Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 CREE8V1 Thamks for the reply, until I got on this net - I never heard of AIH. I never even heard of it spoken at Veterans Hospital GI clinics. Now I understand a little more about AIH. Between bouts with cancer & Hep - my world has revolved around getting, keeping, and boosting my immune system. I can't even imagine - what you guys are going through - but I'm starting to see. I know each dx has different protocols, even though it seems that we are getting the same tests - but for totally different outcomes. Thanks! I'm getting an education today. Rocco [ ] Hep C > From: CREE8V1@... > > Rocco, HCV and AIH have entirely different dx's and treatments. AIH is a non > viral, non infectious disease caused by our immune systems gone haywire and > attacking the liver. HCV, as you know is a virus attacking the liver. While > your treatment involves trying to boost the immune system to fight the virus, > our treatment involves suppressing our immune systems to stop the attacking. > Hope this helps. > > ------------------------------------------------------------------------ > How has ONElist changed your life? > > Share your story with us at > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to -subscribeonelist > 2.) To UNsubscribe send to -unsubscribeonelist > 3.) Digest e-mail format send to -digestonelist > 4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Hello, Not everyone has the side effects of the treatment. I know many who have been able to continue working and one guy played on two softball teams. Usually, the first night, or maybe week or two may be the worse...it depends on the individual person. I had very few sides and aspirin or a 'tylenol cold medicene' took care of what little aches, etc. I got. One of the keys is to drink lots and lots of water. Most people find it easier to inject the interferon in the evening and then sleep off the sides if they have any. Have you had a biopsy, genotype and PCR done? The biopsy will determine exactly what and how much damage has been done; the genotype will tell what kind of Hep C you have (some types are easier to treat than others) and the PCR will tell you how much of the virus you have, or your 'viral load'. If you've not had these done, I would insist to your doc that you have them before you even think of starting treatment. Also, unfortunately, younger people usually respond to treatment better than those over 40-45 (based on studies I believe). So if you don't have a lot of damage to your liver, and if your viral load is not extremely high, you might want to consider checking into the 'alternatives'. That would be the supplements and/or vitamins that are liver friendly. Many have had success in keeping the viral count down using this method and usually feel better also. Have you checked out the Hepatitis Central web site? There is lots and lots of wonderful information there. It's only my personal opinion, but I wouldn't rush into the treatment combo. There are other possible therapy's out there, but also none of them can offer a cure for this disease. The " Peg " treatment may be released later this year and it shows a lot of promise and I understand the sides from it are easier to tolerate. Good luck, Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Hi Kim: Yes, I had the same thing while I was on combo for 48 week. First my advice to you is to try and stick it out, try using a good boy lotion like Vaseline Intensive Care or Gold-BOM lotion, when you shower don't use any soap if you have to use soap use Dove. Drink a lot of water DRINK A LOT OF WATER! and STAY out of the sun. Good luck, Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Hi Kim: Yes, I had the same thing while I was on combo for 48 week. First my advice to you is to try and stick it out, try using a good boy lotion like Vaseline Intensive Care or Gold-BOM lotion, when you shower don't use any soap if you have to use soap use Dove. Drink a lot of water DRINK A LOT OF WATER! and STAY out of the sun. Good luck, Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Kim what levels are normal? PCR is negative? alley/ ICQ 12631861 alleypat@... http://micromagic.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Kim what levels are normal? PCR is negative? alley/ ICQ 12631861 alleypat@... http://micromagic.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2000 Report Share Posted November 21, 2000 It isn't a big deal except that people recognize their names and, rightly or wrongly, hep c becomes of interest to the masses. Most people live in their own little world, we can't help it, I'm just as guilty as anyone else. Sometimes a " famous " name will touch their world where a nobody name won't. Thanks for passing it along alley/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2000 Report Share Posted November 21, 2000 It isn't a big deal except that people recognize their names and, rightly or wrongly, hep c becomes of interest to the masses. Most people live in their own little world, we can't help it, I'm just as guilty as anyone else. Sometimes a " famous " name will touch their world where a nobody name won't. Thanks for passing it along alley/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Go to a real doctor first, read everything that you can and make informed decisions on your treatment. Not saying alternative treatments do not work but this is your life. I know people who have died from this disease take it very seriously. If you are drinking, smoking or doing anything else to hurt yourself STOP now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi kfreqer, read everything carefully both the pros and cons of any medication you take or thinking of taking only you know whats good for you. I ve heard and read that coll. silver is malarkey. read about Milk thistle, Thymus, Colostrum, N A C , Sam-e,and AHCC among other things. When I had active Hep C I took the conventional treatment along with a host of herbal items and was virus free in 6 mos and still virus free after 3 years this was good for me but as I said only you know whats good for you. Good luck and remember only make informed decisions about your care so read, read, and read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi, Lili, see our group page main menu, files section, disease research results, hepatitis. It's important to use the device both on the bloodstream on the wrist or ankles arteries, and also on the liver itself. Best of Luck, bG > > Has anyone had any good results with This treatment and hepc> > > Lili > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Hi...My name is Debbie, I found out last June that I have hep c. I had my liver biopsy in August . My Dr. says I have minimal liver damage and is not recomending treatment at this time as I am for the most part asymptomatic, so he will do another biopsy in 5 yrs.with the hope for better drugs with less side effects. I've had hepc for approximately 28 yrs. I got it from my ex. from sharing needles...little did I know that many years later and drugs behind me, that this would be my burden to bare for being stupid and ignorant. Hepatitis C From: heaven_scent_in_55@... Date: Thu, 26 Mar 2009 13:26:08 +0000 Subject: hep c just found out a month ago that i have hep c. if its from an only tattoo i recieved,that would be 13 yrs ago,im 53 now.i found out just recently that the guy that tattooed me actually has hep c himself.i myself havent seen him in 13 yrs and yes its water under the bridge i have been to the liver doc and he said my viral load was 244,000,he checked me for outter signs and said i look good. he made an appointment for me to have a liver bi. and i canceled it 24 hrs before i was to go in. i guess im just not ready for this and ive made up my mind that im not doing treatment,i know i would never be able to hack those drugs they are using,i have depression now that im doing well keeping at bay without meds.i relize that i have to do the biopsy in order for the doc to get an idea where my liver sits with damage...i will do the biopsy,i just need time to obsorb this news first.i heard that genotype 1 is popular in the u.s. ok,i was wondering,if you have type 1 is it more dangerous to the liver and is type 2/and 3 better to have than 1 ? i know treatment is less time with type 2 but im wondering if its better to have type2/3 if your not doing treatment? hope i didnt confuse you anyhow im wondering if theres anyone else out there that has had hep c for a long time and NOT doing treatment? i wonder how long a person can live with hep c and not do the treatment...thanks alot...deb here _________________________________________________________________ Internet Explorer 8 – Get your Hotmail Accelerated. Download free! http://clk.atdmt.com/MRT/go/141323790/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Just some food for thought on having HCV for many years.... I had HCV for many years and was also without symptoms. When I would have blood tests done over the years, I always had elevated liver levels. I was told many times that I should consider treatment. I always blew it off. When I was 53, I became disabled. I was literally falling down and was using a walker to get around. I had also previously been diagnosed with rheumatoid arthritis a couple of years earlier. After seeing a lot of specialists and having a ton of tests, I learned that I had cryoglobulenemia as a result of HCV. The cryo can lead to disabling illnesses such as RA and neuropathy. Make a long story short......I believe that had I treated the HCV years earlier, I may have prevented these disabling problems. I did treat the HCV and have been undetectable now for over a year since finishing treatment. I'll never know for sure, but I wish I had done it a long time ago. In fact, about 5 or 6 years earlier, my husband and I saw a specialist who said perhaps we could wait for a better treatment.....that didn't happen.....and 5 or 6 years later, I did the same old interferon treatment that was available earlier. Only by then, I had become ill enough to qualify for SSDI. I hope that a better treatment will happen, but don't count on it. Do what you need to do to insure a healthy future life. Just my personal opinion based on personal experience..... Dorothy RE: hep c Hi...My name is Debbie, I found out last June that I have hep c. I had my liver biopsy in August . My Dr. says I have minimal liver damage and is not recomending treatment at this time as I am for the most part asymptomatic, so he will do another biopsy in 5 yrs.with the hope for better drugs with less side effects. I've had hepc for approximately 28 yrs. I got it from my ex. from sharing needles...little did I know that many years later and drugs behind me, that this would be my burden to bare for being stupid and ignorant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 > > just found out a month ago that i have hep c. if its from an only tattoo i recieved,that would be 13 yrs ago,im 53 now.i found out just recently that the guy that tattooed me actually has hep c himself.i myself havent seen him in 13 yrs and yes its water under the bridge > > i have been to the liver doc and he said my viral load was 244,000,he checked me for outter signs and said i look good. he made an appointment for me to have a liver bi. and i canceled it 24 hrs before i was to go in. i guess im just not ready for this and ive made up my mind that im not doing treatment,i know i would never be able to hack those drugs they are using,i have depression now that im doing well keeping at bay without meds.i relize that i have to do the biopsy in order for the doc to get an idea where my liver sits with damage...i will do the biopsy,i just need time to obsorb this news first.i heard that genotype 1 is popular in the u.s. ok,i was wondering,if you have type 1 is it more dangerous to the liver and is type 2/and 3 better to have than 1 ? i know treatment is less time with type 2 but im wondering if its better to have type2/3 if your not doing treatment? hope i didnt confuse you anyhow im wondering if theres anyone else out there that has had hep c for a long time and NOT doing treatment? i wonder how long a person can live with hep c and not do the treatment...thanks alot...deb here > I have had hep-c for 30 years now. I had a liver transplant and still my hep-c came back. I tried the treatments and found out that I am allergic to them. I am doing okay right now, it has been 7 years since my transplant. I really didn't think too much about anything, I just did what needed to be done. I had tree kids, all grown but looking forward to grandkids. The depression can be bad, but once I got off their depression drugs I did better. I don't know if your married but it helps if you have someone close to talk to. You can talk to me if you like. It doesn't matter about any of the other heps if are hep-c 1. Concentrate on what you need to do for yourself. Take care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Hi I have had Hep C for 16 years,don't know for how long before that.Found out when donating blood.No problems as of yet.Then the thinking was a ten year life,now newer info. says 4 out 5 people never have a problem.I have checks once a year and nothing else done. Hope all goes well with you! Hepatitis C From: brenda1554@... Date: Thu, 26 Mar 2009 23:03:45 +0000 Subject: Re: hep c > > just found out a month ago that i have hep c. if its from an only tattoo i recieved,that would be 13 yrs ago,im 53 now.i found out just recently that the guy that tattooed me actually has hep c himself.i myself havent seen him in 13 yrs and yes its water under the bridge > > i have been to the liver doc and he said my viral load was 244,000,he checked me for outter signs and said i look good. he made an appointment for me to have a liver bi. and i canceled it 24 hrs before i was to go in. i guess im just not ready for this and ive made up my mind that im not doing treatment,i know i would never be able to hack those drugs they are using,i have depression now that im doing well keeping at bay without meds.i relize that i have to do the biopsy in order for the doc to get an idea where my liver sits with damage...i will do the biopsy,i just need time to obsorb this news first.i heard that genotype 1 is popular in the u.s. ok,i was wondering,if you have type 1 is it more dangerous to the liver and is type 2/and 3 better to have than 1 ? i know treatment is less time with type 2 but im wondering if its better to have type2/3 if your not doing treatment? hope i didnt confuse you anyhow im wondering if theres anyone else out there that has had hep c for a long time and NOT doing treatment? i wonder how long a person can live with hep c and not do the treatment...thanks alot...deb here > I have had hep-c for 30 years now. I had a liver transplant and still my hep-c came back. I tried the treatments and found out that I am allergic to them. I am doing okay right now, it has been 7 years since my transplant. I really didn't think too much about anything, I just did what needed to be done. I had tree kids, all grown but looking forward to grandkids. The depression can be bad, but once I got off their depression drugs I did better. I don't know if your married but it helps if you have someone close to talk to. You can talk to me if you like. It doesn't matter about any of the other heps if are hep-c 1. Concentrate on what you need to do for yourself. Take care _________________________________________________________________ Windows Live™ SkyDrive: Get 25 GB of free online storage. http://windowslive.com/online/skydrive?ocid=TXT_TAGLM_WL_skydrive_032009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 > > > > just found out a month ago that i have hep c. if its from an only tattoo i recieved,that would be 13 yrs ago,im 53 now.i found out just recently that the guy that tattooed me actually has hep c himself.i myself havent seen him in 13 yrs and yes its water under the bridge > > > > i have been to the liver doc and he said my viral load was 244,000,he checked me for outter signs and said i look good. he made an appointment for me to have a liver bi. and i canceled it 24 hrs before i was to go in. i guess im just not ready for this and ive made up my mind that im not doing treatment,i know i would never be able to hack those drugs they are using,i have depression now that im doing well keeping at bay without meds.i relize that i have to do the biopsy in order for the doc to get an idea where my liver sits with damage...i will do the biopsy,i just need time to obsorb this news first.i heard that genotype 1 is popular in the u.s. ok,i was wondering,if you have type 1 is it more dangerous to the liver and is type 2/and 3 better to have than 1 ? i know treatment is less time with type 2 but im wondering if its better to have type2/3 if your not doing treatment? hope i didnt confuse you anyhow im wondering if theres anyone else out there that has had hep c for a long time and NOT doing treatment? i wonder how long a person can live with hep c and not do the treatment...thanks alot...deb here > > > I have had hep-c for 30 years now. I had a liver transplant and still my hep-c came back. I tried the treatments and found out that I am allergic to them. I am doing okay right now, it has been 7 years since my transplant. I really didn't think too much about anything, I just did what needed to be done. I had tree kids, all grown but looking forward to grandkids. The depression can be bad, but once I got off their depression drugs I did better. I don't know if your married but it helps if you have someone close to talk to. You can talk to me if you like. It doesn't matter about any of the other heps if are hep-c 1. Concentrate on what you need to do for yourself. Take care > Ive had hep -c over 25 yrs and am starting to wonder were im at with it because i get worn out and feel bet sometimes i had the biopsy 5 yrs ago and blood work last yr and result came back good and i wonder if its all the stess from my job thats beating me down or the hep-c or being 50 or both ? I get depressed but have two great kids that need me and have to to keep going there only 10 and 12 so i need to make it at least 15 more years. GOD bless alex Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 alex,its probably stress/work/age, those things combined.are you getting at least 8 hrs of sleep, its most important because our bodies do most of its healing in a rem sleep. i use to work third shift so i also know that its a fact that your body heals itself during sleep.while searching about sleep disorders i found that the body heals better sleeping in a " very dark " room,so ive got dark curtains up in my bedroom. i just started drinking grapefruit juice,its said that it may help hep c,try that,but dont take pills with in an hr of drinking grapefruit.its good for ya and maybe you need the extra c...im sure its the long hrs you put in everyday,im 53 and if i can i get a nap in,even if its 30 minutes,i only work parttime so i'm not pressured for really long days.are you taking milk thistle? did you do the treatment? if not are you going to? From: gonzalezalex19 <gonzalezalex19@...> Subject: Re: hep c Hepatitis C Date: Friday, March 27, 2009, 3:27 AM > > > > just found out a month ago that i have hep c. if its from an only tattoo i recieved,that would be 13 yrs ago,im 53 now.i found out just recently that the guy that tattooed me actually has hep c himself.i myself havent seen him in 13 yrs and yes its water under the bridge > > > > i have been to the liver doc and he said my viral load was 244,000,he checked me for outter signs and said i look good. he made an appointment for me to have a liver bi. and i canceled it 24 hrs before i was to go in. i guess im just not ready for this and ive made up my mind that im not doing treatment,i know i would never be able to hack those drugs they are using,i have depression now that im doing well keeping at bay without meds.i relize that i have to do the biopsy in order for the doc to get an idea where my liver sits with damage...i will do the biopsy,i just need time to obsorb this news first.i heard that genotype 1 is popular in the u.s. ok,i was wondering,if you have type 1 is it more dangerous to the liver and is type 2/and 3 better to have than 1 ? i know treatment is less time with type 2 but im wondering if its better to have type2/3 if your not doing treatment? hope i didnt confuse you anyhow im wondering if theres anyone else out there that has had hep c for a long time and NOT doing treatment? i wonder how long a person can live with hep c and not do the treatment... thanks alot...deb here > > > I have had hep-c for 30 years now. I had a liver transplant and still my hep-c came back. I tried the treatments and found out that I am allergic to them. I am doing okay right now, it has been 7 years since my transplant. I really didn't think too much about anything, I just did what needed to be done. I had tree kids, all grown but looking forward to grandkids. The depression can be bad, but once I got off their depression drugs I did better. I don't know if your married but it helps if you have someone close to talk to. You can talk to me if you like. It doesn't matter about any of the other heps if are hep-c 1. Concentrate on what you need to do for yourself. Take care > Ive had hep -c over 25 yrs and am starting to wonder were im at with it because i get worn out and feel bet sometimes i had the biopsy 5 yrs ago and blood work last yr and result came back good and i wonder if its all the stess from my job thats beating me down or the hep-c or being 50 or both ? I get depressed but have two great kids that need me and have to to keep going there only 10 and 12 so i need to make it at least 15 more years. GOD bless alex Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Hepatitis C Support Group - Up-to-Date Information about Hepatitis CDorothy, DId doing the interferon/ribavarin treatment get rid of your neuropathy? Were you dizzy or feeling unbalanced from the neuropathy? (Before treatment I mean.) Thanks, Jackie Dorothy writes <<<Just some food for thought on having HCV for many years.... I had HCV for many years and was also without symptoms. When I would have blood tests done over the years, I always had elevated liver levels. I was told many times that I should consider treatment. I always blew it off. When I was 53, I became disabled. I was literally falling down and was using a walker to get around. I had also previously been diagnosed with rheumatoid arthritis a couple of years earlier. After seeing a lot of specialists and having a ton of tests, I learned that I had cryoglobulenemia as a result of HCV. The cryo can lead to disabling illnesses such as RA and neuropathy. Make a long story short......I believe that had I treated the HCV years earlier, I may have prevented these disabling problems. I did treat the HCV and have been undetectable now for over a year since finishing treatment. I'll never know for sure, but I wish I had done it a long time ago. In fact, about 5 or 6 years earlier, my husband and I saw a specialist who said perhaps we could wait for a better treatment.....that didn't happen.....and 5 or 6 years later, I did the same old interferon treatment that was available earlier. Only by then, I had become ill enough to qualify for SSDI. I hope that a better treatment will happen, but don't count on it. Do what you need to do to insure a healthy future life. Just my personal opinion based on personal experience..... Dorothy>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Sorry for the late reply, but I'm just catching up! No, the hep tx did not cure the neuropathy or the RA. There was some hope that it would help, but I'm at 14 months since ending tx and no luck. Honestly, that's really the only reason I did the tx - oh, I also developed eye problems and my gastro wouldn't let me start on interferon till the ophthalmologists cleared me. I'm still being treated for glaucoma. I don't recall feeling dizzy, but you could certainly say I was unbalanced. I would fall down! Most of my leg was numb with unreal sensations like electric shocks. I was using a walker and with physical therapy, progressed to a cane. I no longer use a cane, but I sometimes sort of lean to one side when walking. I qualified for social security disability on the first try without even having to appeal! That is amazing since few people get approved on application. Are you experiencing dizziness? Why do you ask that? I promise I won't wait over a week to reply :-) _____ From: Hepatitis C [mailto:Hepatitis C ] On Behalf Of Jackie Levin Sent: Friday, March 27, 2009 1:36 PM Hepatitis C Subject: Re: Hep C Hepatitis C Support Group - Up-to-Date Information about Hepatitis CDorothy, DId doing the interferon/ribavarin treatment get rid of your neuropathy? Were you dizzy or feeling unbalanced from the neuropathy? (Before treatment I mean.) Thanks, Jackie Dorothy writes <<<Just some food for thought on having HCV for many years.... I had HCV for many years and was also without symptoms. When I would have blood tests done over the years, I always had elevated liver levels. I was told many times that I should consider treatment. I always blew it off. When I was 53, I became disabled. I was literally falling down and was using a walker to get around. I had also previously been diagnosed with rheumatoid arthritis a couple of years earlier. After seeing a lot of specialists and having a ton of tests, I learned that I had cryoglobulenemia as a result of HCV. The cryo can lead to disabling illnesses such as RA and neuropathy. Make a long story short......I believe that had I treated the HCV years earlier, I may have prevented these disabling problems. I did treat the HCV and have been undetectable now for over a year since finishing treatment. I'll never know for sure, but I wish I had done it a long time ago. In fact, about 5 or 6 years earlier, my husband and I saw a specialist who said perhaps we could wait for a better treatment.....that didn't happen.....and 5 or 6 years later, I did the same old interferon treatment that was available earlier. Only by then, I had become ill enough to qualify for SSDI. I hope that a better treatment will happen, but don't count on it. Do what you need to do to insure a healthy future life. Just my personal opinion based on personal experience..... Dorothy>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Sorry for the late reply, but I'm just catching up! No, the hep tx did not cure the neuropathy or the RA. There was some hope that it would help, but I'm at 14 months since ending tx and no luck. Honestly, that's really the only reason I did the tx - oh, I also developed eye problems and my gastro wouldn't let me start on interferon till the ophthalmologists cleared me. I'm still being treated for glaucoma. I don't recall feeling dizzy, but you could certainly say I was unbalanced. I would fall down! Most of my leg was numb with unreal sensations like electric shocks. I was using a walker and with physical therapy, progressed to a cane. I no longer use a cane, but I sometimes sort of lean to one side when walking. I qualified for social security disability on the first try without even having to appeal! That is amazing since few people get approved on application. Are you experiencing dizziness? Why do you ask that? I promise I won't wait over a week to reply :-) _____ From: Hepatitis C [mailto:Hepatitis C ] On Behalf Of Jackie Levin Sent: Friday, March 27, 2009 1:36 PM Hepatitis C Subject: Re: Hep C Hepatitis C Support Group - Up-to-Date Information about Hepatitis CDorothy, DId doing the interferon/ribavarin treatment get rid of your neuropathy? Were you dizzy or feeling unbalanced from the neuropathy? (Before treatment I mean.) Thanks, Jackie Dorothy writes <<<Just some food for thought on having HCV for many years.... I had HCV for many years and was also without symptoms. When I would have blood tests done over the years, I always had elevated liver levels. I was told many times that I should consider treatment. I always blew it off. When I was 53, I became disabled. I was literally falling down and was using a walker to get around. I had also previously been diagnosed with rheumatoid arthritis a couple of years earlier. After seeing a lot of specialists and having a ton of tests, I learned that I had cryoglobulenemia as a result of HCV. The cryo can lead to disabling illnesses such as RA and neuropathy. Make a long story short......I believe that had I treated the HCV years earlier, I may have prevented these disabling problems. I did treat the HCV and have been undetectable now for over a year since finishing treatment. I'll never know for sure, but I wish I had done it a long time ago. In fact, about 5 or 6 years earlier, my husband and I saw a specialist who said perhaps we could wait for a better treatment.....that didn't happen.....and 5 or 6 years later, I did the same old interferon treatment that was available earlier. Only by then, I had become ill enough to qualify for SSDI. I hope that a better treatment will happen, but don't count on it. Do what you need to do to insure a healthy future life. Just my personal opinion based on personal experience..... Dorothy>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Hi Terry Here is some info for you. Procrit - http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=procrit%20medication & type= epogen - http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=epogen%20information & type= neupogen - http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=neupogen%20side%20effects & type= I am not a doctor or an expert, but it sounds like you are doing something wrong. Drug interactions??? You shouldnt be having high fevers, ending up in the hospital, having to have transfusions, or losing 70 pounds in just a few months. I would go consult another doctor, and get a second opinion. Nice doctors doesnt mean good doctors. You drop in VL is good news. Your being so sick is not. I have a doctor appmt myself in a few minutes. I will try to find more info for you later when I get back. Check out our groups links section. http://health.dir./group/ /links folder - 009 Anti-biotics and meds [drug interactions] http://health.dir./group/ /links/antibiotics_and_HCV_001253422622/ Others here might be able to answer your questions better. Talk to you in a bit. love don in ks From: martinez_a_terry <martinez_a_terry@...>Subject: [ ] hep c Date: Friday, September 25, 2009, 6:21 AM On feb 20,2009 i started interferon and rebetol, my viral load was in the billions............ Now just about 7 months later my viral load is 0 ,yes 0 and the doctor wants me to continue until march 2010, i'm also on procrit 3x wk,Epogen40,000 2x wk and Neupogen 300 micrograms 2x wk, also been hospitalized for very high fevers and blood transfusions is this normal procedure ? also have lost48 lbs in these 7 months, do i need to stay on treatment, i really like this doctor but, i feel like its killing me not to mention the fianiacial burden and i don't qualify foe unemployment or disability, Any advice, Thanks so much TERRY------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 > > On feb 20,2009 i started interferon and rebetol, my viral load was in the billions............ Now just about 7 months later my viral load is 0 ,yes 0 and the doctor wants me to continue until march 2010, i'm also on procrit 3x wk,Epogen40,000 2x wk and Neupogen 300 micrograms 2x wk, also been hospitalized for very high fevers and blood transfusions is this normal procedure ? also have lost48 lbs in these 7 months, do i need to stay on treatment, i really like this doctor but, i feel like its killing me not to mention the fianiacial burden and i don't qualify foe unemployment or disability, > Any advice, > Thanks so much > TERRY > 1st I would say " find out how much expierence your doctor has in treatment of Hep c, if he has the expierence then by all means follow his advice! if he does not have that much expierence, then get a 2nd or even a 3rd apion. I have found alot of doctors has no or not enough expierence to render the advice that they are giving! (Not to say that they are not good doctors) But lets face it " money plays into everything! Including " life and death decisions " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 > > On feb 20,2009 i started interferon and rebetol, my viral load was in the billions............ Now just about 7 months later my viral load is 0 ,yes 0 and the doctor wants me to continue until march 2010, i'm also on procrit 3x wk,Epogen40,000 2x wk and Neupogen 300 micrograms 2x wk, also been hospitalized for very high fevers and blood transfusions is this normal procedure ? also have lost48 lbs in these 7 months, do i need to stay on treatment, i really like this doctor but, i feel like its killing me not to mention the fianiacial burden and i don't qualify foe unemployment or disability, > Any advice, > Thanks so much > TERRY > 1st I would say " find out how much expierence your doctor has in treatment of Hep c, if he has the expierence then by all means follow his advice! if he does not have that much expierence, then get a 2nd or even a 3rd apion. I have found alot of doctors has no or not enough expierence to render the advice that they are giving! (Not to say that they are not good doctors) But lets face it " money plays into everything! Including " life and death decisions " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Hi Terry Procrit [Epoetin alfa], Epogen [Epoetin alfa], and Neupogen [Filgrastim] are all heavy duty drugs, with lots of warnings about use. I only scanned the first 2-3 links for each of these 3 drugs, and they raise serious questions about use, side effects, and use with Chemo TX [interferon/rebetol]. - Have you looked at the 3 links on these drugs that I gave you? - If yes, do you understand what you are reading? - Why are you taking these drugs 'AND' interferon/rebetol for HCV? - Is the same doctor who is treating you for HCV, also treating you with these drugs? - Do you have cancer? Other serious illnesses? - What is your genotype for HCV? - What type of interferon are you taking? [alpha-2a injection, alpha-2b injection, Alfacon-1 injection, Beta-1a injection, Beta-1b injection, etc] Here are two links to check for drug interactions. http://www.drugs.com/drug_interactions.html http://www.drugdigest.org/wps/portal/ddigest I repeat, I am not a doctor. I am trying to help you find information only. love don in ks From: martinez_a_terry <martinez_a_terry@...>Subject: [ ] hep c Date: Friday, September 25, 2009, 6:21 AM On feb 20,2009 i started interferon and rebetol, my viral load was in the billions............ Now just about 7 months later my viral load is 0 ,yes 0 and the doctor wants me to continue until march 2010, i'm also on procrit 3x wk,Epogen40,000 2x wk and Neupogen 300 micrograms 2x wk, also been hospitalized for very high fevers and blood transfusions is this normal procedure ? also have lost48 lbs in these 7 months, do i need to stay on treatment, i really like this doctor but, i feel like its killing me not to mention the fianiacial burden and i don't qualify foe unemployment or disability, Any advice, Thanks so much TERRY------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 TerryI'm about the same amount of time into my 2nd treatment with the clinical trial on the new trio. I should be starting my 33rd week tonight but my Interferon is a little held up and I won't get it till tomorrow. Just a warning, this is the toughest part of the course - this later end seems so long and drawn out. Truthfully, I too have been having a struggle mostly because I'm just sick and tired of being sick and tired!!Also, I could only wish that I had lost 48 lbs - oh, would I be in 7th heaven, instead I get hair loss. However, that much weight loss is very severe and I certainly would hope that your specialist is watching that very closely.Yesterday I was speaking to a young friend that is battling a blood cancer and gawd only knows what other type. I could tell that he'd lost his hair; but it was a wakeup call for me when he took his cap off. All I could say to him was - WOW - two weeks ago you still had hair... Yup he says and then one morning I woke up and none of my hair came with me. A friend was making some kind of voodoo doll for him, so that when the pain gets really bad, he stick pins into his doll. I'll never complain again about the little bit of hair I've lost and especially knowing already that it comes back.Now, from experience, I gotta try to encourage you to keep going on the meds!!! I too, was paying out of pocket for my first treatment and it ended up driving us into bankruptcy, so I know about the costs to some degree except I'm in Canada and our drugs are probably cheaper than in the States. However, I was encouraged enough to keep going with that one except that I began missing the Ribavirin occasionally. I'd been viral load 0 since about the 3rd month. Well, no one will ever know for sure but, at some point after that 3rd month the virus changed itself they think and at the end - I was a Non-Responder.This time around, my husband ensures that I have my pills just about precisely on time every day. I don't get to know what the scores are regarding my viral load on this clinical; but, have to believe that I've been a 0 since third month or they wouldn't allow me to stay on the trial. If the virus had replicated itself this time, then I wouldn't be allowed to stay on the trial. So for me, even as tough as it's getting, I have to believe that it's working and that I'll be virus free next Feb.Besides, a lot of folk here are looking forward to that too, so that perhaps they can skip the duo and go right for the trio as it's sounding like it will be available next summer.At at rate, Terry, we are all here for you and will be supportive of any decision you make. My personal e-mail address is gadamscan@... if you ever need to talk - you could even get me on MSN faster as I work in front of my puter most days and then play or do e-mails in the evening.Gloria On feb 20,2009 i started interferon and rebetol, my viral load was in the billions.... ........ Now just about 7 months later my viral load is 0 ,yes 0 and the doctor wants me to continue until march 2010, i'm also on procrit 3x wk,Epogen40, 000 2x wk and Neupogen 300 micrograms 2x wk, also been hospitalized for very high fevers and blood transfusions is this normal procedure ? also have lost48 lbs in these 7 months, do i need to stay on treatment, i really like this doctor but, i feel like its killing me not to mention the fianiacial burden and i don't qualify foe unemployment or disability, Any advice, Thanks so much TERRY Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
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