Guest guest Posted December 7, 2001 Report Share Posted December 7, 2001 Hi Claudine Yes, you are right...if my PC doc read those results properly....and I don't have fibrosis, I will definitely wait for the peg combo to be okayed in Canada. Our good Doc on the forum has already answered my questions of when I should go on treatment...I will be closely following her suggestions, cuz she makes more sense than any other Doc I've known. So sorry about your son leaving...this will be a true test of strength for you. I don't know how I would take this news...except being very, very upset. I don't know how old your son is...but I don't believe in sending kids to fight battles....anyone under 21 should not go. Oh dear, the " fun " of being a Mom, it never goes away Claudine...we will always worry cuz they are still our " babies " no matter what their age is. Take good care of yourself during this. Hugggggs Carol (mother of a 25 year old son) claudine intexas wrote: > > --- Carol <csean@...> wrote: > > > No, nothing you said has turned me off treatment. > > It's just > > everything about it....depending on how the results > > are at Doc on the > > 19th...well, that's when I make up my mind, I guess. > > If I can locate > > my mind that day? LOL. > > Don't feel pushed to make a decision that day! Take > your time to think it over, consider all factors. If > you have no fibrosis you can afford to do this. > Claudine > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2001 Report Share Posted December 7, 2001 Hi Claudine Yes, you are right...if my PC doc read those results properly....and I don't have fibrosis, I will definitely wait for the peg combo to be okayed in Canada. Our good Doc on the forum has already answered my questions of when I should go on treatment...I will be closely following her suggestions, cuz she makes more sense than any other Doc I've known. So sorry about your son leaving...this will be a true test of strength for you. I don't know how I would take this news...except being very, very upset. I don't know how old your son is...but I don't believe in sending kids to fight battles....anyone under 21 should not go. Oh dear, the " fun " of being a Mom, it never goes away Claudine...we will always worry cuz they are still our " babies " no matter what their age is. Take good care of yourself during this. Hugggggs Carol (mother of a 25 year old son) claudine intexas wrote: > > --- Carol <csean@...> wrote: > > > No, nothing you said has turned me off treatment. > > It's just > > everything about it....depending on how the results > > are at Doc on the > > 19th...well, that's when I make up my mind, I guess. > > If I can locate > > my mind that day? LOL. > > Don't feel pushed to make a decision that day! Take > your time to think it over, consider all factors. If > you have no fibrosis you can afford to do this. > Claudine > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2001 Report Share Posted December 7, 2001 Hi Claudine Yes, you are right...if my PC doc read those results properly....and I don't have fibrosis, I will definitely wait for the peg combo to be okayed in Canada. Our good Doc on the forum has already answered my questions of when I should go on treatment...I will be closely following her suggestions, cuz she makes more sense than any other Doc I've known. So sorry about your son leaving...this will be a true test of strength for you. I don't know how I would take this news...except being very, very upset. I don't know how old your son is...but I don't believe in sending kids to fight battles....anyone under 21 should not go. Oh dear, the " fun " of being a Mom, it never goes away Claudine...we will always worry cuz they are still our " babies " no matter what their age is. Take good care of yourself during this. Hugggggs Carol (mother of a 25 year old son) claudine intexas wrote: > > --- Carol <csean@...> wrote: > > > No, nothing you said has turned me off treatment. > > It's just > > everything about it....depending on how the results > > are at Doc on the > > 19th...well, that's when I make up my mind, I guess. > > If I can locate > > my mind that day? LOL. > > Don't feel pushed to make a decision that day! Take > your time to think it over, consider all factors. If > you have no fibrosis you can afford to do this. > Claudine > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Carol, I'm confused - I thought you already had your biopsy, and it came back good. Guess I'm having one of those 'brain-fog' moments... I'm a 1b too, so - I know the odds. Unless you have major fibrosis I'd wait for the pegylated combo. It significantly increases your odds over the old combo. Unless they would approve DAILY injections of interferon, which I doubt. Daily injections are the only thing that comes close to mimicking pegylated - it is keeping a constant, steady amount of interferon in your body that does the trick. The old interferon only lasts LESS than 24 hours in your body. Too much time inbetween injections for the virus to rebound - and it does! Wait for the peg if you can. It can't be too much longer. They were using it in England before the US! As for qualifying, right now, in the US at least, it is only approved for those who have never been on treatment before, although doctors are still prescribing it for previous relapsers and non-responders. Previous treatment does give insurance companies here an excuse to not cover it though, if they are looking for one. And, it seems like they would have to do a viral load before you begin treatment, since that would be the only way to know if you are responding or not. I wouldn't worry about it until then, it's not really that important. But I wouldn't consider the old combo unless your liver is in such bad shape you need to do something NOW. I'd wait - stall, whatever. Good luck, Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Carol, I'm confused - I thought you already had your biopsy, and it came back good. Guess I'm having one of those 'brain-fog' moments... I'm a 1b too, so - I know the odds. Unless you have major fibrosis I'd wait for the pegylated combo. It significantly increases your odds over the old combo. Unless they would approve DAILY injections of interferon, which I doubt. Daily injections are the only thing that comes close to mimicking pegylated - it is keeping a constant, steady amount of interferon in your body that does the trick. The old interferon only lasts LESS than 24 hours in your body. Too much time inbetween injections for the virus to rebound - and it does! Wait for the peg if you can. It can't be too much longer. They were using it in England before the US! As for qualifying, right now, in the US at least, it is only approved for those who have never been on treatment before, although doctors are still prescribing it for previous relapsers and non-responders. Previous treatment does give insurance companies here an excuse to not cover it though, if they are looking for one. And, it seems like they would have to do a viral load before you begin treatment, since that would be the only way to know if you are responding or not. I wouldn't worry about it until then, it's not really that important. But I wouldn't consider the old combo unless your liver is in such bad shape you need to do something NOW. I'd wait - stall, whatever. Good luck, Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Carol, I'm confused - I thought you already had your biopsy, and it came back good. Guess I'm having one of those 'brain-fog' moments... I'm a 1b too, so - I know the odds. Unless you have major fibrosis I'd wait for the pegylated combo. It significantly increases your odds over the old combo. Unless they would approve DAILY injections of interferon, which I doubt. Daily injections are the only thing that comes close to mimicking pegylated - it is keeping a constant, steady amount of interferon in your body that does the trick. The old interferon only lasts LESS than 24 hours in your body. Too much time inbetween injections for the virus to rebound - and it does! Wait for the peg if you can. It can't be too much longer. They were using it in England before the US! As for qualifying, right now, in the US at least, it is only approved for those who have never been on treatment before, although doctors are still prescribing it for previous relapsers and non-responders. Previous treatment does give insurance companies here an excuse to not cover it though, if they are looking for one. And, it seems like they would have to do a viral load before you begin treatment, since that would be the only way to know if you are responding or not. I wouldn't worry about it until then, it's not really that important. But I wouldn't consider the old combo unless your liver is in such bad shape you need to do something NOW. I'd wait - stall, whatever. Good luck, Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Carol, I'm confused - I thought you already had your biopsy, and it came back good. Guess I'm having one of those 'brain-fog' moments... I'm a 1b too, so - I know the odds. Unless you have major fibrosis I'd wait for the pegylated combo. It significantly increases your odds over the old combo. Unless they would approve DAILY injections of interferon, which I doubt. Daily injections are the only thing that comes close to mimicking pegylated - it is keeping a constant, steady amount of interferon in your body that does the trick. The old interferon only lasts LESS than 24 hours in your body. Too much time inbetween injections for the virus to rebound - and it does! Wait for the peg if you can. It can't be too much longer. They were using it in England before the US! As for qualifying, right now, in the US at least, it is only approved for those who have never been on treatment before, although doctors are still prescribing it for previous relapsers and non-responders. Previous treatment does give insurance companies here an excuse to not cover it though, if they are looking for one. And, it seems like they would have to do a viral load before you begin treatment, since that would be the only way to know if you are responding or not. I wouldn't worry about it until then, it's not really that important. But I wouldn't consider the old combo unless your liver is in such bad shape you need to do something NOW. I'd wait - stall, whatever. Good luck, Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 claudine intexas wrote: > > Carol, > I'm confused - I thought you already had your > biopsy, and it came back good. Guess I'm having one of > those 'brain-fog' moments... No Claudine, you don't have brain-fog. In fact, it was my PC Doc who looked at some of the test results and told me I had no fibrosis. After, I wondered how he knew that...of course he didn't know that. I guess he was reading some test wrong. I found out from the Gastro that no test except a biopsy can tell that, which I already figured out. So, that's the confusion. I really don't know what to do. I wanted to wait for the peg, but from the sound of this GI, I would have a very long wait. Things just work differently in Canada. He told me the cost of treatment for the peg would cost the government $40,000, the cost of the standard treatment is $17,000. So you can see the problems already. All my life I enjoyed the benefits of socialized medicine...never paying a thing for tests, surgeries, doc visits etc etc. Now the crunch comes...just how many people will be allowed the new treatment?? See the problem? I will see how the biopsy goes...then will post again with the results. I'll need everyone's, especially yours, feedback on this then. Thanks Claudine Hugggs Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 claudine intexas wrote: > > Carol, > I'm confused - I thought you already had your > biopsy, and it came back good. Guess I'm having one of > those 'brain-fog' moments... No Claudine, you don't have brain-fog. In fact, it was my PC Doc who looked at some of the test results and told me I had no fibrosis. After, I wondered how he knew that...of course he didn't know that. I guess he was reading some test wrong. I found out from the Gastro that no test except a biopsy can tell that, which I already figured out. So, that's the confusion. I really don't know what to do. I wanted to wait for the peg, but from the sound of this GI, I would have a very long wait. Things just work differently in Canada. He told me the cost of treatment for the peg would cost the government $40,000, the cost of the standard treatment is $17,000. So you can see the problems already. All my life I enjoyed the benefits of socialized medicine...never paying a thing for tests, surgeries, doc visits etc etc. Now the crunch comes...just how many people will be allowed the new treatment?? See the problem? I will see how the biopsy goes...then will post again with the results. I'll need everyone's, especially yours, feedback on this then. Thanks Claudine Hugggs Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 claudine intexas wrote: > > Carol, > I'm confused - I thought you already had your > biopsy, and it came back good. Guess I'm having one of > those 'brain-fog' moments... No Claudine, you don't have brain-fog. In fact, it was my PC Doc who looked at some of the test results and told me I had no fibrosis. After, I wondered how he knew that...of course he didn't know that. I guess he was reading some test wrong. I found out from the Gastro that no test except a biopsy can tell that, which I already figured out. So, that's the confusion. I really don't know what to do. I wanted to wait for the peg, but from the sound of this GI, I would have a very long wait. Things just work differently in Canada. He told me the cost of treatment for the peg would cost the government $40,000, the cost of the standard treatment is $17,000. So you can see the problems already. All my life I enjoyed the benefits of socialized medicine...never paying a thing for tests, surgeries, doc visits etc etc. Now the crunch comes...just how many people will be allowed the new treatment?? See the problem? I will see how the biopsy goes...then will post again with the results. I'll need everyone's, especially yours, feedback on this then. Thanks Claudine Hugggs Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 claudine intexas wrote: > > Carol, > I'm confused - I thought you already had your > biopsy, and it came back good. Guess I'm having one of > those 'brain-fog' moments... No Claudine, you don't have brain-fog. In fact, it was my PC Doc who looked at some of the test results and told me I had no fibrosis. After, I wondered how he knew that...of course he didn't know that. I guess he was reading some test wrong. I found out from the Gastro that no test except a biopsy can tell that, which I already figured out. So, that's the confusion. I really don't know what to do. I wanted to wait for the peg, but from the sound of this GI, I would have a very long wait. Things just work differently in Canada. He told me the cost of treatment for the peg would cost the government $40,000, the cost of the standard treatment is $17,000. So you can see the problems already. All my life I enjoyed the benefits of socialized medicine...never paying a thing for tests, surgeries, doc visits etc etc. Now the crunch comes...just how many people will be allowed the new treatment?? See the problem? I will see how the biopsy goes...then will post again with the results. I'll need everyone's, especially yours, feedback on this then. Thanks Claudine Hugggs Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 --- Carol <csean@...> wrote: I will see how the biopsy goes...then > will post again > with the results. That is the best thing to do. Knowing the results of that will really be the best guide of what to do. If the results are good, you can afford to wait - the cost will come down when Schering has some competition, which shouldn't be all that much longer. The Roche brand of peg should be out sometime in 2002, and Schering's sole rights to ribavirin expire at the end of this year. Other companies have already filed with the FDA to produce a generic brand, and although Schering is of course trying to stop it, they can only delay it. I don't guess there is really much point in worrying about it until you know the results of your biopsy! Good luck! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 --- Carol <csean@...> wrote: I will see how the biopsy goes...then > will post again > with the results. That is the best thing to do. Knowing the results of that will really be the best guide of what to do. If the results are good, you can afford to wait - the cost will come down when Schering has some competition, which shouldn't be all that much longer. The Roche brand of peg should be out sometime in 2002, and Schering's sole rights to ribavirin expire at the end of this year. Other companies have already filed with the FDA to produce a generic brand, and although Schering is of course trying to stop it, they can only delay it. I don't guess there is really much point in worrying about it until you know the results of your biopsy! Good luck! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 --- Carol <csean@...> wrote: I will see how the biopsy goes...then > will post again > with the results. That is the best thing to do. Knowing the results of that will really be the best guide of what to do. If the results are good, you can afford to wait - the cost will come down when Schering has some competition, which shouldn't be all that much longer. The Roche brand of peg should be out sometime in 2002, and Schering's sole rights to ribavirin expire at the end of this year. Other companies have already filed with the FDA to produce a generic brand, and although Schering is of course trying to stop it, they can only delay it. I don't guess there is really much point in worrying about it until you know the results of your biopsy! Good luck! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 --- Carol <csean@...> wrote: I will see how the biopsy goes...then > will post again > with the results. That is the best thing to do. Knowing the results of that will really be the best guide of what to do. If the results are good, you can afford to wait - the cost will come down when Schering has some competition, which shouldn't be all that much longer. The Roche brand of peg should be out sometime in 2002, and Schering's sole rights to ribavirin expire at the end of this year. Other companies have already filed with the FDA to produce a generic brand, and although Schering is of course trying to stop it, they can only delay it. I don't guess there is really much point in worrying about it until you know the results of your biopsy! Good luck! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Thanks le. I am grateful for any Tae Bo I can get in. I have to have 2 fans aimed at me and going full blast though! LOL! With MS, if I get overheated, the symptoms flare up. Carol In a message dated 12/21/2001 2:46:13 PM Pacific Standard Time, ravin@... writes: > I'm sorry about your health troubles. That is awesome that you are > getting some Taebo in. (((hugs to you))) - I hope 2002 brings you > better luck with the MS. > > le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Oh Carol, I am so sorry ;o( Wish I could do something for you... Are you still taking treatments?? You are such a BRAVE Lady !!! {{{ Healthy Hugs and Much Love }}} Helen ,I am not here much. Have been going through some major trials but making it. Lost a mother in law last week and this week completely lost my voice. Once vocal cord is paralyzed and the other almost is. I had been whispering for a long time but can't even do that now. am trying to adjust and just dealing with the feelings as they come up. carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Oh Carol, I'm Sorry... How are you holding up??? Are you still taking your treatments??? If so how many more do you have to go??? You have been so brave... You are one heck of a person!!! Love Ya!!! Helen ,I am not here much. Have been going through some major trials but making it. Lost a mother in law last week and this week completely lost my voice. Once vocal cord is paralyzed and the other almost is. I had been whispering for a long time but can't even do that now. am trying to adjust and just dealing with the feelings as they come up. carol You're Precious in His Eyes Trust God today He's still in charge, Your life is safe with Him. To Him your path ahead is bright, Although to you it's dim. Just place your trust in Him each day, Each second and each hour. Though you are weak and have no strength, He is a God of power. He'll lead you and He'll strengthen you And He'll stay by your side. Let Him be your everything And in His peace abide. There's nothing in your life, my friend, That takes God by surprise. He's in control and He loves you-- You're precious in His eyes. Bob Hefner '98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Carol - I hope that you don't mind I have a question for you? Did you go back to drinking caffeine products after your doctor said it was ok? I did the same thing, and one morning it just smelled so good and I said the heck with it I take all kinds of pills, I can't do this or I can't do that so I am going to have at least two cups of coffee a day and I have been. Do you think I should be. Thanks for your help. Hewitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 In a message dated 1/19/02 11:52:05 PM Pacific Standard Time, mhe3053904@... writes: Carol - I hope that you don't mind I have a question for you? Did you go back to drinking caffeine products after your doctor said it was ok? I did the same thing, and one morning it just smelled so good and I said the heck with it I take all kinds of pills, I can't do this or I can't do that so I am going to have at least two cups of coffee a day and I have been. Do you think I should be. Thanks for your help. Hewitt My doctor said it wouldn't make a bit of difference whether I drank coffee or not. He could be wrong, of course, and your case could be different from mine. Harper (AIH dx 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Hi! Before I started on interferon therapy Scheering held a class at my doctors office and they told us not to drink coffee or cokes because those products promote the loss of fluids in your body and interferon does the same so they worry about dihadration which could cause extreme fatigue. But I love coffee too so when I have a cup I just increase my fluid intake for that day. So far so good but just to keep my doctor happy I keep that little trick to myself. God bless! tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 , no doctor has ever told me that coffee was not good to drink. I love the smell of it. SOme things are just way too difficult to stop! debby Re: [ ] Carol Carol - I hope that you don't mind I have a question for you? Did you go back to drinking caffeine products after your doctor said it was ok? I did the same thing,and one morning it just smelled so good and I said the heck with it I take all kinds of pills, I can't do this or I can't do that so I am going to have at least two cups of coffeea day and I have been. Do you think I should be. Thanks for your help. Hewitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 I don't have problems drinking coffee but I'm not suppose to drink the caffeine because of migraines, not the AIH. So I drink de-cafe. AnnCT dx1994 Re: [ ] Carol In a message dated 1/19/02 11:52:05 PM Pacific Standard Time, mhe3053904@... writes: Carol - I hope that you don't mind I have a question for you? Did you go back to drinking caffeine products after your doctor said it was ok? I did the same thing, and one morning it just smelled so good and I said the heck with it I take all kinds of pills, I can't do this or I can't do that so I am going to have at least two cups of coffee a day and I have been. Do you think I should be. Thanks for your help. Hewitt My doctor said it wouldn't make a bit of difference whether I drank coffee or not. He could be wrong, of course, and your case could be different from mine. Harper (AIH dx 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 It's a shame when they don't listen to us and try harder to help... My old Dr. would have kept looking into the situation until he would have had an answer, because he knew I did not go to the Dr's. unless I just couldn't handle whatever is wrong anymore... Him and my Rheumy, which were both Great Dr's. gave up their practices and retired early, because they were tired of the insurance companys dictating to them what test's their patient's needed and didn't need, and they both just got fed up... That's a shame because they were the two best Dr's. I have ever had... Sorry you had to go through the same with your liver... It's just a shame... {{{ Special Hugs }}} Helen Helen-I totally understand what you went through as I had a similar situation in getting my liver disease dx-am so thankful they finally took care of you. carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 yes, helen, it was unfortunate but right now I could not ask for better medical care for which i am deeply grateful. carol On Wed, 23 Jan 2002 23:19:54 EST angelbear1129@... writes: It's a shame when they don't listen to us and try harder to help... My old Dr. would have kept looking into the situation until he would have had an answer, because he knew I did not go to the Dr's. unless I just couldn't handle whatever is wrong anymore... Him and my Rheumy, which were both Great Dr's. gave up their practices and retired early, because they were tired of the insurance companys dictating to them what test's their patient's needed and didn't need, and they both just got fed up... That's a shame because they were the two best Dr's. I have ever had... Sorry you had to go through the same with your liver... It's just a shame... {{{ Special Hugs }}} Helen Helen-I totally understand what you went through as I had a similar situation in getting my liver disease dx-am so thankful they finally took care of you. carol ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMemorial Pagehttp://www.dreamwater.net/lovingmemory/Message Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at # on IRC DALnet./files/chat.htmBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
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