a bile acid that is normally made by the body and, in proper dosages, the side effects are minimal.
Alix said:
Have any of you had unpleasant side effects with Ursodiol? I'm just ready to start it this week and as with most meds, there's a kingsize list of every possible side effect imaginable. Amongst the more common ones are GI upset and hair loss. (I've already got the latter from Imuran!) Any particular probs noted?
I'm very curious. You mention a "strict diet to counteract the disease" (I think you mean PSC by "disease"). I'm curious what that consists of. I'm sure the gluten-free diet would help the UC. I have a friend who's had 2 transplants because of return of the PSC; he also has UC and has been gluten-free for a long time now. I want to improve my diet in any way that I can. Do you mind sharing the diet for PSC? Thanks so much, Dana
Alexander said:
Dear,
EAD3 I have had PSC and UC for almost 20 years now I have been on Urso for awhile now. Since my recent diagnosis of portal hypernsion along with several varices surrounding my liver and other organs it has done well for me overall. I have very little puritis at times. But I believe firmly in having a strict diet to counteract the effects of the disease have safeguarded me for years and years. I am reconsidering going back to a strict gluten free diet as well as a diet that supports PSC AND UC. I wish you luck.
Thanks, CactusGirl for that very interesting article! I think you need a MD degree to understand it all! If a larger better controlled study is performed, I would be interested in participating.
Regarding the healthy PSC diet issue, for me it is low fat (especially no cheese and other processed milk fats), low salt, mild fiber, and plenty of MCT's - medium chain triglycerides (coconut milk, coconut oil, palm kernal oil and nuts - especially macadamia nuts). Also, BRAT (Bananas, Rice, Apples & applesauce, and Toast) diet for the diarrhea. I do think the diet for PSC ahould be individualized depending on disease direction, symptoms, and hepatologists' preferences.
Thanks for all the diet tips. I know a lot already. But when someone says (like Alexander) that he has been on a "strict diet" for what I assume is the PSC, I really want to know the specifics.
EAD3, thanks for the tip on MCT's. I know there are certain guidelines you have to follow - can't heat the coconut oil above a certain degree, etc. How do you use the coconut oil? Could I put it cold in a smoothie?
I, too, have been on Ursodial for 25 years (!) after my initial diagnosis. Started with 2,000 mg daily, then doc reduced me to 1,000 after a few years and some initial studies showing bad effects in some patients. I have been relatively symptom free; LFTs are a bit elevated, but not so troubling. My new gastro doc wants me to quit Ursodial completely! It seems like the âsafety netâ Iâve had for 25 years will be ripped away. Iâve read some studies that indicate the problem with Ursodial is âhigh dosagesâ and now Iâve reduced mine to 500 mg daily, which seems like a âlow dosage.â Anyone else have similar experiences? Iâm now 67 and edging towards the date when I will âage outâ of liver transplant possibilities. Thanks for any info.
Mitch, welcome back.
I am glad you LFTâs are in the not troubling stage.
I was on Urso pre-tx but do not recall the dosage. My doc wants to keep me on Urso permanently post-tx. But I still can not tell whether it is beneficial as I canât tell any adverse effects. So I figure he knows best.
Jeff
Thanks, Jeff. I decided to reduce my Urso in half, to 500 mg a day. I told my doc that I couldnât âjump off the cliffâ to stop using Urso after 20 years of âsuccessâ, and that a lot of the research I read suggested that low doses were OK. She simply replied ânotedâ, but didnât push back. I have two upcoming gastro consults, and I will ask these docs what they think, and Iâm happy to post those results.