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| kabbala1 7/22/2004 | . | Hi, Im pretty sure I contracted Hep C around 1985 and was diagnosed about 1999.At that point in 1999 my vial load was 300,000 my AST and ALT levels were slightly elevated 65-90. My AST and ALT levels have never gone much higher then that right up to this day. I Took interferon for 1 yr. Viral load went undetectable levels for about 6 months. Had a biopsy, no signs of fibrosis,with very mild inflamation.A months later viral load was back. Then in 2001 I tried the Peglylated recombinant alpha interferon combined with holistic meds and proper diet where I once again failed treatment. Two years ago I tried the interferon and combined Rebetron. I stayed on it for 9 months, and it was very difficult to go that long. After 9 months my viral load was at 280,000. Dr felt I shouldnt suffer any longer and took me off because if it wasnt undetectable by then , it probally wasnt going to go below undetectable levels.So now its been about a year and 1/2 since I was involved in any therapy.I eat a good diet, dont drink alcohol, smoke 1/2 pack a day. I take prescribed pain meds, oxycontin and vicodin in moderation. Well , last week I had a biopsy. Its been almost 4 years since my last one. Dr says Im at grade 3 level 1 ? Of course, my Dr is on vactaion until 9/10, and no one else at the office would or could talk to me about it.It seems to me that there is a very fast paced problem with my liver if it went to no fibrosis to level 1 in almost 4 yrs, do you agree? Oh yea, my viral load is up to the 2 million mark. Well Im outta characters. Any help from readers or Docters appreciated |
| stan1 7/23/2004 C2 | kabbala1 | first of all, there aren't any doctors (that i'm aware of) who make comments on this board -- the vast majority of us are patients just like you. biopsy results are "scored" in different ways -- many hospitals use "knodell's score," while others "grade" the inflammation on a score of 0 through 4 (0 means none, 4 is pronounced) and "stage" the fibrosis on a scale of 0 through 4 (0 means none, 4 is extensive). it's possible that you are a "3" on the inflammation scale (you said he used the term "grade" in connection with the "3" figure) but only a "1" on the fibrosis "scale" indicating very mild scarring. the doctor used the term "level" instead of "stage" though, so the best thing to do is request a copy of the biopsy report from your hospital's medical records department. don't worry too much about being a "3" as far as inflammation goes, that won't always lead to more scarring anytime soon -- the important thing appears to be that you are only a "1" on the fibrosis scale -- very mild scarring. good luck stan |
| kabbala1 7/23/2004 C3 | Thanks 4 the replys keepum comin | Thanks 4 the replys keepum comin, Yea, I know I said DR? I thought there was Dr on this site. Which means what? I get more honest info from my partners such as you. Yes 3 is the inflamation and 1 is the fibrosis stage. Im a little bugged about this whole liver gig. My father passed in my arms at the age of 50 from cirrosis so it hits me and my family close to home. Peace to you all and I appreciate any help, and I mean ANY in regards to support and treatment both western and alternative. |
| cuteus 7/23/2004 C4 | kabbala | it looks like you are reading the posts in the forum. continue to do so, did you also check the other sites mentioned here: janis7hepc.com and the hepatitisdoctor.com, in the latter one, Dr cecil is customizing tx for the hard to treat. when you said you cleared for 6 months were those months during tx? how long did you treat? There are some here trying new combo of meds, also check mkandrew.com, miles' site. he is trying a new combo of meds and posting blogs online. There is a section in Medhelp where you can ask a dr questions, for a fee. best to you |
| kabbala1 7/24/2004 C5 | cuteus, I was on treatments this long | cuteus, I was on treatments this long. interferon alone, 1 yr , went to undetectable levels for 6 months peg interferon 1 yr, went to undetectable levels for 2 months peg + rebetron 9 months, and levels were still 280,000 , Thanks 4 your response and support and links |
| hippiemom 7/26/2004 C6 | kabbala 1 | Do not do anymore biopsies. This is very dangerous to your liver at your stage and is also unneccessary for treatment purposes. In december 2003, pegasys came out of clinical trial. Treatment is way different now than 2 years ago. You are entitled to try again. The HCV virus is hardy and stubborn, in types 1a, 2, it almost always requires more than one round of treatment. Pegasys has little or no side effects and the medication is as effect at i/2 doses for 48 weeks as it is for whole doses at 24 weeks. If you know your genotype and viral load, go see a specialist and insist that youwant treatment, and please turn down any requests for biopsies. It is okay to say no. |
| cuteus 7/26/2004 C7 | hippie/kabbala | "Pegasys has little or no side effects and the medication is as effect at i/2 doses for 48 weeks as it is for whole doses at 24 weeks." What studies support that statement? genotype 1 has a 50% chance of achieving Svr the first time. The Teravic-4 study does not support your statement and neither does the other studies I have read. Kabbala: use the suggestions we give you here as a guideline of what to research further, we are not HCV experts, not even drs are...go to the sites on HCV reasearch that publish the studies, read them, and armed yourself for your next move, hcvadvocate.org is a good site for studies. The biopsy tells the level of damage and it will prove most useful since many drs are now extending tx and prescribing maintenance doses to reverse its damage. Not knowing the amount of damage in your liver can work against your cure, but don't take our word for it, read the studies... |
| hippiemom 7/27/2004 C8 | cuteus | If you are on tx from pegasys, read your medication insert, if not, check out the website. IAM ANHCV SPECIALIST/TESTER/TRAINER/COUNSELOR certified by the CDC and the State Office of AIDS. I know my facts and keep up with current info. Genotype matters because HCV is a hardy virus, and the strongest of all is type 1. It may take a second round to cure this nasty bugger, but it can be done. The faster you enter treatment working with an HCV specialist, the better the chances. I know patients who have cleared 1a, 1b, during their fourth round of tx, but they cleared it. Genotype 3 seems to react the quickest to tx. |
| cuteus 7/27/2004 C9 | . | This particular report does not support the statement that a lower dose is as effective as a higher dose in genotype one. http://www.hcvadvocate.org/news/reports/howell.html |
| cuteus 7/27/2004 C10 | . | In achieving SVR, I should say, not just clearing the virus while on the meds. Please show me the reports that back the lower dose, I want the easier way to treat HCV, and am open to the new effective ways to achieve a cure. Ty for your input and be well. |
| hippiemom 7/27/2004 C11 | cuteus | Have you reseached the HCV ADVOCATE on the web? They are a good source of not only clinical info, but also clinical trials of new meds, such as ISIS that is being researched, in particular, for individuals that have failed treatment with genotype 1a, 1b. I also have many websites avaiable at my agency for you to explore which might help you. I will bring my book home tomorrow night and type in all the sights for eveyone to use. | [Thread closed to new comments] |
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