Just wondering if anyone else is starting this soon and would like to go through it together. I am genotype 3a and will be doing the six month treatment, any advice from anyone would be greastly apprciated
thanks

Hi Karica ! I dont have any words of wisdom or anything like that for you. I just found out Im pos on the 11th of this month. Prayers and more prayers to/ for you ! ....Can I ask what made you decide to start this ? How long have you known that you have had it ? Have you been feeling bad ??...So many questions , I appologize. I have no one here to talk to about this. What constitutes a type 3a ? I havent heard of that one. Just the 1 and 2.

Hope you dont mind the questions and hope youre feeling great today !

Hey sunshine, I found out I was postiive when I was 17, I am now 25, I have two sons and I think that if the treatment prolongs my life then it is going to benifit all of us. I know that genotype 3a is not the most common, I dont know how they determine the type though. I have not been feeling bad, just tired easlily, so anyways what about yourself are you consideriung treatment??
Kara

No...I wouldnt have even known had I not had a blood test for pre employment...Im on pain pills ( methadone and hydrocodone) for pain management so they make me sleepy...Ive never been sick , really, growing up , I mean...Never got the cold that everyone else at school had or whatever...SO Ive always been healthy. I used to drink beer like a daily fish but just quit because I was tired of it. It was like Id open one just because it was there. So I quit a few months ago ( good now, I guess)....So the blood institue called me to tell me about my status on the 11th. Im jobless, hence no insurance , so Im not going to the doc til I do. I had the riba test done, they said, to confirm. And my alt is normal, 31 (?) . Have you read anything about lloyd wright ? I posted about him. What do you think about that ? What all have you done ? I mean, the herbs and all ? Changed your diet ? Im taking milk thistle and drinking green tea. Heard its supposed to be really good for you. The caffein in the green tea makes me nauseated tho......So how are you doing mentally ? I dont even think about it , hardly...well, Im trying not to..that way I wont let myself become comsumed with it ! Its nuce to have you to talk to. I have NO ONE here. My mother wont talk about it and I havent told but 1 other person and we dont speak that much. So its nice to talk to you . Altho its ****** the way we have to meet....please keep in contact with me !...What happens when you start this ? You get a shot the first day or what ?

sunshiney

karica.. hi i,am a geno type 1a. iam starting treatment on thrusday june 8th.which one are you doing? i,am doing peg-interon.i found out i had hep c in feb and the doctors offered treatment right away.i,am really nervous also.i,ll be on treatment for 48 weeks.yuck!! looks like we,ll be in this together.stay in touch and good luck!! clily

Hi Karica,

Genotype is only a grouping of genetically related viruses--it was not known for a long time whether the separate types made much difference, but it has turned out to be so. type 1a, as most of us know by now, is considered the most resistant to interferon tx, and is unfotunately also the most common in america. types 2a and 2b are usually considered the most treatable, and the other types (3 and 4, usually) somewhere between. I'm sorry to say that type 3 is the most closely linked to steatosis (fatty liver) and fibrosis.

In addition to whatever else you are doing along with treatment, or to prepare for tx, getting in good shape is a major factor in preventing liver damage in the first place, recovering from liver damage in the second, or in response to treatment. The research seems very clear that trimming down is a key aspect of preventing bad liver damage from hcv, or in showing a good response to treatment among those who treat. this latter turns out to be especially true for genotype 3.

So, eat your veggies, take your silymarin, run or walk like crazy! From what I've read, it seems most of what would be recommended for good heart health is identical to what benefits the liver. So we can prevent the killing of two birds with one stone....er, or something like that.
goodluck

sean

Karicia,
I'd like to know are you actually sick right now? You are so young. If you are not sick, let me tell you. I have had Hep C since I was in my early twenties. Today I am 60. Never treated because there is still too much unknown science about Hep C. I am well. No liver damage. I eat well, sleep when I am sleepy, and do not drink alcohol. I take herbs, detoxes like Milk thistle and Q-10, Nu-live etc. I have taken herbs for years. If you are not sick, I would think twice about treatment. It is poisin to the immune system just like cemo. At such a young age, the last thing you want to do is destroy your immune system which is probably quite strong given your age. I think you can beat this thing if you actually have Hep C with herbs and good living. Remember, doctors and science now assume one has Hep C from 5 elevated enzymes. There are many things that can elevate the enzymes, different causes for different people, like alcohol, cigarette, too much coffee, or another virus in the blood, like Cytomegalovirus, which a doctor cannot diagnose without taking a series of blood tests two weeks apart. The doctor must know your original blood count and form of cells. What I am saying is...there are unknown agents of viruses that will elevate your enzymes and an agents that are not yet diagnosable. When this happens, unknowing doctors assume you have Hep C. So if you are well, please don't treat. Take it from an old timer. I have done a lot of research on Hep C and from the information writen at a well known research foundation in California, writen by those who study the progression of cases diagnosed as Hep C. I am sure some will disagree with me, but the fact is most simply hang onto hope to be cured. Personally, I really don't think about having Hep C, and I go about my life and I livea normal life and feel well. Yes, I often feel fatigue, but Heck, I am 60 years old. I am not expected to feel 20.Hope this information helps. I am sure doctors will argue, but I have done my research. There is nothing a doctor could tell me to incite treatment. There not the ones that will suffer. If you doctor is really :nono: informed, he will not advise treatment.

Hi again K,

I don't understand torry's points about enzyme tests--i think every doc and patient gets a true RNA test now to be sure we are dealing with live, active hep viruses before venturing into treatment questions. the fact that you know your genotype tells me you have had this test.

but, that said, I agree with much of what t. has written here. unless you are actively sick, or have had a biopsy indicating liver fibrosis at stage 2 or worse, there is NO reason to assume treatment is the appropriate choice for you.
I repeat, NO reason to assume this.

Can you tell us a bit more, like why your doc thinks you need to treat? having the virus is NOT a reason. hard to believe? well like torrie, I am 60, have had the virus for what we think (doing our backwards forensic work) must have been 40 years--certainly for more than the 15 or 20 years since my first 'non-a, non'b" hep test results). I've had 2 biopsies, and while they, and my enzyme levels, get a little worse over time, neither the biopises nor any symptoms or other tests would suggest i need tx.

I am considering tx anyway, after all these years, cause I have little kids (again), and I have grown scared of my own blood and the risks to them--even though I already have raised several kids without any transmission. we'll see--i'm seeing the hep doc again this summer some time, and i'll make a decision then.

Point being, we all have our reasons to treat or not treat, but there is no 'mandate' one way or the other. interferon is a difficult tx for many, risky for any of us, and the decision to go that way should be made after careful, unhurried consideration. hep c is certainly not in a hurry. it must be the slowest virus infection on earth, in fact, or seems like it. so take your time, figure it out.

sean

I am genotype 1a and started my treatment on June 8th as well. Have been desperately ill until this past week and am finally keeping some food in my system. I tried to quit about two weeks ago, but was able to hang in and stay positive. I lost ten pounds the first two weeks. I don't know what is happening next, but am always maintaining a positive focus and that helps.

I am genotype 1a and started my treatment on June 8th as well. Have been desperately ill until this past week and am finally keeping some food in my system. I tried to quit about two weeks ago, but was able to hang in and stay positive. I lost ten pounds the first two weeks. I don't know what is happening next, but am always maintaining a positive focus and that helps.

the very best to you frosty. we'll all be pulling for you.
small consolation, maybe the weight loss will turn out to be good for you!

peace,
sean

hi :wave:

i learned i had Hep C 3a when i donated blood -- went to the dr and the count was really low -- 2500 -- did a biopsy and that was ok -- went back in 2 years and my count was more than 4,000,000 -- started on Rebetol and Peg-Intron --started the meds on 3/06 -- thought i was going to DIE after that first shot!!! my husband has been an angel thru all this -- i now have 9 shots left -- many many times i thought about giving it up -- after the first 6 weeks i came to realize that i had to take a medical leave -- i go back to work on tuesday -- due to insurance/job issues -- i've been sooooo tired due to the anemia -- i've lost weight (which is a wonderful thing) -- i can't walk to the bathroom without being out of breath--saturdays i still lay in bed all day and just try to stay comfortable -- sweats!!! oh my god!!! and i can't get cool!!! food, YUCK - foggy head (is that new??) -- time feels like a LONG time -- it could be 10 minutes and i'll think it's been hours!!

the good news -- the treatments are working -- as of bloodwork dated 4/28/06 my viral count was <50 -- and i'm what they call an early responder --i know in the long run this will be worth it :)

it's not an easy road -- it may be the worse medical treatments you will ever go thru -- but it's just something that has to be done -- tell your dr about any and all side effects -- restless legs, muscle aches, nausea, insomnia and everything -- don't take any side effect for granted -- you don't have to feel like crap 24/7 :)

i was not a high risk person -- i have 1 tattoo -- i have my ears pierced -- but i will always wonder if i got it from having my fingernails done all the time -- how many times did they cut the side of my finger with the sandpaper -- how many times was someone else cut??? it makes me wonder....

good luck to all :)
roberta

I have it and found out last Fall while I was away in Thailand. I have type 2. I've been healthy also and never would have known except it got to the point where I have cirrhosis and I swelled up like I was pregnant. I hadn't even had a cold in years. I am very interested to hear how everyone does with thier treatment. I just got back to the states and I have a doctor's appointment in mid-September, the first one available.

My dh was going to start on entecavir, haven't even received it from our HBO pharmacy yet, but reading all the nasty side effects, he is thinking now of doing the interferon instead. If he is going to be sick, may as well kill the darn virus instead of just lowering it. We live in a rural mountain part of Northern Calif., no support groups of any kind, have to drive over 2 hrs to a special doctor. Bummer. Unsure what to really do now.

My dh was going to start on entecavir, haven't even received it from our HBO pharmacy yet, but reading all the nasty side effects, he is thinking now of doing the interferon instead. If he is going to be sick, may as well kill the darn virus instead of just lowering it. We live in a rural mountain part of Northern Calif., no support groups of any kind, have to drive over 2 hrs to a special doctor. Bummer. Unsure what to really do now.

Hi smaller,


Your hubby has hep b if they are recommending entecavir. and they will probably be recomending it in combination with lamuvidine--at least that's the combination that shows the highest percentage response in most studies. Yes, sometimes the response is 'permanent,' whatever that means. Interferon is also sometimes used for hep b, but the results are even less encouraging than the 50/50 results for hep c. Usually ifn produces sustained responses in only about a third or fewer of hep b patients treated. The advantage, however, is that if response is achieved it is very likely to be permanent, whereas the other tx's are less certain of this.
Interferon has also sometimes been used in combination with lamuvidine, and this combo shows higher probablility of clearing the virus than either medicine alone. (It also produces more side effects, at least in some people, see below.)

As you've probably read here or elsewhere, ifn, even the modern pegylated interferons (pegasys and peg-intron) have a host of very serious side effects (for some, or perhaps most, who take it), and some of these can be permanent in the unluckiest cases. so, the decision is not a light one. I would bet, from my limited readings, that acefovir (entecavir) is less debilitating for most people than is interferon.

the nice (??!!) thing about hep b, though, is that your husband and you have a range of choices, and if one therapy creates too serious a reaction, there are a few alternatives to choose from--pick another and try again. hep c folks are not so situated, at least not yet.

hep b is also somewhat more likely to resolve on its own than is hep c (I had hep b as well as c, and the b went away untreated. not so the c.)

It is worth doing your own research, of course, but it may be that your docs are suggesting the therapy of choice for you guys, and you would only go to ifn or other tx's if this does not work out.

let us know what you find out and work out.

and, best of luck!

sean