Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 HEY EVERYONE... I DON'T USSUALLY USE THIS BUT I REALLY NEED SOME INFORMATION OR SOME COMFORT ABOUT THIS SUBJECT. I AM 22/M/ARKANSAS AND I WAS DIAGNOSED WITH PSC AND UC BACK IN DECEMBER OF 04. I WENT TO A HEP DOC AND HE SAID I SHOULD TAKE ACTIGALL...I WENT BACK TO MY UC DOC (WHO HAS STUDIED ON PSC) AND HE SAID DON'T WORRY ABOUT IT RIGHT NOW. WHAT SHOULD I DO>>>? DOES IT WORK>? ARE THE SIDE EFFECTS BAD? ??? I AM SO CONFUSED? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Jon, There is no right or wrong answer to your question. The use of Ursodiol/Actigall is controversial and not all agree on its use. I believe most agree that it does not do you any real harm to take it but the studies are mixed on whether or not it has any real benefit. And for those without prescription coverage the drug is not cheap. Several of us in this group are currently enrolled in a long term study (myself included) to determine the affect this drug has on PSC. Previous studies have shown some promise but the jury is still out. Studies involving lower doses of the medication showed little impact on the course of the disease. I can tell you that most people that take Actigall tolerate it very well and have little or no side effects. There are a few exceptions where people have had symptoms such as nausea that prevented them from taking the medication but that is the rare exception. In regards to the differing advice from your two doctors I do not find that at all surprising. As I said there is no consensus on whether or not to prescribe this drug to patients. Some think that until a benefit is shown it is a waste of resources while others take a more agressive approach and think if it does not hurt, why not try. I for one would tend to listen more to my Hepatologist than my GI Doctor just because he is an expert in the liver and should have more current and broad knowledge. But ultimately you must decide what you think is best for you. I have included below a overview of the drug that I borrowed from 's website (Hope you don't mind ) that explains all the facts about this medication quite well. Hope that answers your questions. in Seattle Why is this medication prescribed? Ursodiol is used to dissolve gallstones in patients who do not want surgery or cannot have surgery to remove gallstones. Ursodiol is also used to prevent the formation of gallstones in overweight patients who are losing weight very quickly. Ursodiol is a bile acid, a substance naturally produced by the body that is stored in the gallbladder. It works by decreasing the production of cholesterol and by dissolving the cholesterol in bile so that it cannot form stones. This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information. How should this medicine be used? Ursodiol comes as a capsule to take by mouth. It is usually taken two or three times a day to treat gallstones and two times a day to prevent gallstones in patients who are losing weight quickly. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take ursodiol exactly as directed. Do not take more or less of it or take it more often than prescribed by your doctor. This drug must be taken for months to have an effect. You may need to take ursodiol for up to 2 years. Your gallstones may not completely dissolve, and even if your gallstones do dissolve you may have gallstones again within 5 years after successful treatment with ursodiol. Continue to take ursodiol even if you feel well. Do not stop taking ursodiol without talking to your doctor. What special precautions should I follow? Before taking ursodiol, tell your doctor and pharmacist if you are allergic to ursodiol, bile acids, or any other drugs. tell your doctor and pharmacist what prescription and nonprescription medications you are taking, especially antacids that contain aluminum (Amphojel, Gaviscon, Maalox, Mylanta, others), cholestyramine (LoCHOLEST, Prevalite, Questran), clofibrate (Atromid-S), colestipol (Colestid), medications that lower lipid or cholesterol levels, medications that contain estrogen (including birth control pills), and vitamins and herbal products. tell your doctor if you have or have ever had disease of the liver, gallbladder, pancreas, or bile duct. tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while taking ursodiol, call your doctor. What should I do if I forget a dose? Take the missed dose as soon as you remember it. However, if it is almost time for the next dose, skip the missed dose and continue your regular dosing schedule. Do not take a double dose to make up for a missed one. What side effects can this medication cause? Side effects from ursodiol can occur. Tell your doctor if any of these symptoms are severe or do not go away: diarrhea constipation upset stomach indigestion dizziness vomiting cough sore throat runny nose back pain muscle and joint pain hair loss If you experience any of the following symptoms, call your doctor immediately: frequent urination or pain when you urinate cough with fever What storage conditions are needed for this medicine? Keep this medication in the container it came in, tightly closed, and out of reach of children. Store it at room temperature and away from excess heat and moisture (not in the bathroom). Throw away any medication that is outdated or no longer needed. Talk to your pharmacist about the proper disposal of your medication. In case of emergency/overdose In case of overdose, call your local poison control center at 1-800- 222-1222. If the victim has collapsed or is not breathing, call local emergency services at 911. What other information should I know? Keep all appointments with your doctor and the laboratory. Your doctor will order blood tests to check your liver function every few months while you take ursodiol. You will also have a type of x-ray called ultrasound imaging to see how your gallstones are responding to ursodiol. Do not let anyone else take your medication. Ask your pharmacist any questions you have about refilling your prescription. Last Revised - 01/01/2003 > HEY EVERYONE... > I DON'T USSUALLY USE THIS BUT I REALLY NEED SOME INFORMATION OR SOME > COMFORT ABOUT THIS SUBJECT. I AM 22/M/ARKANSAS AND I WAS DIAGNOSED > WITH PSC AND UC BACK IN DECEMBER OF 04. I WENT TO A HEP DOC AND HE > SAID I SHOULD TAKE ACTIGALL...I WENT BACK TO MY UC DOC (WHO HAS > STUDIED ON PSC) AND HE SAID DON'T WORRY ABOUT IT RIGHT NOW. WHAT > SHOULD I DO>>>? DOES IT WORK>? ARE THE SIDE EFFECTS BAD? ??? > I AM SO CONFUSED? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Jon, I started taking Actigall right away after I was DX with PSC. I had a bout of diarrhea at first but that soon went away. My liver function test were pretty close to normal while I have been on it. I decided to do a test about a week before I did had a blood test done. I stopped the taking the Actigall. Well, guess what, lots of my numbers in my liver function test went very high. I got the answer that I wanted, it does help. I have had UC and PSC now for over 8 years and seem to be coping pretty well with it. I still don't have a lot of symptoms with the PSC. I used to be tired quite a bit, but starting taking some supplements and now I have plenty of energy. Here is another web site to take a look at. Good luck. Larry, 54, Baltimore, UC95, PSC96 Primary Sclerosing Cholangitis : PSC Support http://www..com/faq.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 My boyfriend took Actigall for a while but he said it made him so out of it that he couldn't think or function normally. Of course his dr said there are no side effects. He stopped taking it anyway. I took it when I had gall stones and didn't have any side effects that I remember except for a metallic taste in my mouth. I think like most drugs, it effects people differently. From what I've read here, it does sound like you should probably be taking it though, as long as you can tolerate it. Bobbi Quote Link to comment Share on other sites More sharing options...
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