Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Terry, I wish I hadn't done treatment either. The treatment can trigger things in our bodies or cause problems that we never dreamed would happen. This stuff is serious business. People think cancer patients do chemo and are only sick while on the chemo... NOT! The chemo often wrecks their life even after the cancer is gone. It can be the same with hep treatment for some people. On a local fibro list I got this url: http://fibroandfatigue.com/ that might be of interest to some of you. Terry, have you tried Neurontin? Just curious. People with recurrent migraines often respond to this medication (I didn't btw, while I was on tx I got terrible migraines, but thankfully they have dissipated off tx). Getting the 6 - 8 hours of good sleep, esp stage 4 sleep (with the help of meds) is what keeps my daily pain away the most. Without sleep meds, I sleep maybe 2 hours at a time, somtimes only per day, and hurt worse each day I don't sleep. But, when I get regular stage 4 sleep, the pain starts to subside and I have many more pain-free days. Good luck. Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hi Terry, Alley, and all. The more I think about attempting treatment again, and the more I read and study and hear from others who have been through treatment, the more inclined I am to not want to attempt it again. I only lasted three weeks on it anyhow (had to be pulled because I developed an infection, very quickly so, in my mouth and almost became septic from it). My wbcs weren't low enough for the docs to put me on Neupogen, but my mouth (gums) became badly infected in that third week, and my wbcs were too low for the periodontist to get in there and " deep scale and clean " (too high risk for hemorrhage and septicemia with those low wbcs and dropping platelets). Peridontist told GI doc " she's in bad shape, but I can't touch her until those wbcs and platelets come up " . GI doc pulled me from treatment. While waiting for my wbcs to climb, my ankles began swelling. I called the GI doc, and he told me to get to the ER immediately. They were 2+ pitting edema, and I was retaining fluid all over (fingers, face, etc). I had to drive myself because I'm single, I have no one to help me, and so off to the ER I drive -- 25 miles -- at 9 p.m., scared to death. Due to low wbcs, they masked me right away and then commenced to rule out DVT (deep vein thrombosis), which I had never had before. And of course, they would come in every 15 minutes and ask " are you having any difficulty breathing? " . Being a nurse, I knew why they were asking, and I was scared to death I was going to throw a clot and DIE from a pulmonary embolism. After 17 awful hours in the ER and DVT being ruled out by doppler, my GI doc thought I might have an underlying blood disorder, such as hemophilia or Protein S Deficiency Syndrome, and so he referred me to Hem / Onc after release from the ER. I was so mad and so exhausted, I only wanted to go home, but GI doc insisted I go to Hem / Onc, and so I went. After being off treatment for about a month and having my blood pulled weekly and my mouth finally fixed by peridontist, all my labs (including AST / ALT) returned to " within normal limits " . I was released from Hem / Onc, (underlying blood disorder was ruled out). Protein S Deficiency Syndrome can be congenital or acquired. It was believed by Hem / Onc to be " acquired " in my case (since I was on treatment) and it was believed by Hem / Onc that it would spontaneously resolve, and it did. It was treatment-related. After I was released by Hem / Onc and peridontist, I went for followup with GI doc in January. He told me my labs looked great, my physical exam was normal, and that I was still a candidate for treatment. He said if I ever wanted to do it again, they would probably put me on a lower dose, or possibly a maintenance dose, and that I could go home and think about it and he'd see me again in six months. Well -- it's six months. I think I've thought about it long enough. I've told my family and very close friends that I don't want to attempt it again, and they can understand why. I'm single, I live alone, I have a house and yard to upkeep, 4 big dogs, 4 cats (like my children), I have eldery parents -- one with dementia (my mom) and since my dad still works -- I do a lot for her (visit her every day and make sure she is OK). I take her shopping, to the post office, etc. I feel fine now. Why in the HECK would ever want to put myself through treatment again when the chances of my dying from Hep C are very low to begin with? It took 27 years for my liver to advance to Grade 3 / Stage 2. (I think I've been carrying this virus since the 70's when I contracted NonA Non B back then). I might not ever advance to cirrhosis. I might remain at this Grade / Stage for the rest of my life. If I start pumping pegylated interferon and ribavirin in mega doses into my blood stream in an attempt to reach " SVR " , I'm going to be very sick -- possibly for years. But I'm still a candidate. (Yeah right). I'm a candidate, and GI docs DO enjoy kick-backs they get treating Hep C, too. I'm not saying they are doing it for the money, but ........ most of them will sure as HECK opt to treat the patient if they can. OK -- I'll shut up now - lol. I'm so sorry that those of you who went through treatment are not feeling good. Your stories sadden me, and they make me think long and hard. I would be very down and depressed had I been through that kind of treatment for that long and wasn't feeling better (or worse yet -- feeling worse). But it happens to some people (I've read the warnings and have been very scared of those warnings myself). My heart goes out to you. Hang in there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hi Terry, Alley, and all. The more I think about attempting treatment again, and the more I read and study and hear from others who have been through treatment, the more inclined I am to not want to attempt it again. I only lasted three weeks on it anyhow (had to be pulled because I developed an infection, very quickly so, in my mouth and almost became septic from it). My wbcs weren't low enough for the docs to put me on Neupogen, but my mouth (gums) became badly infected in that third week, and my wbcs were too low for the periodontist to get in there and " deep scale and clean " (too high risk for hemorrhage and septicemia with those low wbcs and dropping platelets). Peridontist told GI doc " she's in bad shape, but I can't touch her until those wbcs and platelets come up " . GI doc pulled me from treatment. While waiting for my wbcs to climb, my ankles began swelling. I called the GI doc, and he told me to get to the ER immediately. They were 2+ pitting edema, and I was retaining fluid all over (fingers, face, etc). I had to drive myself because I'm single, I have no one to help me, and so off to the ER I drive -- 25 miles -- at 9 p.m., scared to death. Due to low wbcs, they masked me right away and then commenced to rule out DVT (deep vein thrombosis), which I had never had before. And of course, they would come in every 15 minutes and ask " are you having any difficulty breathing? " . Being a nurse, I knew why they were asking, and I was scared to death I was going to throw a clot and DIE from a pulmonary embolism. After 17 awful hours in the ER and DVT being ruled out by doppler, my GI doc thought I might have an underlying blood disorder, such as hemophilia or Protein S Deficiency Syndrome, and so he referred me to Hem / Onc after release from the ER. I was so mad and so exhausted, I only wanted to go home, but GI doc insisted I go to Hem / Onc, and so I went. After being off treatment for about a month and having my blood pulled weekly and my mouth finally fixed by peridontist, all my labs (including AST / ALT) returned to " within normal limits " . I was released from Hem / Onc, (underlying blood disorder was ruled out). Protein S Deficiency Syndrome can be congenital or acquired. It was believed by Hem / Onc to be " acquired " in my case (since I was on treatment) and it was believed by Hem / Onc that it would spontaneously resolve, and it did. It was treatment-related. After I was released by Hem / Onc and peridontist, I went for followup with GI doc in January. He told me my labs looked great, my physical exam was normal, and that I was still a candidate for treatment. He said if I ever wanted to do it again, they would probably put me on a lower dose, or possibly a maintenance dose, and that I could go home and think about it and he'd see me again in six months. Well -- it's six months. I think I've thought about it long enough. I've told my family and very close friends that I don't want to attempt it again, and they can understand why. I'm single, I live alone, I have a house and yard to upkeep, 4 big dogs, 4 cats (like my children), I have eldery parents -- one with dementia (my mom) and since my dad still works -- I do a lot for her (visit her every day and make sure she is OK). I take her shopping, to the post office, etc. I feel fine now. Why in the HECK would ever want to put myself through treatment again when the chances of my dying from Hep C are very low to begin with? It took 27 years for my liver to advance to Grade 3 / Stage 2. (I think I've been carrying this virus since the 70's when I contracted NonA Non B back then). I might not ever advance to cirrhosis. I might remain at this Grade / Stage for the rest of my life. If I start pumping pegylated interferon and ribavirin in mega doses into my blood stream in an attempt to reach " SVR " , I'm going to be very sick -- possibly for years. But I'm still a candidate. (Yeah right). I'm a candidate, and GI docs DO enjoy kick-backs they get treating Hep C, too. I'm not saying they are doing it for the money, but ........ most of them will sure as HECK opt to treat the patient if they can. OK -- I'll shut up now - lol. I'm so sorry that those of you who went through treatment are not feeling good. Your stories sadden me, and they make me think long and hard. I would be very down and depressed had I been through that kind of treatment for that long and wasn't feeling better (or worse yet -- feeling worse). But it happens to some people (I've read the warnings and have been very scared of those warnings myself). My heart goes out to you. Hang in there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 personally I think you've made the right decision. Treatment may be totally wrong for you. And who knows, we may have something better before long (not that I see anything that doesn't involve interferon with it yet). What genotype are ya? Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 personally I think you've made the right decision. Treatment may be totally wrong for you. And who knows, we may have something better before long (not that I see anything that doesn't involve interferon with it yet). What genotype are ya? Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 personally I think you've made the right decision. Treatment may be totally wrong for you. And who knows, we may have something better before long (not that I see anything that doesn't involve interferon with it yet). What genotype are ya? Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 personally I think you've made the right decision. Treatment may be totally wrong for you. And who knows, we may have something better before long (not that I see anything that doesn't involve interferon with it yet). What genotype are ya? Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Hi Alley. I'm geno 1a. Stage 3 / grade 2. When the doc told me I had been cleared by all the specialists and was still a candidate, I asked him what they were going to do if my labs got all whacked out so quickly again, and he offered referring me to Duke for treatment (which is 150 miels away). He said they were " the experts " . Well, I sure as heck can't travel to Duke for treatment (at least I don't see this as reasonable), and I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same (as far as lab work, etc). My GI doc is supposed to be considered the top hepatologist (he's in a research group and treats many for HepC) in Greenville NC, and so I asked him if -- at all possible -- could I continue under his care and do the treatment under his care if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, and we will monitor your labs as usual, and we'll make sure your peridontal disease doesn't flare up, and there are drugs to help with the low wbcs and rbcs (I know that), and we might try you on maintenance, and we'll just have to take it week by week " . Since I felt so good (for the first time in years) on that followup appointment with him in January (which was the last time I saw him), I said " I think I want to think about this -- I feel great now, and I have no more symptoms of fatigue or anything -- I feel normal " . He agreed there was no rush to treat. In the past few weeks, I have had edema (not isolated to the lower legs, but the kind that makes you " puffy " feeling and causes imprints all over your body), I've been feeling " icky " again, sweating horribly again, kind of getting depressed feeling again, and I attribute this to the " waxing and waning of symptoms " , and to the heat. I keep telling myself " you'll feel better in October when it cools off -- lol " . To begin feeling poorly again is scary (after feeling so good for four months). So, feeling poorly, I've begun thinking about treatment again, but -- I just don't know if I want to go through it. I honestly don't think even my GI doc believes I'm going to respond very well, but -- being a GI doc -- I guess he feels duty-bound to offer the treatment to me if I want to do it. It's a hard, hard decision. I would love to be rid of this virus one day, and I would like to think I have " what it takes " to endure the treatment. I read notes sometimes from people who have been through treatment and have responded well (but not many). Mostly, it seems I read notes from people who have been through treatment and have either not made it or have relapsed or have taken on even worse symptoms because of their attempt to treat. Lately, when I think of my decision to NOT try treatment, I have found myself getting depressed. I can't get this mess out of my head -- lol. I can't find " peace of mind " with my decision to not try again -- even though I think it's a good decision. I just don't know anymore. Thanks for asking. It's cool here this morning (ahhhh -- only expected to get to 83 today compared to 93), and so I'm going to go get in my garden and dig up some earth and enjoy getting dirty! You have a good day. In a message dated 6/12/2004 11:45:22 PM Eastern Standard Time, alleypat@... writes: > personally I think you've made the right decision. Treatment may be > totally wrong for you. And who knows, we may have something better before long > (not that I see anything that doesn't involve interferon with it yet). > > What genotype are ya? > > Alley > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Hi Alley. I'm geno 1a. Stage 3 / grade 2. When the doc told me I had been cleared by all the specialists and was still a candidate, I asked him what they were going to do if my labs got all whacked out so quickly again, and he offered referring me to Duke for treatment (which is 150 miels away). He said they were " the experts " . Well, I sure as heck can't travel to Duke for treatment (at least I don't see this as reasonable), and I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same (as far as lab work, etc). My GI doc is supposed to be considered the top hepatologist (he's in a research group and treats many for HepC) in Greenville NC, and so I asked him if -- at all possible -- could I continue under his care and do the treatment under his care if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, and we will monitor your labs as usual, and we'll make sure your peridontal disease doesn't flare up, and there are drugs to help with the low wbcs and rbcs (I know that), and we might try you on maintenance, and we'll just have to take it week by week " . Since I felt so good (for the first time in years) on that followup appointment with him in January (which was the last time I saw him), I said " I think I want to think about this -- I feel great now, and I have no more symptoms of fatigue or anything -- I feel normal " . He agreed there was no rush to treat. In the past few weeks, I have had edema (not isolated to the lower legs, but the kind that makes you " puffy " feeling and causes imprints all over your body), I've been feeling " icky " again, sweating horribly again, kind of getting depressed feeling again, and I attribute this to the " waxing and waning of symptoms " , and to the heat. I keep telling myself " you'll feel better in October when it cools off -- lol " . To begin feeling poorly again is scary (after feeling so good for four months). So, feeling poorly, I've begun thinking about treatment again, but -- I just don't know if I want to go through it. I honestly don't think even my GI doc believes I'm going to respond very well, but -- being a GI doc -- I guess he feels duty-bound to offer the treatment to me if I want to do it. It's a hard, hard decision. I would love to be rid of this virus one day, and I would like to think I have " what it takes " to endure the treatment. I read notes sometimes from people who have been through treatment and have responded well (but not many). Mostly, it seems I read notes from people who have been through treatment and have either not made it or have relapsed or have taken on even worse symptoms because of their attempt to treat. Lately, when I think of my decision to NOT try treatment, I have found myself getting depressed. I can't get this mess out of my head -- lol. I can't find " peace of mind " with my decision to not try again -- even though I think it's a good decision. I just don't know anymore. Thanks for asking. It's cool here this morning (ahhhh -- only expected to get to 83 today compared to 93), and so I'm going to go get in my garden and dig up some earth and enjoy getting dirty! You have a good day. In a message dated 6/12/2004 11:45:22 PM Eastern Standard Time, alleypat@... writes: > personally I think you've made the right decision. Treatment may be > totally wrong for you. And who knows, we may have something better before long > (not that I see anything that doesn't involve interferon with it yet). > > What genotype are ya? > > Alley > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Hi Alley. I'm geno 1a. Stage 3 / grade 2. When the doc told me I had been cleared by all the specialists and was still a candidate, I asked him what they were going to do if my labs got all whacked out so quickly again, and he offered referring me to Duke for treatment (which is 150 miels away). He said they were " the experts " . Well, I sure as heck can't travel to Duke for treatment (at least I don't see this as reasonable), and I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same (as far as lab work, etc). My GI doc is supposed to be considered the top hepatologist (he's in a research group and treats many for HepC) in Greenville NC, and so I asked him if -- at all possible -- could I continue under his care and do the treatment under his care if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, and we will monitor your labs as usual, and we'll make sure your peridontal disease doesn't flare up, and there are drugs to help with the low wbcs and rbcs (I know that), and we might try you on maintenance, and we'll just have to take it week by week " . Since I felt so good (for the first time in years) on that followup appointment with him in January (which was the last time I saw him), I said " I think I want to think about this -- I feel great now, and I have no more symptoms of fatigue or anything -- I feel normal " . He agreed there was no rush to treat. In the past few weeks, I have had edema (not isolated to the lower legs, but the kind that makes you " puffy " feeling and causes imprints all over your body), I've been feeling " icky " again, sweating horribly again, kind of getting depressed feeling again, and I attribute this to the " waxing and waning of symptoms " , and to the heat. I keep telling myself " you'll feel better in October when it cools off -- lol " . To begin feeling poorly again is scary (after feeling so good for four months). So, feeling poorly, I've begun thinking about treatment again, but -- I just don't know if I want to go through it. I honestly don't think even my GI doc believes I'm going to respond very well, but -- being a GI doc -- I guess he feels duty-bound to offer the treatment to me if I want to do it. It's a hard, hard decision. I would love to be rid of this virus one day, and I would like to think I have " what it takes " to endure the treatment. I read notes sometimes from people who have been through treatment and have responded well (but not many). Mostly, it seems I read notes from people who have been through treatment and have either not made it or have relapsed or have taken on even worse symptoms because of their attempt to treat. Lately, when I think of my decision to NOT try treatment, I have found myself getting depressed. I can't get this mess out of my head -- lol. I can't find " peace of mind " with my decision to not try again -- even though I think it's a good decision. I just don't know anymore. Thanks for asking. It's cool here this morning (ahhhh -- only expected to get to 83 today compared to 93), and so I'm going to go get in my garden and dig up some earth and enjoy getting dirty! You have a good day. In a message dated 6/12/2004 11:45:22 PM Eastern Standard Time, alleypat@... writes: > personally I think you've made the right decision. Treatment may be > totally wrong for you. And who knows, we may have something better before long > (not that I see anything that doesn't involve interferon with it yet). > > What genotype are ya? > > Alley > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Hi Alley. I'm geno 1a. Stage 3 / grade 2. When the doc told me I had been cleared by all the specialists and was still a candidate, I asked him what they were going to do if my labs got all whacked out so quickly again, and he offered referring me to Duke for treatment (which is 150 miels away). He said they were " the experts " . Well, I sure as heck can't travel to Duke for treatment (at least I don't see this as reasonable), and I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same (as far as lab work, etc). My GI doc is supposed to be considered the top hepatologist (he's in a research group and treats many for HepC) in Greenville NC, and so I asked him if -- at all possible -- could I continue under his care and do the treatment under his care if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, and we will monitor your labs as usual, and we'll make sure your peridontal disease doesn't flare up, and there are drugs to help with the low wbcs and rbcs (I know that), and we might try you on maintenance, and we'll just have to take it week by week " . Since I felt so good (for the first time in years) on that followup appointment with him in January (which was the last time I saw him), I said " I think I want to think about this -- I feel great now, and I have no more symptoms of fatigue or anything -- I feel normal " . He agreed there was no rush to treat. In the past few weeks, I have had edema (not isolated to the lower legs, but the kind that makes you " puffy " feeling and causes imprints all over your body), I've been feeling " icky " again, sweating horribly again, kind of getting depressed feeling again, and I attribute this to the " waxing and waning of symptoms " , and to the heat. I keep telling myself " you'll feel better in October when it cools off -- lol " . To begin feeling poorly again is scary (after feeling so good for four months). So, feeling poorly, I've begun thinking about treatment again, but -- I just don't know if I want to go through it. I honestly don't think even my GI doc believes I'm going to respond very well, but -- being a GI doc -- I guess he feels duty-bound to offer the treatment to me if I want to do it. It's a hard, hard decision. I would love to be rid of this virus one day, and I would like to think I have " what it takes " to endure the treatment. I read notes sometimes from people who have been through treatment and have responded well (but not many). Mostly, it seems I read notes from people who have been through treatment and have either not made it or have relapsed or have taken on even worse symptoms because of their attempt to treat. Lately, when I think of my decision to NOT try treatment, I have found myself getting depressed. I can't get this mess out of my head -- lol. I can't find " peace of mind " with my decision to not try again -- even though I think it's a good decision. I just don't know anymore. Thanks for asking. It's cool here this morning (ahhhh -- only expected to get to 83 today compared to 93), and so I'm going to go get in my garden and dig up some earth and enjoy getting dirty! You have a good day. In a message dated 6/12/2004 11:45:22 PM Eastern Standard Time, alleypat@... writes: > personally I think you've made the right decision. Treatment may be > totally wrong for you. And who knows, we may have something better before long > (not that I see anything that doesn't involve interferon with it yet). > > What genotype are ya? > > Alley > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi Claudine. I keep leaning more and more towards the thoughs of wanting to try treatment again. When Iook back on it, I was only on it for three weeks, and the only thing that happened to me was that risk of becoming septic due to this underlying peridontal disease, which docs assure me they will stay on top of, and which I'm surely staying on top of! (I've more implements of destruction for mouth care than one can imagine - lol - and I religiously do that mouth care now, and checkups with peridontist have been A+. I felt so dramtically improved overall within a few months of coming off treatment, I even wondered if three measly weeks worth could have reduced the inflammation in my liver. My AST / ALT's returned to within normal limits for some reason. All I know is that -- for some reason -- I felt like a brand new person by January (and for two years prior I could barely find the energy to get off the couch). Even though I live alone, I'm actually in a lot better position to treat than some. I'm not working; I do have a very good friend who has offered to help me get through this IF I decide to treat and have awful sides. My mom can manage without my assistance if need be (my folks would make arrangements to help me if I needed it). The house and yard work can just go to POT if need be, and all things can be taken care of -- in time -- if need be. Heck, for all I know, I might be OK during treatment and not suffer tremendously! My dad worked with a nurse who went through the treatment, and she worked the entire year while on treatment. Granted, there were days she called in sick, and she had some rough days, but she made it, she reached SVR, and she is still SVR (she was just finishing up treatment when I was diagnosed). So, that's two years for her, and she's doing fine. And -- if I fall to pieces on treatment and have a rough rough time, I've always got you guys to " bend an ear " - lol. I'm not any getting younger, and advancing to end stage liver disease on account of Hep C is something I want to try my best to avoid. The only way I know to avoid this is to 1) wish and hope it doesn't or 2) do more than just wish and hope and attempt the next best thing -- the treatment that's available today. I've got Medicare and do qualify for the Peggasist program, so -- I'm fortunate in that regard, too. Thinking ....... " better get while the getting's good " ! Have a good night. In a message dated 6/13/2004 9:37:47 PM Eastern Standard Time, claudineintexas@... writes: > It's to be expected that you will read and hear mostly from people > who do not respond well, who have a difficult time, and from those > who either don't respond or who relapse. It's normal - those are the > people needing the most support, and sometimes it just helps to let > off a little steam, or to complain. There's nothing wrong with that! > But there are LOTS of people who deal well with treatment, and there > are many many people who are responding to the peg/riba treatment. > And, while some people do have permanent problems resulting from the > treatment itself, they are the minority. You have to keep this in > perspective when making a decision whether to treat or not to treat. > You're not usually going to hear from the people who DON'T have any > long-term problems, and the people who do have a sustained viral > response often disappear from our lives, and so we forget all the > good stories! It's one thing for someone with little or no fibrosis > (like me) to decide not to treat right now, but anyone with advanced > fibrosis should really consider treatment. Even if you don't have a > viral response to treatment it might slow down or stop your fibrosis > from progressing, maybe even reversing some damage, allowing you more > time to wait for something more effective to come along. And, with > the peg/riba treatment there is actually a good chance you will > respond. Your doctor sounds willing to treat side effects > (important), and if you start out treatment in good shape (no dental > problems etc.) chances are you will do fine, even if it is hard and > no fun! Treatment may be very hard, but advancing liver disease and > cirrhosis can be much harder. > > Good luck! > Claudine > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi Claudine. I keep leaning more and more towards the thoughs of wanting to try treatment again. When Iook back on it, I was only on it for three weeks, and the only thing that happened to me was that risk of becoming septic due to this underlying peridontal disease, which docs assure me they will stay on top of, and which I'm surely staying on top of! (I've more implements of destruction for mouth care than one can imagine - lol - and I religiously do that mouth care now, and checkups with peridontist have been A+. I felt so dramtically improved overall within a few months of coming off treatment, I even wondered if three measly weeks worth could have reduced the inflammation in my liver. My AST / ALT's returned to within normal limits for some reason. All I know is that -- for some reason -- I felt like a brand new person by January (and for two years prior I could barely find the energy to get off the couch). Even though I live alone, I'm actually in a lot better position to treat than some. I'm not working; I do have a very good friend who has offered to help me get through this IF I decide to treat and have awful sides. My mom can manage without my assistance if need be (my folks would make arrangements to help me if I needed it). The house and yard work can just go to POT if need be, and all things can be taken care of -- in time -- if need be. Heck, for all I know, I might be OK during treatment and not suffer tremendously! My dad worked with a nurse who went through the treatment, and she worked the entire year while on treatment. Granted, there were days she called in sick, and she had some rough days, but she made it, she reached SVR, and she is still SVR (she was just finishing up treatment when I was diagnosed). So, that's two years for her, and she's doing fine. And -- if I fall to pieces on treatment and have a rough rough time, I've always got you guys to " bend an ear " - lol. I'm not any getting younger, and advancing to end stage liver disease on account of Hep C is something I want to try my best to avoid. The only way I know to avoid this is to 1) wish and hope it doesn't or 2) do more than just wish and hope and attempt the next best thing -- the treatment that's available today. I've got Medicare and do qualify for the Peggasist program, so -- I'm fortunate in that regard, too. Thinking ....... " better get while the getting's good " ! Have a good night. In a message dated 6/13/2004 9:37:47 PM Eastern Standard Time, claudineintexas@... writes: > It's to be expected that you will read and hear mostly from people > who do not respond well, who have a difficult time, and from those > who either don't respond or who relapse. It's normal - those are the > people needing the most support, and sometimes it just helps to let > off a little steam, or to complain. There's nothing wrong with that! > But there are LOTS of people who deal well with treatment, and there > are many many people who are responding to the peg/riba treatment. > And, while some people do have permanent problems resulting from the > treatment itself, they are the minority. You have to keep this in > perspective when making a decision whether to treat or not to treat. > You're not usually going to hear from the people who DON'T have any > long-term problems, and the people who do have a sustained viral > response often disappear from our lives, and so we forget all the > good stories! It's one thing for someone with little or no fibrosis > (like me) to decide not to treat right now, but anyone with advanced > fibrosis should really consider treatment. Even if you don't have a > viral response to treatment it might slow down or stop your fibrosis > from progressing, maybe even reversing some damage, allowing you more > time to wait for something more effective to come along. And, with > the peg/riba treatment there is actually a good chance you will > respond. Your doctor sounds willing to treat side effects > (important), and if you start out treatment in good shape (no dental > problems etc.) chances are you will do fine, even if it is hard and > no fun! Treatment may be very hard, but advancing liver disease and > cirrhosis can be much harder. > > Good luck! > Claudine > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi ... It's a tough question to treat again or not. Willem (where is that guy) did treatment 3x and responded the last time and has sustained that response. I'm finishing up my second round and responded at 3 months but I don't know what will happen post treatment. It's a pot shot...we don't know what harm treatment does to our bodies, but we do know what the hep will do. If you had a rough time with your first round, what treatment did you do...the peg or rebetron? I guess you would have to take into consideration what you went through during treatment vs. another round of treatment that could slow or reverse your fibrosis. I had many more sides on rebetron than on pegasys...the docs say it's cause the pegasys maintaines a consistent level in your system whereas the rebetron was up and down...my biggest problem on pegasys was the battle with anemia, but that was resonably maintained with epogen. And I could have dealt much better with the anemia had I not had to work...those stairs up to the public transportation train about did me in. I'm genotype 1b...stage and phase 2 when I had my biopsy back in '99. I'm going to ask the doctor at county if he would do a biopsy so I can see if my counts have changed. I've done two rounds of treatment since my biopsy. There is a fairly big difference between the pegs...pegasys is a different type of peg...it's a pegalated 2b or something like that while the PegInron is a 1a. Huge difference there...studies have proven that the PegIntron needs to be done more than once a week but I don't think they've changed their protocol (at least not to my knowledge). Pegasys stays in your system for a full week...and they are now doing studies on folks who did the PegIntron and either didn't respond or responded and then relapsed. So a Peg is not a Peg... And if you don't get a lot of sides, maintenance is not a bad thing. Smaller doses to keep the virus from replicating so fast. It's a tough decision, that's for sure. But I think if I don't sustain my response that I would be willing to go another round. Tatezi Re: migraines and sleep and stuff I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same...if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi ... It's a tough question to treat again or not. Willem (where is that guy) did treatment 3x and responded the last time and has sustained that response. I'm finishing up my second round and responded at 3 months but I don't know what will happen post treatment. It's a pot shot...we don't know what harm treatment does to our bodies, but we do know what the hep will do. If you had a rough time with your first round, what treatment did you do...the peg or rebetron? I guess you would have to take into consideration what you went through during treatment vs. another round of treatment that could slow or reverse your fibrosis. I had many more sides on rebetron than on pegasys...the docs say it's cause the pegasys maintaines a consistent level in your system whereas the rebetron was up and down...my biggest problem on pegasys was the battle with anemia, but that was resonably maintained with epogen. And I could have dealt much better with the anemia had I not had to work...those stairs up to the public transportation train about did me in. I'm genotype 1b...stage and phase 2 when I had my biopsy back in '99. I'm going to ask the doctor at county if he would do a biopsy so I can see if my counts have changed. I've done two rounds of treatment since my biopsy. There is a fairly big difference between the pegs...pegasys is a different type of peg...it's a pegalated 2b or something like that while the PegInron is a 1a. Huge difference there...studies have proven that the PegIntron needs to be done more than once a week but I don't think they've changed their protocol (at least not to my knowledge). Pegasys stays in your system for a full week...and they are now doing studies on folks who did the PegIntron and either didn't respond or responded and then relapsed. So a Peg is not a Peg... And if you don't get a lot of sides, maintenance is not a bad thing. Smaller doses to keep the virus from replicating so fast. It's a tough decision, that's for sure. But I think if I don't sustain my response that I would be willing to go another round. Tatezi Re: migraines and sleep and stuff I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same...if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi ... It's a tough question to treat again or not. Willem (where is that guy) did treatment 3x and responded the last time and has sustained that response. I'm finishing up my second round and responded at 3 months but I don't know what will happen post treatment. It's a pot shot...we don't know what harm treatment does to our bodies, but we do know what the hep will do. If you had a rough time with your first round, what treatment did you do...the peg or rebetron? I guess you would have to take into consideration what you went through during treatment vs. another round of treatment that could slow or reverse your fibrosis. I had many more sides on rebetron than on pegasys...the docs say it's cause the pegasys maintaines a consistent level in your system whereas the rebetron was up and down...my biggest problem on pegasys was the battle with anemia, but that was resonably maintained with epogen. And I could have dealt much better with the anemia had I not had to work...those stairs up to the public transportation train about did me in. I'm genotype 1b...stage and phase 2 when I had my biopsy back in '99. I'm going to ask the doctor at county if he would do a biopsy so I can see if my counts have changed. I've done two rounds of treatment since my biopsy. There is a fairly big difference between the pegs...pegasys is a different type of peg...it's a pegalated 2b or something like that while the PegInron is a 1a. Huge difference there...studies have proven that the PegIntron needs to be done more than once a week but I don't think they've changed their protocol (at least not to my knowledge). Pegasys stays in your system for a full week...and they are now doing studies on folks who did the PegIntron and either didn't respond or responded and then relapsed. So a Peg is not a Peg... And if you don't get a lot of sides, maintenance is not a bad thing. Smaller doses to keep the virus from replicating so fast. It's a tough decision, that's for sure. But I think if I don't sustain my response that I would be willing to go another round. Tatezi Re: migraines and sleep and stuff I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same...if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi ... It's a tough question to treat again or not. Willem (where is that guy) did treatment 3x and responded the last time and has sustained that response. I'm finishing up my second round and responded at 3 months but I don't know what will happen post treatment. It's a pot shot...we don't know what harm treatment does to our bodies, but we do know what the hep will do. If you had a rough time with your first round, what treatment did you do...the peg or rebetron? I guess you would have to take into consideration what you went through during treatment vs. another round of treatment that could slow or reverse your fibrosis. I had many more sides on rebetron than on pegasys...the docs say it's cause the pegasys maintaines a consistent level in your system whereas the rebetron was up and down...my biggest problem on pegasys was the battle with anemia, but that was resonably maintained with epogen. And I could have dealt much better with the anemia had I not had to work...those stairs up to the public transportation train about did me in. I'm genotype 1b...stage and phase 2 when I had my biopsy back in '99. I'm going to ask the doctor at county if he would do a biopsy so I can see if my counts have changed. I've done two rounds of treatment since my biopsy. There is a fairly big difference between the pegs...pegasys is a different type of peg...it's a pegalated 2b or something like that while the PegInron is a 1a. Huge difference there...studies have proven that the PegIntron needs to be done more than once a week but I don't think they've changed their protocol (at least not to my knowledge). Pegasys stays in your system for a full week...and they are now doing studies on folks who did the PegIntron and either didn't respond or responded and then relapsed. So a Peg is not a Peg... And if you don't get a lot of sides, maintenance is not a bad thing. Smaller doses to keep the virus from replicating so fast. It's a tough decision, that's for sure. But I think if I don't sustain my response that I would be willing to go another round. Tatezi Re: migraines and sleep and stuff I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same...if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi Tatezi. So you've been through both, huh? Wow! I was very disappointed when my first GI doc told me he only used PegIntron and Ribavirin (as I had heard that Pegasys was " better " because it stayed at a more consistent level the entire week (didn't peeter out). When I asked him about this, he commented (something to effect ) " they are both are tit for tat and one is not better than the other " . When I found out I would have to absorb 20% of what Medicare did not cover under his care, I had to seek another GI doc and was relieved to know that -- under his care -- I qualified for the Pegasys and Copegus (which was what I wanted to treat with anyway). Even he said, though, that both were about the same when push came to shove. These statements by both these GI docs made me wonder about their expertise (as I had heard so many good things about Pegasys in comparison to PegIntron). According to what I've seen on the internet, though, Pegasys is " better " , and so I'm glad -- if I do decide to treat, that I will be on Peg/Cop (I qualify under Roche for the patient assistance and can at least get these two drugs at no cost to me). Any side effect medications, though, such as Neupogen, Procrit, etc. I will have to absorb myself, which uh...... I'll have to depend on my family to help (they have said they will indeed help in this regard). I would rather be able to find a program to help cover the cost of those VERY expensive drugs, but this Medicare I've got covers NO drugs. Currently, I have to pay out of pocket for all prescription drugs (other than Peg/Cop). Currently, I only take Toprol and Valium, which aren't all that expensive, but -- when one starts getting into d rugs like Neuopen and Procrit, it can be enormously expensive. I consider myself VERY lucky that I'm not working (I'm on disability) and don't HAVE drag myself to work while attempting this treatment). If I decide to treat and begin to feel anything like I felt two years ago, there is no way in H I could drag myself to work. I'm going to think positive. The one thing I would wish for most would be to return to the work force one day. I feel very guilty at times for being on disability (what a blow), but then again -- I try not to feel too badly about it. Maybe one day -- if I get rid of this virus, I'll feel more at ease about attempting to return full time. But right now (even though I feel OK most days), I would really be putting my healthcare at risk if I attempted to return to work. I would not be insured )(pre-existing condition all in my records now). If I ever did return to work with HCV (and lost my disability benefits because I had returned to work), I'd be up the creek if I became symptomatic again and could no longer work, as I've heard it would be close to impossible to ever get back on disability IF I get off disability. My docs have cautioned me about returning to work -- even if I feel good -- because it could mean losing ALL access to health care -- permanently -- if I do. But if I could reach SVR and stay that way for a year and feel " normal " again, I'd be back at work. And Williem has gone through treatment three times ? ? ? And he's SVR now ? ? ? That is such good news. Best of luck to you. I hope your days at work won't be too tough on you. Hang in there. You're almost FINISHED!! You're going to be fine, I have all ideas. In a message dated 6/14/2004 7:57:46 PM Eastern Standard Time, tatezi@... writes: > Hi ... > > It's a tough question to treat again or not. Willem (where is that guy) did > treatment 3x and responded the last time and has sustained that response. I'm > finishing up my second round and responded at 3 months but I don't know what > will happen post treatment. It's a pot shot...we don't know what harm > treatment does to our bodies, but we do know what the hep will do. > > If you had a rough time with your first round, what treatment did you > do...the peg or rebetron? I guess you would have to take into consideration what > you went through during treatment vs. another round of treatment that could > slow or reverse your fibrosis. I had many more sides on rebetron than on > pegasys...the docs say it's cause the pegasys maintaines a consistent level in your > system whereas the rebetron was up and down...my biggest problem on pegasys > was the battle with anemia, but that was resonably maintained with epogen. And > I could have dealt much better with the anemia had I not had to work...those > stairs up to the public transportation train about did me in. > > I'm genotype 1b...stage and phase 2 when I had my biopsy back in '99. I'm > going to ask the doctor at county if he would do a biopsy so I can see if my > counts have changed. I've done two rounds of treatment since my biopsy. > > There is a fairly big difference between the pegs...pegasys is a different > type of peg...it's a pegalated 2b or something like that while the PegInron is > a 1a. Huge difference there...studies have proven that the PegIntron needs > to be done more than once a week but I don't think they've changed their > protocol (at least not to my knowledge). Pegasys stays in your system for a full > week...and they are now doing studies on folks who did the PegIntron and > either didn't respond or responded and then relapsed. > > So a Peg is not a Peg... > > And if you don't get a lot of sides, maintenance is not a bad thing. Smaller > doses to keep the virus from replicating so fast. > > It's a tough decision, that's for sure. But I think if I don't sustain my > response that I would be willing to go another round. > > Tatezi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi Tatezi. So you've been through both, huh? Wow! I was very disappointed when my first GI doc told me he only used PegIntron and Ribavirin (as I had heard that Pegasys was " better " because it stayed at a more consistent level the entire week (didn't peeter out). When I asked him about this, he commented (something to effect ) " they are both are tit for tat and one is not better than the other " . When I found out I would have to absorb 20% of what Medicare did not cover under his care, I had to seek another GI doc and was relieved to know that -- under his care -- I qualified for the Pegasys and Copegus (which was what I wanted to treat with anyway). Even he said, though, that both were about the same when push came to shove. These statements by both these GI docs made me wonder about their expertise (as I had heard so many good things about Pegasys in comparison to PegIntron). According to what I've seen on the internet, though, Pegasys is " better " , and so I'm glad -- if I do decide to treat, that I will be on Peg/Cop (I qualify under Roche for the patient assistance and can at least get these two drugs at no cost to me). Any side effect medications, though, such as Neupogen, Procrit, etc. I will have to absorb myself, which uh...... I'll have to depend on my family to help (they have said they will indeed help in this regard). I would rather be able to find a program to help cover the cost of those VERY expensive drugs, but this Medicare I've got covers NO drugs. Currently, I have to pay out of pocket for all prescription drugs (other than Peg/Cop). Currently, I only take Toprol and Valium, which aren't all that expensive, but -- when one starts getting into d rugs like Neuopen and Procrit, it can be enormously expensive. I consider myself VERY lucky that I'm not working (I'm on disability) and don't HAVE drag myself to work while attempting this treatment). If I decide to treat and begin to feel anything like I felt two years ago, there is no way in H I could drag myself to work. I'm going to think positive. The one thing I would wish for most would be to return to the work force one day. I feel very guilty at times for being on disability (what a blow), but then again -- I try not to feel too badly about it. Maybe one day -- if I get rid of this virus, I'll feel more at ease about attempting to return full time. But right now (even though I feel OK most days), I would really be putting my healthcare at risk if I attempted to return to work. I would not be insured )(pre-existing condition all in my records now). If I ever did return to work with HCV (and lost my disability benefits because I had returned to work), I'd be up the creek if I became symptomatic again and could no longer work, as I've heard it would be close to impossible to ever get back on disability IF I get off disability. My docs have cautioned me about returning to work -- even if I feel good -- because it could mean losing ALL access to health care -- permanently -- if I do. But if I could reach SVR and stay that way for a year and feel " normal " again, I'd be back at work. And Williem has gone through treatment three times ? ? ? And he's SVR now ? ? ? That is such good news. Best of luck to you. I hope your days at work won't be too tough on you. Hang in there. You're almost FINISHED!! You're going to be fine, I have all ideas. In a message dated 6/14/2004 7:57:46 PM Eastern Standard Time, tatezi@... writes: > Hi ... > > It's a tough question to treat again or not. Willem (where is that guy) did > treatment 3x and responded the last time and has sustained that response. I'm > finishing up my second round and responded at 3 months but I don't know what > will happen post treatment. It's a pot shot...we don't know what harm > treatment does to our bodies, but we do know what the hep will do. > > If you had a rough time with your first round, what treatment did you > do...the peg or rebetron? I guess you would have to take into consideration what > you went through during treatment vs. another round of treatment that could > slow or reverse your fibrosis. I had many more sides on rebetron than on > pegasys...the docs say it's cause the pegasys maintaines a consistent level in your > system whereas the rebetron was up and down...my biggest problem on pegasys > was the battle with anemia, but that was resonably maintained with epogen. And > I could have dealt much better with the anemia had I not had to work...those > stairs up to the public transportation train about did me in. > > I'm genotype 1b...stage and phase 2 when I had my biopsy back in '99. I'm > going to ask the doctor at county if he would do a biopsy so I can see if my > counts have changed. I've done two rounds of treatment since my biopsy. > > There is a fairly big difference between the pegs...pegasys is a different > type of peg...it's a pegalated 2b or something like that while the PegInron is > a 1a. Huge difference there...studies have proven that the PegIntron needs > to be done more than once a week but I don't think they've changed their > protocol (at least not to my knowledge). Pegasys stays in your system for a full > week...and they are now doing studies on folks who did the PegIntron and > either didn't respond or responded and then relapsed. > > So a Peg is not a Peg... > > And if you don't get a lot of sides, maintenance is not a bad thing. Smaller > doses to keep the virus from replicating so fast. > > It's a tough decision, that's for sure. But I think if I don't sustain my > response that I would be willing to go another round. > > Tatezi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 HI guys and dolls.Here I.am and reading your post everyday but for the second time in my life I.am in love which somebody much younger and it saps all my energy.It.s a impossible relation denounced by almost every good upright citizen but it.s the happiest time I had for a long time and those who denounce me can go to hell.I.am not throwing any bombs or torturing prisoners ,fornicating children or fill my pockets which tax-payers money.I.am making love,Tatezi has to wait,sorry gal.Yes I had three tX and the third one hits home.Two which the old treatment and the third one with Peg-interferon.I feel wonderfull because of the elixer of love but also I feel that I hve finally beaten the dragon.So go for it if your system can take it.Love to all of you Willem Re: migraines and sleep and stuff I'm inclined to believe that Peg / Rib is Peg / Rib like a rose is a rose. The protocol, I think, would be the just about the same...if I wanted to treat again, and he said " yes " . I asked him what they would do if I responded badly again, and he said " well... we will probably start you out at a lower dose next time, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 eh he -- someone knew you were " all wrapped up " in something -- lmao. I'm SO glad for you that it's a great something and that's it's the happiest time of your life After three attempts and beating that dragon's butt down for GOOD, you deserve ALL the sweet grapes of life you can handle -- and then some. Way to go willem! You two have fun tonight! and at breakfast, and at lunch, and at .......... lol. In a message dated 6/15/2004 1:31:42 PM Eastern Standard Time, lands142@... writes: > HI guys and dolls.Here I.am and reading your post everyday but for the > second time in my life I.am in love which somebody much younger and it saps all > my energy.It.s a impossible relation denounced by almost every good upright > citizen but it.s the happiest time I had for a long time and those who denounce > me can go to hell.I.am not throwing any bombs or torturing prisoners > ,fornicating children or fill my pockets which tax-payers money.I.am making > love,Tatezi has to wait,sorry gal.Yes I had three tX and the third one hits home.Two > which the old treatment and the third one with Peg-interferon.I feel > wonderfull because of the elixer of love but also I feel that I hve finally beaten > the dragon.So go for it if your system can take it.Love to all of you Willem > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 younger than YOU? Tell me it ain't true! What, does that mean we'e talking about someone from a previous life? haha just kidding I'm happy for you Willem. Life is to live. Do it. Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 ... Remember that doctors promote whichever drug they are getting kickbacks from...don't ever completely trust doctors. I didn't start having platelet or low WBC counts until the last 6ish weeks of treatment. Find out if you have a county, state or city public health system. If you do, use them. Plan on spending a day there and take something to drink and reading materials. It's a hastle to go through the initial process (took me 4 trips and spending the day there) but you will be eligible. Then you can get your prescriptions free. Use the system! That's why it's there. Tatezi Re: migraines and sleep and stuff Hi Tatezi. So you've been through both, huh? Wow! I was very disappointed when my first GI doc told me he only used PegIntron and Ribavirin (as I had heard that Pegasys was " better " because it stayed at a more consistent level the entire week (didn't peeter out). When I asked him about this, he commented (something to effect ) " they are both are tit for tat and one is not better than the other " . When I found out I would have to absorb 20% of what Medicare did not cover under his care, I had to seek another GI doc and was relieved to know that -- under his care -- I qualified for the Pegasys and Copegus (which was what I wanted to treat with anyway). Even he said, though, that both were about the same when push came to shove. These statements by both these GI docs made me wonder about their expertise (as I had heard so many good things about Pegasys in comparison to PegIntron). According to what I've seen on the internet, though, Pegasys is " better " , and so I'm glad -- if I do decide to treat, that I will be on Peg/Cop (I qualify under Roche for the patient assistance and can at least get these two drugs at no cost to me). Any side effect medications, though, such as Neupogen, Procrit, etc. I will have to absorb myself, which uh...... I'll have to depend on my family to help (they have said they will indeed help in this regard). I would rather be able to find a rogram to help cover the cost of those VERY expensive drugs, but this Medicare I've got covers NO drugs. Currently, I have to pay out of pocket for all prescription drugs (other than Peg/Cop). Currently, I only take Toprol and Valium, which aren't all that expensive, but -- when one starts getting into drugs like Neuopen and Procrit, it can be enormously expensive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Willem, How wonderful...and I'll wait for you <g> Tatezi Re: migraines and sleep and stuff HI guys and dolls.Here I.am and reading your post everyday but for the second time in my life I.am in love which somebody much younger and it saps all my energy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 <<Even he said, though, that both were about the same when push came to shove. >> They are. You can't believe everything you read. If one drug is established as one thing, the second drug has to be established as something else, new and improved. So of course they are going to say they stay in the body longer, better tolerated, etc. Gotta read between the lines as they say. <<Any side effect medications, though, such as Neupogen, Procrit, etc. I will have to absorb myself>> My whole 48 weeks on treatment, none of my labs went out of spec. Some do, some don't. Not a lot of people have to use those drugs. Let us know what you decide! Alley Quote Link to comment Share on other sites More sharing options...
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