Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I was just wondering, for the people who took the LDN for the first 20 months, how are they going to react when they no longer get it. I sure noticed when I missed a day. How are they going to feel when they have to go 20 months on a placebo. They will know. Just wondering, FlashyKathy74 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2010 Report Share Posted May 14, 2010 Hi Trudy I would say - go for it. This could be what youve been waiting for. In a trial you will be getting the BEST of care, as they have more 'incentive' than just a doctor. You will also be a hero, helping others with HCV. Heres some info for you to look at. Click these links and read. Fluvastatin http://health./cholesterol-medications/fluvastatin/healthwise--d03183a1.html#d03183a1-sideeffects search results - Fluvastatin http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=Fluvastatin & type= search results - hepatitis c + Fluvastatin http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=hepatitis%20c%20%2b%20Fluvastatin & type= love don in ks From: Trudy <trudykinsey@...>Subject: [ ] Drug trial"Hcv" < >Date: Thursday, May 13, 2010, 6:06 PM There is a trial recruiting in my area...Peg. Inteferon & Ribavirin with Fluvastatin in treatment-naive type 2 & 3 . So, Don, what do you know about this? And , Gloria, would you reccomend taking part in trial ? I have insurance, but this would negate all those co- pays & shares that insurance won't cover. Just wondering... And wanting y'alls opinions....http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"http://allrecipes.com/cook/TrudyK/profile.aspx ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2010 Report Share Posted May 14, 2010 Trudy, I have 3 important words for you... GO FOR IT! It sounds like a win/win situation. You have nothing to lose and it's not going to cost you anything which is great in and of itself! This just might be the treatment that works, not only for you but for others that are still waiting. Being part of a clinical trial is an honor. DO IT.TeriFrom: Trudy <trudykinsey@...>Hcv < >Sent: Thu, May 13, 2010 6:06:34 PMSubject: [ ] Drug trial There is a trial recruiting in my area...Peg. Inteferon & Ribavirin with Fluvastatin in treatment-naive type 2 & 3 . So, Don, what do you know about this? And , Gloria, would you reccomend taking part in trial ? I have insurance, but this would negate all those co- pays & shares that insurance won't cover. Just wondering... And wanting y'alls opinions.... http://facebook. com/people/ andTrudy- Kinsey/134046087 7 " "A well- behaved woman never made history" http://allrecipes. com/cook/ TrudyK/profile. aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2010 Report Share Posted May 14, 2010 Whoa! Hold on a minute All. Do not think that because the drug companies are providing care that this means you will get good advice and doctors. The drug companies are in it for themselves. Their goal is to collect data. That does not mean they are in it for your best interest. At my local group Tuesday night we discussed this topic about trials. The gist was that on a recent trial (not hepC) 10 people died during the trial . Did they stop it. No. they continued testing at a lower dose. I will find out more about the exact trial for the group. They are not required to inform you of what their test and observations reveal, and you may get on the placebo side. Lets say they find you are anemic.Maybe they want to see how this runs it's course and don't inform you of it. I am not saying do not go for a trial. I am saying that thinking their doctors will give good doctoring is false. Why would they. They want to see how the drug performs on you and if this is negative, they want to know that too. If you go for it and get on one make sure to maintain you're own doctors and rely on their treatment, not the drug companies. Randy O Website-- SuncoastHepCFriends.OrgForum -- Suncoast HepC Friends ForumFrom: Teri Gottlieb <theresagottlieb@...> Sent: Thu, May 13, 2010 7:43:42 PMSubject: Re: [ ] Drug trial Trudy, I have 3 important words for you... GO FOR IT! It sounds like a win/win situation. You have nothing to lose and it's not going to cost you anything which is great in and of itself! This just might be the treatment that works, not only for you but for others that are still waiting. Being part of a clinical trial is an honor. DO IT.TeriFrom: Trudy <trudykinsey@ sbcglobal. net>Hcv < >Sent: Thu, May 13, 2010 6:06:34 PMSubject: [ ] Drug trial There is a trial recruiting in my area...Peg. Inteferon & Ribavirin with Fluvastatin in treatment-naive type 2 & 3 . So, Don, what do you know about this? And , Gloria, would you reccomend taking part in trial ? I have insurance, but this would negate all those co- pays & shares that insurance won't cover. Just wondering... And wanting y'alls opinions.... http://facebook. com/people/ andTrudy- Kinsey/134046087 7 " "A well- behaved woman never made history" http://allrecipes. com/cook/ TrudyK/profile. aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2010 Report Share Posted May 14, 2010 TrudyAbsolutely, run for it!!! It's a great way to get through treatment with amazing support from a team too. They have to look after your well-being because, after all, you are a guinea pig for them LOLMy Trial was not Fluvastatin; but, I'm sure Don already knows what that is and I wouldn't think it's much different than mine if it's a Protease Inhibitor.Good LuckGloria There is a trial recruiting in my area...Peg. Inteferon & Ribavirin with Fluvastatin in treatment-naive type 2 & 3 . So, Don, what do you know about this? And , Gloria, would you reccomend taking part in trial ? I have insurance, but this would negate all those co- pays & shares that insurance won't cover. Just wondering... And wanting y'alls opinions.... http://facebook. com/people/ andTrudy- Kinsey/134046087 7 " "A well- behaved woman never made history" http://allrecipes. com/cook/ TrudyK/profile. aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2010 Report Share Posted May 14, 2010 Randy and TrudyMy sister-in-law was on the Trial as a treatment naive patient (never had done treatment before). They were having to monitor the levels of interferon that she was taking because it did cause some fluctuation in some of the blood work.Myself, I was on the exact same treatment; but, mine was the Trial for previous NR's that had shown promise in the beginning. Fortunately, during both treatments, my levels of medication never had to be changed one iota. I was in for blood tests so often that I thought I might get anaemic there for awhile. LOL However, my assigned clinical assistant stayed right on top of all the reports that were needed and read and gave me copies of everything. I felt like I was being treated like a princess and in fact, I still am being treated that way. I realized by last November that there was going to be another whole stage of the Trial that I will still be participating in for a very long time. Of course, that is because of the cancer.Randy, even if Trudy is just given the placebo instead of the Fluvastatin, it's no worse than just doing the acceptable treatment of today. In my case, I rather doubted that would happen and probably everyone in my Trial were on the actual inhibitor because of the very nature of how we got there.Trudy, if this is being done through a good Hepatitis Clinic, don't even think about it!! They will keep watch closely!!Gloria Whoa! Hold on a minute All. Do not think that because the drug companies are providing care that this means you will get good advice and doctors. The drug companies are in it for themselves. Their goal is to collect data. That does not mean they are in it for your best interest. At my local group Tuesday night we discussed this topic about trials. The gist was that on a recent trial (not hepC) 10 people died during the trial . Did they stop it. No. they continued testing at a lower dose. I will find out more about the exact trial for the group. They are not required to inform you of what their test and observations reveal, and you may get on the placebo side. Lets say they find you are anemic.Maybe they want to see how this runs it's course and don't inform you of it. I am not saying do not go for a trial. I am saying that thinking their doctors will give good doctoring is false. Why would they. They want to see how the drug performs on you and if this is negative, they want to know that too. If you go for it and get on one make sure to maintain you're own doctors and rely on their treatment, not the drug companies. Randy O Website-- SuncoastHepCFriends .OrgForum -- Suncoast HepC Friends ForumFrom: Teri Gottlieb <theresagottlieb> Sent: Thu, May 13, 2010 7:43:42 PMSubject: Re: [ ] Drug trial Trudy, I have 3 important words for you... GO FOR IT! It sounds like a win/win situation. You have nothing to lose and it's not going to cost you anything which is great in and of itself! This just might be the treatment that works, not only for you but for others that are still waiting. Being part of a clinical trial is an honor. DO IT.TeriFrom: Trudy <trudykinsey@ sbcglobal. net>Hcv < >Sent: Thu, May 13, 2010 6:06:34 PMSubject: [ ] Drug trial There is a trial recruiting in my area...Peg. Inteferon & Ribavirin with Fluvastatin in treatment-naive type 2 & 3 . So, Don, what do you know about this? And , Gloria, would you reccomend taking part in trial ? I have insurance, but this would negate all those co- pays & shares that insurance won't cover. Just wondering... And wanting y'alls opinions.... http://facebook. com/people/ andTrudy- Kinsey/134046087 7 " "A well- behaved woman never made history" http://allrecipes. com/cook/ TrudyK/profile. aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2010 Report Share Posted May 14, 2010 OK - I'm backing up a step or two here. On the top of the page that Don posted is already a warning not to take the Fluvastatin if you have liver disease. What's up with that??? I'm going into search as well...Gloria There is a trial recruiting in my area...Peg. Inteferon & Ribavirin with Fluvastatin in treatment-naive type 2 & 3 . So, Don, what do you know about this? And , Gloria, would you reccomend taking part in trial ? I have insurance, but this would negate all those co- pays & shares that insurance won't cover. Just wondering... And wanting y'alls opinions.... http://facebook. com/people/ andTrudy- Kinsey/134046087 7 " "A well- behaved woman never made history" http://allrecipes. com/cook/ TrudyK/profile. aspx Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.