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Medical Forum / Diseases and Disorders / Hepatitis / October 2006My story
When I was first diagnosed, there wasn't any treatment. Actually when I was first "diagnosed" in 92, there wasn't a real test or a diagnosis. There was this theory about Hep type C (they had just switched from the "non-A non-B" terminology). My alt had been high since 1972 - but would often be normal on retesting. I remember in college there was a period of a month or two where I was dead-tired. I'd be fine until 3pm, and then had to get back in bed. They tested me for mono, hep a & b, but nothing, so they sent me to the shrink. So I'd get up each day with a "positive attitude", but I'd still be back in bed from 3 to 6pm every day like clockwork. Then it slowly went away. I now figure that was when I got it. (The fact that I had messed with heroin a month earlier is also a subtle little clue, too <g>). Getting back to the 90's, they came up with a test that measured antibodies. It was positive but not conclusive. The next year my doctor said they had a DNA-amplification test based on PCR that could detect the actual virus - and I came back positive. Lucky my internist also specialized in infectious diseases and liked to stay up on the journals. But no treatment was available. I don't even remember being told not to drink at that point. But drinking began to have a weird effect on me: one of every 3 times when I had just one drink, I'd wake up with a hangover the next day like I had been banging tequila shots all night long. It wasn't worth it, so I gradually diminished and stopped just from that experience. Then they were trying interferon alone, and then came the daily combo but you couldn't have the best interferon and the best antiviral (or is ribavirin a protease inhibitor?). But the treatmeent was daily and legendarily brutal - even every doctor's eyes widened when I even mentioned trying the daily treatment. So I decided to wait. And then finally you could get Peg-inteferon (from pharmco A) and ribavirin (from pharmco B)- I seem to recall that the head of the FDA, the chief of the NIH, and the Pope had to intervene to make that happen. Then results started being released on the peg once-a-week + ribavirin, so I decided to really start deeply thinking about it. However, denial was working great for me so I decided to stick with it. <smile> And it's true that most people will die *with* hep c, not *of* it. (But not much consolation if you're in the unlucky 10%...) Then this year, I got the latest of 3 liver biopsies over a 10-year period. It came back with a diagnosis of stage 3. I asked my doc if 3 was the best or worst - hey, I'm an optimist - I was hoping that 3 was best, like 10 on a scale of 1-to-10 or 4-star movies... It's a bummer to think that I lived through the 5 years in the 70's when I didn't care if I lived or died, paid a lot of dues with interest to get my life together, moved on to have a great life, and suddenly bam - more dues to pay. Maybe the person I was way back when deserved this, but the person I have been for last 30 years does not. My parents told me back then I'd have to live a long time with the bad decisions I was making, but I didn't believe them. That kinda scares me because I have a kid with the same attitude - kid knows best. So now I just started tx... Denial, Anger, Bargaining, Depression, Acceptance: I've moved through the stage of denial (14 years) and just starting the stage of anger - I hope the anger lasts 48 weeks because I need the energy ! <g> > When I was first diagnosed, there wasn't any treatment. > [quoted text clipped - 69 lines] > the stage of denial (14 years) and just starting the stage of anger - I > hope the anger lasts 48 weeks because I need the energy ! <g> Interesting story. Some of the regular posters to ash-c have a lot of info about ribavirin, but without looking through the archives or anything like that I will tell you it's not a protease inhibitor. One drug guide I have describes ribavirin as an antiviral that's topically administered to the lungs by inhalant for children infected with respiratory syncytial virus. The total dosage for this respiratory application is very small compared to the amount you now administer by mouth to load up your whole body for its fight against the dragon... Anyway, about the grieving process you speak of (denial, anger, bargaining, depression, & acceptance): I recall being taught these stages are often experienced back-and-forth rather than neatly from one stage to the next. Regression to stages already completed often occurs as various issues get sorted out. I'm seven weeks post-Tx, but the grieving process continues. It's proving difficult to get up, dust myself off, and get on with things. What a blast the past year or so has been, like being struck by lightening. Sometimes I can't tell denial from acceptance. Yesterday was one of those days. And then I met an HCV patient who is in stage 3 or 4 fibrosis and he stated the disease will just take care of itself. Accept this: I am dragon slayer. The battle before and during Tx took losses, but the outcome is true. -bg Hi Russian. I was mild stage one when I took treatment. I did ask the BCLD if I didn't clear do I treat asap. He said he probably bought me 5 to 25 yrs by treating but would not let me go past stage 3 before he treated again. Hi Burke. I am 8 weeks post tx and must say I feel better but worry about my health. I find I am anxiety ridden - perhaps from being reclusive and ill for the last 8 months and find I have some really good days, then a few bad days and worry that I will forever have brain fog! I know people such as Elmo state that it takes time to get back to your old or a newer self. Mags I know there is progress when I can climb the stairs! > > When I was first diagnosed, there wasn't any treatment. > > [quoted text clipped - 94 lines] > Accept this: I am dragon slayer. The battle before and during Tx took > losses, but the outcome is true. -bg Thanks for sharing your story. It was the daily stuff (Infergen) along with Pegasys, ribavirin and Amantadine that turned the tide for me in my third attempt. I did the 3x week shots of Intron and ribavirn in the first game, PegIntron and ribavirin in the second to no avail. Three rounds in four years. As I recall, those 3x a weekers were pretty brutal but paled in comparison to daily Infergen. My memory of those years is a little 'hazy', to say the least. :-) elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum > Thanks for sharing your story. It was the daily stuff (Infergen) along > with Pegasys, ribavirin and Amantadine that turned the tide for me in my [quoted text clipped - 4 lines] > years is a little 'hazy', to say the least. :-) > elmo If I start to feel sorry for myself, I'll refer back to your message! That's seriously inspiring. You rule. Thanks for sharing your story. Yes, alcohol had that effect on me too. So I was a fairly moderate drinker by the time I was diagnosed. I'd even given up smoking grass because I thought it was the cause of my brain fog. I found out I had hep C in 1999, about 5 days before leaving my job and country (Australia) for a new life in France. It was quite a shock but I went ahead anyway. Found a new job and thought I'd do the tx. I imagined I was going to get it all over and done with and get on with my life. I did 6 months of the 3x/wk combo. I responded well but didn't get an SVR. Should have done it for 48 weeks. Next I tried pegasys/reba. Only 3 months this time as I chickened out after my eyesight started going bad. I'm now doing Pegintron/reba for 48 weeks and have just passed the 24 week halfway point. Denial only lasted a few days with me. And I'm not the type to get angry at nothing. I don't even get riba rage. I don't see how it would help to get me through 48 weeks of tx. Patience and perseverence I think is probably the main requirement. Cheers Jack > When I was first diagnosed, there wasn't any treatment. > [quoted text clipped - 68 lines] > stage of denial (14 years) and just starting the stage of anger - I hope > the anger lasts 48 weeks because I need the energy ! <g> > Next I tried pegasys/reba. Only 3 months this >time as I chickened out after my eyesight started going bad. This is a first time for me hearing this. Does treatment affect eyesight and if so, is it temporary? Which combinations cause this and which don't? Nanci Sorry, I just want to know all your business. Nosey Nanci >> Next I tried pegasys/reba. Only 3 months this >>time as I chickened out after my eyesight started going bad. [quoted text clipped - 6 lines] >Sorry, I just want to know all your business. >Nosey Nanci It's a valid question here. There is a small chance of damage to the retinas caused by the Interferon, a good reason to have a full pre-tx eye exam, with extra care paid to retinal health, to establish a baseline. If a patient starts seeing "cotton wool" spots it would be time to see an eye doc, pronto. These issues are discussed in the Product Information Sheets accompanying interferon based drugs. I was fortunate not to experience drug-induced eye issues. However, my eyesight *did* deteriorate during the year on therapy, but considering my age neither the timing nor extent would be considered out of the ordinary - I'm just getting old ;-) Similar consideration should be given by folks in their 50s... Cheers /greyhackles Interesting Grey. I have been advised to wait 3 months and have my eyes checked. Sucks to have your eyesight deteriorate with age but then again your partner has a harder time seeing you age as well :) Mags > >> Next I tried pegasys/reba. Only 3 months this > >>time as I chickened out after my eyesight started going bad. [quoted text clipped - 26 lines] > > /greyhackles > Interesting Grey. I have been advised to wait 3 months and have my > eyes checked. Sucks to have your eyesight deteriorate with age but > then again your partner has a harder time seeing you age as well :) > > Mags That's why I married a blind girl. ... She's blind to all my faults :-) doogie Interesting Grey. I have been advised to wait 3 months and have my eyes checked. Sucks to have your eyesight deteriorate with age but then again your partner has a harder time seeing you age as well :) Mags > >> Next I tried pegasys/reba. Only 3 months this > >>time as I chickened out after my eyesight started going bad. [quoted text clipped - 26 lines] > > /greyhackles >>> Next I tried pegasys/reba. Only 3 months this >>>time as I chickened out after my eyesight started going bad. [quoted text clipped - 31 lines] > > /greyhackles I was 47 when I did tx last time and all my life I'd had excellent eyesight. Suddenly, 3 months into tx, I developed myopia (shortsightedness). At that age, presbyopia (longsightedness) is to be expected but the sudden appearance of myopia is relatively rare. There is nothing in the literature about interferon causing myopia but so many people have remarked that they experienced a loss of visual acuity during tx that I wonder still. I suspect that the myopia may be brought on by the trauma of tx nevertheless. This time I'm monitoring my eyes closely. There has been no further deterioration at this point and I'm now at week 25. I'm keeping my fingers crossed. Cheers Jack Re: My story Group: alt.support.hepatitis-c Date: Wed, Oct 25, 2006, 11:53am (CDT+7) From: jack.black@wanadoo.fr (Jack Black) "greyhackles" <greyhackles@NOSPAMyahoo.com> a écrit dans le message de news: 8c3tj25vphi0957kcr9fvf7k8t7tm0ma8a@4ax.com... On Tue, 24 Oct 2006 17:23:08 -0400, Nosey Nanci <ferrante276-noseynanci@yahoo.com> wrote: Next I tried pegasys/reba. Only 3 months this time as I chickened out after my eyesight started going bad. This is a first time for me hearing this. Does treatment affect eyesight and if so, is it temporary? Which combinations cause this and which don't? Nanci Sorry, I just want to know all your business. Nosey Nanci It's a valid question here. There is a small chance of damage to the retinas caused by the Interferon, a good reason to have a full pre-tx eye exam, with extra care paid to retinal health, to establish a baseline. If a patient starts seeing "cotton wool" spots it would be time to see an eye doc, pronto. These issues are discussed in the Product Information Sheets accompanying interferon based drugs. I was fortunate not to experience drug-induced eye issues. However, my eyesight *did* deteriorate during the year on therapy, but considering my age neither the timing nor extent would be considered out of the ordinary - I'm just getting old ;-) Similar consideration should be given by folks in their 50s... Cheers /greyhackles I was 47 when I did tx last time and all my life I'd had excellent eyesight. Suddenly, 3 months into tx, I developed myopia (shortsightedness). At that age, presbyopia (longsightedness) is to be expected but the sudden appearance of myopia is relatively rare. There is nothing in the literature about interferon causing myopia but so many people have remarked that they experienced a loss of visual acuity during tx that I wonder still. I suspect that the myopia may be brought on by the trauma of tx nevertheless. This time I'm monitoring my eyes closely. There has been no further deterioration at this point and I'm now at week 25. I'm keeping my fingers crossed. Cheers Jack /////////// The tx drugs cause temporary changes in intraocular pressure in the eyeball, resulting in changes in visual acuity. That's most likely the reason your doc wants you to wait a few months after you finish tx before you have your eyes examined for new eyeglasses and is most likely the reason your eyesight has changed. Unless you start seeing 'floaters' as mentioned previously, I wouldn't get excited over the fact that your eyesight has changed. It's temporary. elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum On Tue, 24 Oct 2006 17:23:08 -0400, Nosey Nanci <ferrante276-noseynanci@yahoo.com>, in message ID <iv0tj25gnqvk8e5e7u52k2lmqi35m0aqos@4ax.com>, in the newsgroup alt.support.hepatitis-c wrote: >This is a first time for me hearing this. Does treatment affect >eyesight and if so, is it temporary? Which combinations cause this and >which don't? Tx can damage eyesight causing retinal damage. If affected tell doctor ASAP and if doc says so, be prepared to at least suspend tx while being checked over by eye doc. My own eyesight worsened slightly during tx but was OK again after (well as OK as it was before, anyway) > On Tue, 24 Oct 2006 17:23:08 -0400, Nosey Nanci > <ferrante276-noseynanci@yahoo.com>, in message ID [quoted text clipped - 10 lines] > My own eyesight worsened slightly during tx but was OK again after > (well as OK as it was before, anyway) The first time I did the combo tx my distance vision actually improved! I was able to see clearly anything more than 2 feet away. I still needed my specs for reading. This time around I have had intermittent periods of several hours duration when I could see clearly sans specs. BCLD told me yesterday that this was only the second time he had heard of an improvement in vision while on tx. (BTW, I was also the person he heard from the first time) Has anyone else had this experience? Thom > > On Tue, 24 Oct 2006 17:23:08 -0400, Nosey Nanci > > <ferrante276-noseynanci@yahoo.com>, in message ID [quoted text clipped - 21 lines] > Has anyone else had this experience? > Thom Hi Thom, After being treated for some weird eye infection that stopped my treatment for 10 days and I wasn't allowed to wear my lenses, I resumed daily Infergen treatment at .7ml instead of the .5ml for 14 days then after treating the infection I went back to the .5ml I didn't need to wear my specs. The eye doctor just said wear them if you need them, but I was his first treatment patient and he did see my eyes as improved. My PA is pondering this. I will relay this info to him. ;) eileen went for my PCR today don't ask me what week, it's beating me to death! > > On Tue, 24 Oct 2006 17:23:08 -0400, Nosey Nanci > > <ferrante276-noseynanci@yahoo.com>, in message ID [quoted text clipped - 21 lines] > Has anyone else had this experience? > Thom Hi Thom, After being treated for some weird eye infection that stopped my treatment for 10 days and I wasn't allowed to wear my lenses, I resumed daily Infergen treatment at .7ml instead of the .5ml for 14 days then after treating the infection I went back to the .5ml I didn't need to wear my specs. The eye doctor just said wear them if you need them, but I was his first treatment patient and he did see my eyes as improved. My PA is pondering this. I will relay this info to him. ;) eileen went for my PCR today don't ask me what week, it's beating me to death! > > > On Tue, 24 Oct 2006 17:23:08 -0400, Nosey Nanci > > > <ferrante276-noseynanci@yahoo.com>, in message ID [quoted text clipped - 35 lines] > ;) eileen > went for my PCR today don't ask me what week, it's beating me to death! Very interesting... Sounds like we may be the beginning of a documented positive side affect. But I still don't think my BCLD really believes me. I don't care - it is good to navigate without eyegear. Thom > I found out I had hep C in 1999, about 5 days before leaving my job and > country (Australia) for a new life in France. It was quite a shock but I > went ahead anyway. Too weird - I got diagnosed while I was working in France and back in the US for my annual checkup, so I had a biopsy like 2 days later, got the news, and flew back to France. This was in 94. Fascinating! The "witching hour" 3pm! Me too! Ever since a transfusion a couple of weeks before my 16th birthday after a mountain climbing accident in Alaska! Hi Russian, Denial, Anger, Bargaining, Depression, Acceptance........i have it all as well.For me it was my decisions in the seventies that got me here also.Started first treatment in jan 2005.pegasys and 1200m ribavirin.meds cut in half after 16 weeks and continued for a total of 39.failed.vl never went lower then 200,000....... 2nd treatment Infergen,interferon,ribavirin and amantadine week 43.undetecable at week 12 .Finishing on Dec 15. There is hope for all of us.If this fails for me i will try something more aggressive.I will continue with treatments untill i clear forever or the insurance stops paying..................good luck slay this dragon...............john > When I was first diagnosed, there wasn't any treatment. > [quoted text clipped - 69 lines] > the stage of denial (14 years) and just starting the stage of anger - I > hope the anger lasts 48 weeks because I need the energy ! <g> If that doesn't work, John, we'll get you a flame-thrower. :-) elmo //////////////// Hi Russian, Denial, Anger, Bargaining, Depression, Acceptance........i have it all as well.For me it was my decisions in the seventies that got me here also.Started first treatment in jan 2005.pegasys and 1200m ribavirin.meds cut in half after 16 weeks and continued for a total of 39.failed.vl never went lower then 200,000....... 2nd treatment Infergen,interferon (Pegasys), ribavirin and amantadine week 43.undetecable at week 12 .Finishing on Dec 15. There is hope for all of us.If this fails for me i will try something more aggressive.I will continue with treatments untill i clear forever or the insurance stops paying..................good luck slay this dragon...............john Russian wrote: When I was first diagnosed, there wasn't any treatment. Actually when I was first "diagnosed" in 92, there wasn't a real test or a diagnosis. There was this theory about Hep type C (they had just switched from the "non-A non-B" terminology). My alt had been high since 1972 - but would often be normal on retesting. I remember in college there was a period of a month or two where I was dead-tired. I'd be fine until 3pm, and then had to get back in bed. They tested me for mono, hep a & b, but nothing, so they sent me to the shrink. So I'd get up each day with a "positive attitude", but I'd still be back in bed from 3 to 6pm every day like clockwork. Then it slowly went away. I now figure that was when I got it. (The fact that I had messed with heroin a month earlier is also a subtle little clue, too <g>). Getting back to the 90's, they came up with a test that measured antibodies. It was positive but not conclusive. The next year my doctor said they had a DNA-amplification test based on PCR that could detect the actual virus - and I came back positive. Lucky my internist also specialized in infectious diseases and liked to stay up on the journals. But no treatment was available. I don't even remember being told not to drink at that point. But drinking began to have a weird effect on me: one of every 3 times when I had just one drink, I'd wake up with a hangover the next day like I had been banging tequila shots all night long. It wasn't worth it, so I gradually diminished and stopped just from that experience. Then they were trying interferon alone, and then came the daily combo but you couldn't have the best interferon and the best antiviral (or is ribavirin a protease inhibitor?). But the treatmeent was daily and legendarily brutal - even every doctor's eyes widened when I even mentioned trying the daily treatment. So I decided to wait. And then finally you could get Peg-inteferon (from pharmco A) and ribavirin (from pharmco B)- I seem to recall that the head of the FDA, the chief of the NIH, and the Pope had to intervene to make that happen. Then results started being released on the peg once-a-week + ribavirin, so I decided to really start deeply thinking about it. However, denial was working great for me so I decided to stick with it. <smile> And it's true that most people will die *with* hep c, not *of* it. (But not much consolation if you're in the unlucky 10%...) Then this year, I got the latest of 3 liver biopsies over a 10-year period. It came back with a diagnosis of stage 3. I asked my doc if 3 was the best or worst - hey, I'm an optimist - I was hoping that 3 was best, like 10 on a scale of 1-to-10 or 4-star movies... It's a bummer to think that I lived through the 5 years in the 70's when I didn't care if I lived or died, paid a lot of dues with interest to get my life together, moved on to have a great life, and suddenly bam - more dues to pay. Maybe the person I was way back when deserved this, but the person I have been for last 30 years does not. My parents told me back then I'd have to live a long time with the bad decisions I was making, but I didn't believe them. That kinda scares me because I have a kid with the same attitude - kid knows best. So now I just started tx... Denial, Anger, Bargaining, Depression, Acceptance: I've moved through the stage of denial (14 years) and just starting the stage of anger - I hope the anger lasts 48 weeks because I need the energy ! <g> http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum |
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