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Medical Forum / Diseases and Disorders / Hepatitis / March 2007Starting treatment tomorrow
Hi everyone, Many of you already know my story through posts over the years from my mom. Everyone has been very helpful to her and I figured that since I am starting treatment tomorrow it is a good time for me to join too. For those who don't know...I found out that I had hep c about 5 years ago, but couldn't stay sober long enough to do anything about it until now. June will be three years of sobriety and what a wonderful few years they have been. The birth of my daughter was the best gift of all. She is the most important thing in the world to me and I want to make sure that I am the best mom that I can be. To me that means taking care of myself and insuring that I will be around a long time. I am ready to give this my best shot (no pun intended). Starting tomorrow I will be doing 24 weeks of combo therapy. One of my biggest fears is that I won't be able to give my 6 month old daughter the attention that she deserves. I know in the long run this is what is best, but she still needs me now. But I know, as well as those of you that know my mom probably know, that she will be here as much as possible to help out. My boyfriend is also a huge support. The nurse told me to drink tons of water today and tomorrow to lessen the flu like symptoms. Does anyone else have any advice they can give me before I start tomorrow? Thanks....Katie >Hi everyone, >Many of you already know my story through posts over the years from my [quoted text clipped - 19 lines] > >Thanks....Katie Hi Katie. Welcome to our little corner of the world. Kudos for making the decision to do therapy now and not put it off. Don't worry too much about the potential side effects and impact of therapy on your loved ones. You might get away with very light sides, your family will be right there supporting you, your Mom's a smart cookie, and you're doing 24 weeks instead of the 48 and it'll be over before you know it :-) A 500mg Tylenol taken an hour or so before your first shot will help ease you through the potential "flu" symptoms you may experience a few hours later for the first few shots. It doesn't happen to everyone, but for those who have been there, it can be quite profound, so best to take the Tylenol just in case, and get used to having - and using - a bottle of water at bedside for the next 6 months. Otherwise, be sure to take your Ribavirin with some kind of high-fat food, every time for at least the first 16 weeks. Fat boosts the absorption of Ribavirin by up to 70%, a good thing if you want to help tilt the odds in your favor. Lastly: Seems to me I recall you got both a G2 and a G1 on your genotype test results. Did that conflict ever get resolved? Cheers /greyhackles > >Hi everyone, > >Many of you already know my story through posts over the years from my [quoted text clipped - 48 lines] > > - Show quoted text - Thanks for the advice. When I was tested 5 years ago I was told that I was G1. When i was just tested again it came G3. I ask the doctor about it and he seemed to think that it isn't possible to have both. He ask other doctors in the office for their opinions and only one said that it was possible. Anyway, after going round and round they said they would only treat me for what they were shown that I had recently. Maybe I sould have kept fighting but I just decided to go along with what they were saying and do the 24 weeks. >> >Hi everyone, >> >Many of you already know my story through posts over the years from my [quoted text clipped - 67 lines] > recently. Maybe I sould have kept fighting but I just decided to go > along with what they were saying and do the 24 weeks. This is a problem. If you have G1, the 24 weeks most likely won't kill it. The good thing is that you have 24 weeks to have it figured out and an informed decision made, and one doc in the office confirms that it's possible to have more than one geno. The treatment for G1, except for the duration, is identical to that for G3. A tip: when presenting your case to your doctor, don't say, "I read on the internet," but rather provide him with printouts from reputable medical sources. I'm sure you'll get lots of good links here to just what you need to have your tx extended. > >> >Hi everyone, > >> >Many of you already know my story through posts over the years from my [quoted text clipped - 79 lines] > > - Show quoted text - Thanks to everyone for the great feedback! My mom is right you guys are great. The doctor seemed to think that I could have had G1, gotten rid of it somehow and then became reinfected with G3???? Sounds a little strange to me. He also said that if I did have both that they would both have shown on the test they did. I am going to approach them about it again armed with more info. I guess part of me didn't want to push it too much because 24 weeks sounded better than 48. But I want this to work so I am willing to do whatever it takes. Thanks again to everyone who replied.............Katie Hi Katie one more article then I will shut up. Don't try to read the whole thing, it's impossible. The last sentence is the kicker. As best I can tell, the technical research term for having more than one genotype is "mixed genotypes." Your lab test results could be wrong. Who knows what those lab technicians are thinking when they do their thing (!). It is reasonable to ask for another HCV PCR test because you have received conflicting results. Spidey is right you have time to sort this out because the beginning treatment is the same for all genotypes. Btw, early in tx I made the mistake of getting crabby with my doctor. I eventually learned to be very polite. Kathy J Comparison and application of a novel genotyping method, semiautomated primer-specific and mispair extension analysis, and four other genotyping assays for detection of hepatitis C virus mixed-genotype infections. Hu YW et al J Clin Microbiol. 2000 Aug;38(8):2807-13 To date the true prevalence of hepatitis C virus (HCV) mixed-genotype infections has not been established mainly because currently available methods are not suitable for the detection of mixed genotypes in a viral population. A novel semiautomated genotyping method, primer-specific and mispair extension analysis (S-PSMEA), which is more reliable than other genotyping assays was developed for detection of HCV mixed-genotype infections. A genotype present at levels as low as 0.8% in a defined mix of HCV genotypes was detected, showing a 20-fold increase in sensitivity over that of direct DNA sequencing. A total of 434 HCV isolates were genotyped and analyzed for a comparative study of the accuracy between S-PSMEA and four current genotyping methods. The results showed that viruses in approximately 40% of the samples from this group determined to be infected with mixed genotypes by S-PSMEA were undetected by direct DNA sequencing due to its low sensitivity. Type-specific PCR, line probe assay, and restriction fragment length polymorphism analysis performed poorly, being able to identify only 38.5, 16.1, and 15.4% of mixed-genotype infections, respectively, that were detected by direct DNA sequencing. The prevalence of mixed-genotype infections detected by S-PSMEA was 7.9% (12 of 152 donors) among HCV-infected blood donors, 14.3% (15 of 105) among patients with chronic hepatitis C, and 17.1% (6 of 36) among thalassemia patients who had received multiple transfusions. The data lead us to conclude that HCV mixed-genotype infections are more common than previously estimated and that S-PSMEA may be the method of choice when detection of genotypes present at low levels in mixed-genotype infections is required due to its higher level of sensitivity. Hepatitis C virus (HCV) is an RNA virus with a high rate of genetic mutation. As a result, extensive genetic heterogeneity of HCV exists in infected individuals, and HCV isolates are found as either a group of isolates with very closely related genomes, referred to as quasispecies, or genetically distinct groups called "genotypes." At present, 11 types and at least 50 subtypes of HCV have been described. MORE THAN ONE GENOTYPE CAN BE FOUND IN SOME HCV-INFECTED INDIVIDUALS WHO HAVE RECEIVED MULTIPLE TRANSFUSIONS AND INTRAVENOUS DRUG USERS. Wow. Hello. Mother daughter and grandaughter: three generations in ash-c! I didn't really start feeling bad until about 4 weeks into tx. Then I began to require support meds, which you may already know about. Lots of info here. I suggest you make a nest for your self and your daughter in the living room. Lots of pillows and blankets, so you can be together in the same room as much as possible. Welcome. We already know you are a good kid :-) What is your little pooper's name? Kathy J kj Koko kjoh and other assorted worse names > Wow. Hello. Mother daughter and grandaughter: three generations in > ash-c! [quoted text clipped - 13 lines] > kjoh > and other assorted worse names Thanks, I like the nest idea. Her name is Sydney Marie Hi again Katie. This isn't great news, but I think it is possible to be infected with more than one genotype. Your doctor might not like to be proven wrong, but if you print out these summaries and show them to him, it might convince him. The articles are not news articles. They were written by HCV researchers and are available from www.pubmed.gov The articles are hard to read. Scan down throught them and just look for the sentences in capital letters. It is very important to your treatment if you have genotype 1. You probably know already. Kathy J. Comparison of hepatitis C viral loads in patients with or without coinfection with different genotypes. Schijman A, et al Clin Diagn Lab Immunol. 2004 Mar;11(2):433-5 Hepatitis C virus genotyping was assessed for 257 chronic hepatitis C patients with viral loads above 1,000 IU/ml. TWELVE PATIENTS WERE COINFECTED WITH MORE THAN ONE GENOTYPE. Their median viral loads did not differ significantly from those observed for monoinfected patients, which in turn did not vary significantly among different genotypes. Distribution frequency of hepatitis C virus genotypes in 2231 patients in Iran.Keyvani H, Alizadeh AH et al Hepatol Res. 2007 Feb;37(2):101-3. Aim: Given the importance of frequency distribution of HCV genotypes, we studied genotypic distribution of HCV in Iran. In this cross-sectional study, 2231 patients with hepatitis C who presented in hepatitis clinics in Tehran were investigated for HCV genotypes. Methods: Genotyping was performed by genotype specific primers. Results: The highest frequency was for genotype 1a, with 886 (39.7%) of subjects. Genotype 3a and 1b were the other frequent genotypes, with 613 (27.5%) and 271 (12.1%) subjects, respectively. Of the samples, 401 (18%) had an undetermined genotype. MIXED GENOTYPES WERE FOUND IN 33 SAMPLES (1.6%). Genotype 1b frequency in patients under 20 years old was 10.2%, while its frequency in patients over 60 years old was 18.5%. Genotype 1b frequency significantly increased by age (P = 0.02). Conclusion: This study indicates that the dominant HCV genotype among patients living in Tehran was 1a. Hepatitis C virus coinfection and superinfection. Blackard JT, Sherman KE. J Infect Dis. 2007 Feb 15;195(4):519-24 A hallmark of RNA viruses is their extreme genetic diversity. Within an individual, the hepatitis C virus (HCV) exists as a population of distinct but closely related viral variants, termed the "viral quasispecies." These variants may display divergent replicative capacity, cell tropism, immunologic escape, and antiviral-drug resistance. COINFECTION WITH 2 OR MORE DISTINCT HCV'S HAS BEEN FREQUENTLY DOCUMENTED. Moreover, several cases of HCV superinfection have been reported recently. However, few data are available regarding the clinical consequences of coinfection and superinfection, although these phenomena have important implications for HCV vaccine design and development, as well as for the efficacy of HCV therapeutic agents. Chronic hepatitis C virus infection: is there a correlation between HCV genotypes and the level of viremia? Delic D, et al Med Pregl. 2006 May-Jun;59(5-6):230-4 Introduction: Hepatitis C virus (HCV) RNA status and HCV genotypes have become extremely important for exact diagnosis, prognosis, duration of treatment and monitoring of antiviral therapy of chronic HCV infection. Materials and Methods: For the purpose of precise and objective assessment of virologic analyses, such as the determination of the number of virus copies and virus genotypes, 110 patients with chronic HCV infection were tested Genotyping of HCV isolates and HCV RNA quantification were performed by using the PCR method. Genotype 1b infection was verified in 49.1% of patients, genotype 3a infection was found in 28.2%, genotype 4 in 9.1%, genotype 2 in 4.5%, while MIXED GENOTYPE INFECTIONS WERE DIAGNOSED IN 9.1% Results: Patients infected by genotype 1b had significantly higher serum HCV RNA level in relation to patients infected by other genotypes (p < 0.05). Over 70% of patients infected by genotype 1b had more than 2 x 10(6) virus copies in 1 ml of blood, while in genotypes 2, 3a and 4, the percentage was 40%, 38.5% and 30%, respectively. Male patients had approximately 7.7 x 10(6) virus copies in 1 ml of blood, which was significantly higher in comparison with female patients (2.3 x 10(6) copies/ml; p < 0.05). CONCLUSION: Our results are in concordance with the results of other authors reporting that genotype 1b is predominant in Europe, as well as significantly higher incidence of viremia in patients with genotype 1b infection in relation to other HCV genotypes. Based on these results, we can conclude that our patients, most commonly, present with severe clinical course of chronic HCV infection and require longer treatment (48 weeks), which causes economic problems. > Hi everyone, > [...] Does anyone else have any advice they can give > me before I start tomorrow? > > Thanks....Katie Hi Katie, nice to see you posting finally! I am 33 and I started treatment (48 weeks) in October 2004. At the time, my son was just 18 month "old" so I think I've been going through something similar to what you are going to face now. Undergoing treatment _contributed_ to some things that happened between me and my partner... It hasn't been a good period both for me and her and it has, with no doubt, left a sign upon our relationship. But this was not the case for my son. I've managed to take care of him and help him, even play with him throughout the whole year, in the same way I used to do before. Of course I was much more weak and tired than I did before, mostly after 7-8-9 months of treatment, but I could do it just by "moving slower" as Gordo used to say. One thing I remember was the puffing and panting when, every morning, I had to carry him to the car and then to the nursery or when I had to change the nappy and then wash him. Bottom line: it seems that you love your daughter _a lot_ and that you have _great_ support at home. These things, together with the short duration, should limit and mitigate treatment side effects so that you and your family will not suffer from it. Do your best at it and good luck. Cheers, jeeb. > Hi everyone, > Many of you already know my story through posts over the years from my [quoted text clipped - 19 lines] > > Thanks....Katie Hi Katie, Welcome to the group. I like what KJ suggested about the nest with you and your daughter. I think this is great, while she is not a toddler and she's just probably able to hold her bottle by herself, having you close will give her the attention she needs. My only suggestion that hasn't been given yet is taking your shot after dinner or about 3-4 hours before the babies bedtime. I found this to work well for me but you might find it doesn't work for you. Drinking water all the time will help with the sides, but you will get tired of getting up to wee, but slack off on the water and you will feel worse, at least I do. I am on my second round at 22-23 weeks of treatment and was clear at week 18, I should finish the first week of November just in time for my 51st B day. Take one day at a time, and know you are doing this to be healthy again. You already have the best mom in the world who knows so much about what we go through on treatment and it will help you through treatment. eileen > Hi everyone, > Many of you already know my story through posts over the years from my [quoted text clipped - 18 lines] > me before I start tomorrow? > Thanks....Katie KATIE!!! ((((big welcome hugs)))) Hi kid, and welcome to the Friday Night Shooters Club, and to ash-c. Many of us here feel like we already know you, and it's so nice to see you here. I'm one of the old-timers, so I know what you've been through on your way (more than one of us has been down that same path). You've got my total respect and admiration for that-- you're one gutsy, strong and determined lady. Wow. I wonder if you're as terrified as I was. I thought the shot might kill me-- seriously, I had no idea what to expect. Anyway, it didn't, but I have to tell you that my first shot was the worst. Keep in mind though, some people have barely noticable sides. Really. Anyway, my philosophy on the thing was, expect the worst and then anything else is a bonus. Your nurse is right about water, although I'm not sure that it lessens the sides so much as counteracts the dehydration caused by the treatment. I'd do my shot about midnight to ensure that I was ready to go to sleep, theory being that, if I was going to feel like crap, why be wide awake to enjoy it? I tried to do it no later than midnight, out of respect to the Friday Night Shooters Club. Not good to be late for a meeting. About an hour before you do your shot, take a Tylenol and a Gravol. That way you'll sleep through the worst of it, combat any possible nausea and lessen any achyness (sp?). Of course, you're young and healthy so you may not have any noticable sides, but why invite them to be worse than they have to be? When you take the Tylenol and Gravol, take the interferon out of the fridge... if it's cold, it has a bit of a sting. Take the Riba with food, preferably on the fatty side. Yes, ice cream is food. That will facilitate its absorption into your system. The rest of the time, make sure you're eating a balanced diet. Unless you end up with anemia, try to get some light, fresh-air exercise daily. The better you take care of your body through this, the better you'll feel. If you're not yet taking anti-depressants, talk to your doctor. Depression is a serious side effect that seems to hit everyone and, because the anti-ds take a while to begin doing their thing, it's best to start taking them before you need them. Oh yeah.... and drink lots of water <g> We're here for you to answer any questions or just to listen, a time-honoured tradition in ash-c. Know that many of us are exactly where you are today, and that we were helped greatly by those who were around when we showed up. It is an honour to have the opportunity to pass it on. Oh yeah, about the questions... the only stupid ones are the ones you don't ask. Waterspider > Hi everyone, > Many of you already know my story through posts over the years from my [quoted text clipped - 19 lines] > > Thanks....Katie Don't go into this thinking that the treatment is always very debilitating, it doesn't have to be. I am in week 31 of 48 and I have had very little in the way of side effects. I have had a rash , a few headaches and I'm a little tired sometimes, but that's it so far. I haven't missed any work, I haven't had to stop doing the things that I enjoy and no one I haven't told about this even realizes that anything is going on. Drink lots of water and have a positive outlook. Take care > Hi everyone, > Many of you already know my story through posts over the years from my [quoted text clipped - 19 lines] > > Thanks....Katie Katie, glad you finally joined us. I've been proud of you for several years now, as if I known you personally. You have a lot of people here that will be cheering you on. I wish you the best of luck. I'm sure Mom will be there if/when you need her. Dwight On 22 Mar 2007 08:44:10 -0700, "Daughter" <katiemarie2030@yahoo.com>, >Hi everyone, >Many of you already know my story through posts over the years from my [quoted text clipped - 19 lines] > >Thanks....Katie Welcome at last Katie. I did a 24 week tx in '04 for genotype 2b and it was succesful. Here's hoping yours is succesful too. I do feel a little uneasy about the conflicting genotype reports that you have had. If it was my body (and it isn't), I would be inclined to have a third test at a different place just for peace of mind but it's your call. My tx was pretty unpleasant at times but doable. I suppose my side effects were about average - i.e. pretty unpleasant but within what I expected. I hope that yours are tolerable too. Best wishes from the other side of the Atlantic. I'm glad you've left tx till you've got a bit of recovery time behind you. Tx can mess with the head enough without the added burden of being very early in recovery. Clean and sober over 20 years these days but, as they say, the cleanest person is the one who got up earliest :-) . It was weird sticking needles in myself again after so long but hey-ho, I guess that's just consequences. Keep posting and stick around won't you? This is a great bunch of people (even when they get the arse ache with each other) :-) . > On 22 Mar 2007 08:44:10 -0700, "Daughter" <katiemarie2030@yahoo.com>, > [quoted text clipped - 43 lines] > Keep posting and stick around won't you? This is a great bunch of > people (even when they get the arse ache with each other) :-) . Katie, Good to see you here. I know this is going to be a tremendous support system for you during the coming months. These folks have become my family over the years and you are in excellent hands. I feel so much better knowing that support, advice, and experience are only a keyboard away for you. They will help you make sense of things that don't make any sense to you. With my physical love and support and there virtual love and support you can't lose. I love you so much and couldn't be prouder of you! Thank you all for being here for Katie. Mom Hi Katie! I can't add anything to what's already been said other than I think more attention to the question of multiple genotypes needs to be paid. It'd sure be a shame for you to go thru 24 weeks of tx only to relapse because you weren't on the meds long enough. You've come a long way since I met you nearly 3 years ago. I'm really proud of the way you've turned your life around. Ooops, I do have one suggestion for you.....whenever you're injecting a med that's been in the fridge...let it warm up a bit before injecting it. One way to get it warm is to put the syringe in the palm of your hand, then take your other hand and roll the syringe back and forth for a minute or so. Warming the stuff up will take most of the sting out of injecting it. Hope your first shot goes well and that you get yourself comfy in your living room 'nest' of pillows, blankets and what not. :-) Sydney's a beautiful little girl....a chip off the ole block...just like you. elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum >Hi everyone, >The nurse told me to drink tons of water today and tomorrow to lessen >the flu like symptoms. Does anyone else have any advice they can give >me before I start tomorrow? > >Thanks....Katie Hi Katie, good luck with your treatment. One thing though is I have to strongly agree with those suggesting you get the genotype thing worked out ASAP. One thing I found out while I was undergoing treatment was that doctor not specializing in Hep C could be incredibly ignorant about the disease. I would want to get it resolved and make sure Genotype 1 is not there. Infection with more than one genotype is well documented see http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1 0402061&dopt=Abstract "In this study we determined the effective prevalence of coinfections by two or more HCV genotypes in 213 subjects with HCV-positive chronic hepatitis... A mixed infection was detected in 23 patients (10.8%): 4 out of 23 were coinfected by types 1a + 1b, while the remaining 19 patients had a b + 2 (a/c) mixed infection. I would be a disaster to do a 24 week treatment if G1 was present. All that effort and it would likely fail. Even 24 weeks isn't easy so it is no small thing. Go somewhere else if necessary to get a second opinion. It sounds to me like your doctors don't know hep c and .is not good. I would need assurance and really wonder about that first diagnosis. Hep C is very tricky and labs do make mistakes. Don't let it go there is too much at stake. Ok, other than drinking lots of water I made sure I always took the riba with a meal containing some fat. What worked for me was peanut butter and jelly on toast with a banana and washed down with regular milk not the nonfat. Not much of a hassle to prepare and I usually didn't feel like eating much anyways but you want to make sure the riba absorption is good. Also, make sure you are rotating where you inject good and giving any injection site reactions a rest before hitting that area again. Know in advance that you may become irritable and/or depressed during treatment and make sure others around you understand. Be focused on your mission. You have a dragon to slay and it's not easy. I'm so glad to hear you got things worked out and are ontrack with your life and I'm rooting for you. Hope you are soon a member of the Dragon Slayer's Club also. Don |
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