Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Margie, 1. 120 pounds is equivalent to 54.5 kg. 20 mg Actigall/Urso per kg body weight works out to 1090 mg, which is significantly more than what you have been taking, and even more significantly more than what your insurance company is now going to reimburse you for. If it was me, I would demand the doctor and/or the insurance company prescribe and pay for 1200mg per day (four 300mg capsules), which is slightly higher than 1090, but well within the 20-30 mg/kg dose that Dr. Chapman has found slowed or stopped progression in a sizable proportion (I believe about 40%, if memory serves) of his study patients. 2. You asked for comments about your blood test results. The most obvious, and probably the most important, observation is that your July Alkaline Phosphatase level was HALF the level of the February reading. What, exactly, did you do differently in those five months? Whatever it was, keep it up and try to halve the July number by December. Best, Ezra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 Let's see. 58 kg times 20mg is equivalent to 1160mg per day, compared to the 750 your wife's doctor is prescribing. And, as I keep repeating to everyone, 20mg is the LOW END of the 20-30mg range. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 Ezra, thanks for your comments. You asked what I had done differently that could have contributed to the halving of my ALP level between February and July. The only thing I did was start taking Actigall (300 mg 3 times daily). Now, that I asked for a prescription for URSO instead of Actigall (because my insurance company wants to save money), my doctor (GI with special interest in liver disease, and the one who did my ERCP and diagnosed me with PSC) prescribed only 810 mg of URSO daily. I agree with you and everyone else, but he won't listen when I tell him I think I should be on a higher dosage of Actigall/Urso. I should fax him info about Dr. Chapman's study. Can you suggest what I should send him? If you have actual text that you don't want to (re)post here because of its length, will you email it directly to me? Thanks for your help. Margie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2000 Report Share Posted July 24, 2000 On Mon, 24 Jul 2000 04:09:51 -0000, Margaret son wrote: >email it I emailed her a copy of: http://www..demon.co.uk/oxford/oxford03.html DenverD, husband of Mette (44), UC '73, dx PSC 6/2000, Alive in Denmark www.Texan.dk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 DenverD Don't you mean grape seed extract? Grapeseed oil is not terribly beneficial, according to my sources. Ezra PS: Thanks for looking into the Swedish study. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Margie, I'm sorry I haven't responded to your request for information supporting the higher Urso dose. I will search the egroups archive later today and find the email we received last year from a representative of the British PSC group detailing Dr. Chapman's preliminary data. Ezra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 >He's going to gradually come off the steroids. Doctor increased his >Asecol, and approved his use of milkthistle & grapeseed oil, too. Any >antioxidant can't really hurt. I have also hounded about increasing his >water intake and absolutely no Coka Cola! what is the deal with Coke? (and, one of my posts to this group must have been lost somewhere..) I meant to ask about things like milkthistle & grapeseed oil.. or rather, diet in general.. Mette has had her gall bladder out (and diagnosed with PSC), and other than a not-so-important or " off the cuff " kind of remark about cutting back the amount of fat, nothing at all has been said about diet, etc etc.. I wonder if there has been any clinical trials on any of the *claims* made in any of the books for sale about " tired livers " and such.. I'm inclined to ignore all of that until I *learn* otherwise.. DenverD, husband of Mette (44), UC '73, dx PSC 6/2000 alive in Denmark <www.Texan.dk> Life... Sexually transmitted and always terminal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 I'd like to hear more about the role diet plays in the scheme of prolonging the course of the disease. Also, if anybody knows how to lower Alkaline PHosphotase levels, I'd like to hear about that too. Mine is over 600 and I hear others getting alarmed when it is in the high 100's. Re: Margie and Actigall/ALP >He's going to gradually come off the steroids. Doctor increased his >Asecol, and approved his use of milkthistle & grapeseed oil, too. Any >antioxidant can't really hurt. I have also hounded about increasing his >water intake and absolutely no Coka Cola! what is the deal with Coke? (and, one of my posts to this group must have been lost somewhere..) I meant to ask about things like milkthistle & grapeseed oil.. or rather, diet in general.. Mette has had her gall bladder out (and diagnosed with PSC), and other than a not-so-important or " off the cuff " kind of remark about cutting back the amount of fat, nothing at all has been said about diet, etc etc.. I wonder if there has been any clinical trials on any of the *claims* made in any of the books for sale about " tired livers " and such.. I'm inclined to ignore all of that until I *learn* otherwise.. DenverD, husband of Mette (44), UC '73, dx PSC 6/2000 alive in Denmark <www.Texan.dk> Life... Sexually transmitted and always terminal. ------------------------------------------------------------------------ @Backup- Protect and Access your data any time, any where on the net. Try @Backup FREE and receive 300 points from mypoints.com Install now: http://click./1/6346/11/_/24674/_/964550156/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 >Don't you mean grape seed extract? Grapeseed oil is not terribly beneficial, >according to my sources. Ezra PS: Thanks for looking into the Swedish >study. I was just quoting the other mail, which said " grapeseed oil " .. (which, by the way, just happens to be what Mette uses to make her mayonnaise--which taste better than Helmans [which I always thought was the best on the shelf in the USA]).. my question is: is it true that most of the (hyped) liver diets are " not terribly beneficial " ? or, have clinical trials proven for us what is, or is not, worth effort.. remember, I'm REAL new here..my wife was just diagnosed last month.. I have no intention of trying every possible do-eat-this and don't-eat-this book, and web site available.. I KNOW there are lots and lots of opinions on what is (or is not) " good " food in general, and in specific for liver ailments.. I'm just asking what has been proven helpful vs. what is an opinion (or, it worked for me--you might wanna try it..) DenverD, husband of Mette (44), UC '73, dx PSC 6/2000 alive in Denmark <www.Texan.dk> Life... Sexually transmitted and always terminal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Ezra, thanks for looking for the info supporting the higher dosage of Urso. I probably won't receive it before getting my new prescription for Urso filled tomorrow, but it should come in handy for the future. Taking only 250 mg 3 times daily seems hardly worth bothering with. I originally thought the doctor prescribed 270 mg Urso, but I phoned the pharmacy where I dropped off the prescription and the 270 in the body of the prescription was the quantity 270 every 90 days or 90 every 30 days. Also, it is for name brand, not generic, Urso. Margie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 >avoid caffeine thanks.. we don't drink much coke either.. but, EuroStrong coffee is a twice daily ritual.. hmmmmmm, she can give it up--not me. DenverD, husband of Mette (44), UC '73, dx PSC 6/2000 alive in Denmark <www.Texan.dk> Life... Sexually transmitted and always terminal. Quote Link to comment Share on other sites More sharing options...
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