Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 My Nephrologist is Dr. Tumlin at Emory University. He recently restarted me on the fish oil after having me stop taking it during the 6 months of cytoxan treatments. He told me to take only four tablets a day and said that the latest studies have shown the same results at the lower dose. He said he is currently involved in a study that is working on this premise as well. I took his word for it since four tablets are much easier to get all in a day that 12. Thanks K. Fish oil > > > > Hi, I am the one who posted the question about smaller fish oil caps. > > I have seen the fisol on the web. I did not know if it has the right > > amounts of EPA and DHA. Or does it really matter? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Just want to mention that it still makes a difference how much actual EPA and DHA is in the capsules. There is quite a variety on the market now. 4 of one brand might or might not be equivalent to 4 of another. As pointed out by other members in past messages on this subject, some of the labeling can be a little confusing (if not downright deceptive). Some list EPA/DHA content per capsule, some list it per recommended dose, as stated on the bottle, which may represent 2 capsules in reality, instead of one. In that case, one brand may initially appear to be more concentrated initially, but isn't. Some fish oil brands don't list the EPA/DHA content at all. I would avoid those entirely, since there's no way of knowing how much you are taking. Pierre Re: Fish oil > My Nephrologist is Dr. Tumlin at Emory University. He recently restarted me > on the fish oil after having me stop taking it during the 6 months of > cytoxan treatments. He told me to take only four tablets a day and said > that the latest studies have shown the same results at the lower dose. He > said he is currently involved in a study that is working on this premise as > well. I took his word for it since four tablets are much easier to get all > in a day that 12. > > Thanks > K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 The new page on Fish Oil is now on the website. You can access it in various ways. Go to www.igan.ca , and then to the IgAN Notebook, then to the page on Treatment of IgAN. In the paragraph on fish oil, there is a link to a completely separate page on fish oil. Just click on it. From this email, you should be able to go to it directly by clicking on this: http://www.igan.ca/id60.htm Pierre P.S. There could still be a typo or two on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 Hi karen, I totaly agree with you. I would be willing too Heidi -- Re: Re: Fish Oil , has tried to schedule some chats a few times, but nobody showed up. So, the chat room hasn't been used much. It's a great feature of Yahoo Groups though. Pierre Re: Fish Oil > Just a quick question about the Vitamin E, is each pill 800mg? > Thank you Pierre for the web site reference, I have visited that site > and find it pretty useful. Does this group ever meet for a regular > chat session? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 I believe 400IU is the recommended intake of Vit E. Curtis in Ontario, Canada. Re: Fish Oil Just a quick question about the Vitamin E, is each pill 800mg? Thank you Pierre for the web site reference, I have visited that site and find it pretty useful. Does this group ever meet for a regular chat session? > > I just joined this group today and I was wondering what ideas you > guys > > might have on taking fish oils. My son who is 6 has just been > > diagnosed with IgA Nephropathy and his doctor has told us to have > him > > take fish oil. If anyone out there has any kids that are on fish > oil, > > how much are you giving them. His doctor never specified how much > to > > give him and I'm a bit nervous about giving him the adult dosage. > > > > Thanks! =o) > > > > PS Do you know any good websites with good information? > www.igan.org > > is out of order right now... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 , has tried to schedule some chats a few times, but nobody showed up. So, the chat room hasn't been used much. It's a great feature of Yahoo Groups though. Pierre Re: Fish Oil > Just a quick question about the Vitamin E, is each pill 800mg? > Thank you Pierre for the web site reference, I have visited that site > and find it pretty useful. Does this group ever meet for a regular > chat session? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Yeah sob sob, no-one wanted to chat to me. Cmon guys if you want to meet regularly let's set an evening aside, it need only be for a couple of hours on a set day, I willing if you are. Re: Re: Fish Oil , has tried to schedule some chats a few times, but nobody showed up. So, the chat room hasn't been used much. It's a great feature of Yahoo Groups though. Pierre Re: Fish Oil > Just a quick question about the Vitamin E, is each pill 800mg? > Thank you Pierre for the web site reference, I have visited that site > and find it pretty useful. Does this group ever meet for a regular > chat session? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 , No crying on line... :)I will chat, name the date, time and I'll check my calendar. Connie, USA Re: Re: Fish Oil , has tried to schedule some chats a few times, but nobody showed up. So, the chat room hasn't been used much. It's a great feature of Yahoo Groups though. Pierre Re: Fish Oil > Just a quick question about the Vitamin E, is each pill 800mg? > Thank you Pierre for the web site reference, I have visited that site > and find it pretty useful. Does this group ever meet for a regular > chat session? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Rita, I have been taking fish oil on and off for about 6 years. I started out on 12mg a day and now take 4mg. My Nephrologist told me to cut back to 4 pills a day from the 12 I was taking. The on and off came from my own lack of committement. I got lazy and quit from time to time. I am now much more dedicated to it. It would be hard to say what my condition would be without them so I can't really tell you if they help or not. The studies are consistent that they do help so I am in for the long haul. I have also taken immunesupressants in the form of prednisone and cytoxan. It has been extremely effective in getting rid of the crescents that were forming in the kidneys. All of them are gone as of now, and no additional scar tissue was formed from them. It was all good for me. Take care, K. fish oil > > Have fish oil any positive effect on IGAN? > > As we know the positive effect of fish oil on IGAN > have not definetely proved. The trials that have been > done involve only a limited number of patients. But > many of us in this group are taking fish oil, and we > are not a limited number. So we are in better > condition to establish whether fish oil has any > positive effect on IGAN than any other research group. > In my case I have only taken fish oil for the last two > months (4-5 gr a day), so probably I am not in a good > position to decide if it has contributed positively or > not. So far I would say that yes, but it is difficult > to establish if my condition is attributed to the fish > oil intake or to the strict control of BP. But I am > sure that many others in the group have already been > on fish oil for longer time. So we can make our own > statistics, to see if any difference in terms of > stabilisation of the desease between those having fish > oil and those not. Also is it possible for us to > decide on the right amount of fish oil that should be > taken? > I think that we can reach some important conclusions > and it would be interesting for a better understanding > of the desease. We can let some research group on IGAN > know about our findings through our experiences, and > this will be good for future research on a relatively > new and rare desease. > > Also some common questions here are about time to > develop the desease from one particular stage. > Although > the desease is highly variable, medicine always > operates with statistics, so we are a big enough group > to have own statistics, so that if a new member is > coming to the group, he/she can find this information. > > > One of the neph that I have consulted is a well known > researcher on IGAN, and I am sure he will appreciate > any conclusive information from our group. > > Also as I see it, many of you have been using > inmunosuppresants for IGAN. So for which cases it is > good to use inmunosuppresants despite the serious side > effects? In the rapid progressing cases? I have seen > that many of you have got remission in same extent and > even an improvement of renal function. It would be > good > to have statistics for this, so that the patient > together with his/her neph can make right decisions. > > Looking forward to your contribution. > > Rita > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 My experience with this group and others is that while there may be 400+ members, not enough are active at any given time to undertake what would in fact be a major study, which, unfortunately, is well beyond the scope of a peer support group. Pierre fish oil > > Have fish oil any positive effect on IGAN? > > As we know the positive effect of fish oil on IGAN > have not definetely proved. The trials that have been > done involve only a limited number of patients. But > many of us in this group are taking fish oil, and we > are not a limited number. So we are in better > condition to establish whether fish oil has any > positive effect on IGAN than any other research group. > In my case I have only taken fish oil for the last two > months (4-5 gr a day), so probably I am not in a good > position to decide if it has contributed positively or > not. So far I would say that yes, but it is difficult > to establish if my condition is attributed to the fish > oil intake or to the strict control of BP. But I am > sure that many others in the group have already been > on fish oil for longer time. So we can make our own > statistics, to see if any difference in terms of > stabilisation of the desease between those having fish > oil and those not. Also is it possible for us to > decide on the right amount of fish oil that should be > taken? > I think that we can reach some important conclusions > and it would be interesting for a better understanding > of the desease. We can let some research group on IGAN > know about our findings through our experiences, and > this will be good for future research on a relatively > new and rare desease. > > Also some common questions here are about time to > develop the desease from one particular stage. > Although > the desease is highly variable, medicine always > operates with statistics, so we are a big enough group > to have own statistics, so that if a new member is > coming to the group, he/she can find this information. > > > One of the neph that I have consulted is a well known > researcher on IGAN, and I am sure he will appreciate > any conclusive information from our group. > > Also as I see it, many of you have been using > inmunosuppresants for IGAN. So for which cases it is > good to use inmunosuppresants despite the serious side > effects? In the rapid progressing cases? I have seen > that many of you have got remission in same extent and > even an improvement of renal function. It would be > good > to have statistics for this, so that the patient > together with his/her neph can make right decisions. > > Looking forward to your contribution. > > Rita > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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