Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Lee, Thanks for pointing me to those studies, that is great information. I'm still debating about asking my doc, but I'm pretty sure I will soon. The studies seem to say that high dose (20-30) shows significant improvement, but also that a lower does (13-15) also showed improvement in liver chemistry. The doctor tells me I'm at the beginning of the disease, so what dose do I ask for? I'm sure he will have some sort of idea, but I wanted to get other people's thoughts. Also, what is the cost of URSO? I assume that it just depends on what your insurance provider's plan is, but what does is cost normally? It hink I heard $1.50/pill. Any help is greatly appreciated as always! Jed > Dear Jed, > When my son was first diagnosed we went for a second opinion at the > Mayo in Rochester and they were doing a high dose urso trial. > We did not join the trial but our son's physician agreed to put Bill > on 1,000 milligrams of Urso a day which she considered high dose. > After joining this group and reading up on the studies of Urso, we > realized that this was not high dose. So thanks to for > helping me get the papers on this, I took them to her and she > increased his Urso to 2,000mg a day. Dave put the studies supporting > high dose urso in the file section. > My son tolerates it well and together with the fish oil we hope it > will make a difference. > You might want to bring these studies to your doctor to support your > request. By the way, some people felt that you should work up to the > high dose which we did more accidentally than on purpose,with no > problems. > Good luck, > Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Lee, your insurance company must be paying quite a lot of the cost. 90 days supply at 8 pills/day is 720 pills for seventy dollars (less than 10 cents a pill). Up here in Canada I'm paying $1.36 CDN per pill and I believe drugs cost less up here. Ian (51) PSC 89 Jed, My son is on the 25-30 mg/kg/body weight dose. After seeing the papers his Dr. agreed that it was worth trying. His 3 month supply cost $70 after the insurance and he takes 8 [250] pills a day. He tried taking 4 of the 500 mg pills a day but didn't like the size and went back to more , smaller pills. I'm sure if you call your pharmacy with your insurance information, they could tell you ahead of time how much it would cost. Lee Lee, Thanks for pointing me to those studies, that is great information. I'm still debating about asking my doc, but I'm pretty sure I will soon. The studies seem to say that high dose (20-30) shows significant improvement, but also that a lower does (13-15) also showed improvement in liver chemistry. The doctor tells me I'm at the beginning of the disease, so what dose do I ask for? I'm sure he will have some sort of idea, but I wanted to get other people's thoughts. Also, what is the cost of URSO? I assume that it just depends on what your insurance provider's plan is, but what does is cost normally? It hink I heard $1.50/pill. Any help is greatly appreciated as always! -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Ian,Yes he has good insurance right now, but we pay $443 a month for it. It is a cobra program that will be ending and then we don't know what will happen.It is certainly a concern.LeeLee, your insurance company must be paying quite a lot of the cost. 90 days supply at 8 pills/day is 720 pills for seventy dollars (less than 10 cents a pill). Up here in Canada I'm paying $1.36 CDN per pill and I believe drugs cost less up here. Ian (51) PSC 89 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2007 Report Share Posted July 2, 2007 Jed, If you can get the drug cheaply, high dose " MAYBE " will protect you, but there are no guarantees. I take low dosage because (I believe) it keeps my LFT numbers down, they are not checking any liver cancer markers in the blood work, so I don't know if low dosages (or high dosages) are(would) protect me or how much. Ian I read the postings below on this and looked through some of the studies and could not come to a conclusion on what does is necessary to protect against colon cancer and such. If I take a low does (500 mg) similar to Ian's dose is that enough? Jed " The strongest reasons for taking urso are that it may protect against colon cancer and cholangiocarcinoma " > > _______________________> > Curr Treat Options Gastroenterol. 2007 Mar;10(2):111-9. > > Treatment of primary sclerosing cholangitis.> > Rost D, Kulaksiz H, Stiehl A> > Adolf Stiehl, MD Department of Medicine, University of Heidelberg, > Medizinische Universitätsklinik, Im Neuenheimer Feld 410, 69120 > Heidelberg, Germany. adolf_stiehl@... > > Aims of treatment for primary sclerosing cholangitis are as follows: > prevention of progression of hepatobiliary disease, reduction of > symptoms and consequences of cholestasis (pruritus, osteoporosis), > and prevention of complications (colorectal cancer, hepatobiliary > cancer). Ursodeoxycholic acid (UDCA) improves biliary secretion and > laboratory parameters of cholestasis, but its effects on liver > histology and survival are not clear. It reduces the incidence of > dysplasias and carcinomas of the colon in patients with colitis and > possibly has a beneficial effect on the incidence of bile duct > carcinomas. At present, UDCA represents the most promising > therapeutic option. Immunosuppressive treatment has not been proven > to be effective; it appears to be indicated in the overlap syndrome > with autoimmune hepatitis but may be harmful in bacterial > cholangitis. Bacterial cholangitis is common in patients with > dominant stenoses and requires antibiotic treatment. Endoscopic > treatment of dominant stenoses improves cholestasis and prolongs > survival in comparison to predicted survival. Pruritus represents a > problem in some patients, and cholestyramine represents the first-> line treatment. If ineffective, opioid antagonists, rifampin, or > ondansetron may be tried. For treatment of osteoporosis and > osteopenia, calcium and vitamin D supplementation are recommended, > and in selected cases, bisphosphonates may be indicated. In patients > with severe cholestasis and coagulation defects, parenteral > supplementation of vitamin K may be indicated. During treatment, all > patients should be regularly screened for colonic and bile duct > carcinomas. Patients with cirrhosis of the liver and its > complications are treated accordingly, and in end-stage disease, > liver transplantation is indicated. PMID: 17391626.> _______________________ > > Eur J Gastroenterol Hepatol. 2007 Jun;19(6):487-91. > > The incidence of cholangiocarcinoma in primary sclerosing cholangitis > after long-time treatment with ursodeoxycholic acid. > > Rudolph G, Kloeters-Plachky P, Rost D, Stiehl A.> Department of Medicine, University of Heidelberg, FRG.> > BACKGROUND/AIMS: Cholangiocarcinoma represents a serious complication > of primary sclerosing cholangitis. Ursodeoxycholic acid may possibly > influence the incidence of cholangiocarcinoma in man. The aim of this > study was to evaluate the incidence rate of cholangiocarcinoma in a > large group of primary sclerosing cholangitis patients after long-> time treatment with ursodeoxycholic acid. PATIENTS AND METHODS: From > May 1987 up to May 2005 a total of 150 patients with primary > sclerosing cholangitis but without evidence of cholangiocarcinoma at > entry were included in the study. All patients were treated with > ursodeoxycholic acid and controls were performed in at least yearly > intervals. RESULTS: The median treatment time of the 150 patients was > 6.4 years. Altogether five patients developed a cholangiocarcinoma > during treatment yielding a rate of 3.3%. The patients developed 0.58 > cholangiocarcinoma per 100 patient-years in years 0-2.5, 0.59 > cholangiocarcinoma in years 2.5-8.5, and no cholangiocarcinoma > thereafter up to 18 years after entry into the study. The Kaplan- > Meier estimate of cholangiocarcinoma incidence during ursodeoxycholic > acid treatment reached a plateau after 8.3 years. SUMMARY AND > CONCLUSION: The annual incidence rate of cholangiocarcinoma in > primary sclerosing cholangitis treated with ursodeoxycholic acid is > lower than expected and decreases with time of treatment. PMID: > 17489059.> _______________________> > My son is taking high-dose urso because is may protect against colon > cancer and cholangiocarcinoma, and it may improve liver histology and > survival, even though it has not been proven beyond any shadow of a > doubt to do so. We have only one chance at this. > > I am also dissappointed that there are no established therapies for > PSC, and this is why I'm working towards more funding for PSC > research.> > Best regards,> > Dave > -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
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