Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 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,LeeThere are any number of times I've startled my hep with what I've learned here. We are actually a layman's research organization, and are typically able to disseminate information quickly. I assure you that by far the majority of hepatologists prescribe Urso for PSC patients, and virtually all of the major PSC researchers (Lindor, Chapman, etc.).500 mg/day is quite low, for an adult. High dose Urso is 20-30 mg/kg of body weight. I weigh about 185 lbs and take 2100 mg/day (25 mg/kg). Urso is well tolerated in most patients (there are some exceptions). It's only downside is cost, which of course may be an issue. I've not heard of an insurance company that does not cover high dose Urso regimens.You may have the best doctor in the world, but YOU ARE STILL THE CUSTOMER. It's your life, after all - not your doctor's. I first learned of high dose Urso on this site and mentioned to my hep at my next appointment. He basically said "Sure - we can do that. Studies are not conclusive, but it won't hurt". This was 6 years ago, when high dose Urso was first being proposed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 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.LeeLee,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! Quote Link to comment Share on other sites More sharing options...
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