Medical Forum / Diseases and Disorders / Hepatitis / September 2008
Is this a bad viral load?
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Otis T. - 16 Sep 2008 15:11 GMT I went to the doctors yesterday and he did some blood work to see what the viral load is thus far with my Hep C. It came back about 4 million. Is that considered a tremendous amount or can people go much higher?
He suggested treatment as he says I could have about a 70% chance of clearing this. Is that correct?
Once treatment begins, how it is given? Is it like one shot a week? Do you have to go into the doctors every week for it or do you get the stuff at a pharmacy or what? I am new to this.
Once treatment begins, how bad is it and what are the side effects? Also, at what point do they usually do blood work to see if the viral load is going down?
Any other info I forgot to ask would be greatly appreciated and one last question: are there any new treatments that are currently being developed that look promising over the next few years or no?
Thanks, A scared Otis.
Cactus Jammies - 16 Sep 2008 17:02 GMT Hi Otis, A lot of answers depend on which genotype the virus is. Is it 1a, 1b, 2 a or b, 3, etc.
unfortuntely you have found right place for good answers, you can look in hepatitis-central.com too.
cactus jammies
>I went to the doctors yesterday and he did some blood work to see what > the viral load is thus far with my Hep C. It came back about 4 [quoted text clipped - 18 lines] > Thanks, > A scared Otis. Otis T. - 16 Sep 2008 17:34 GMT I think I have 1a.
Otis
>Hi Otis, > A lot of answers depend on which genotype the virus is. Is it 1a, 1b, 2 a [quoted text clipped - 27 lines] >> Thanks, >> A scared Otis. Sara - 16 Sep 2008 18:06 GMT >I went to the doctors yesterday and he did some blood work to see what > the viral load is thus far with my Hep C. It came back about 4 [quoted text clipped - 18 lines] > Thanks, > A scared Otis. Hi Otis
I think 4 million is a medium/high viral reading, but it doesn't seem that bad to me, as I started out over 7 million. My viral load quickly went down once on treatment though, and by week 12 I was undetectable and stayed that way for the rest of the treatment.
Treatment is a combo of interferon and ribavirin -- one shot a week of interferon and ribavirin pills every day, how many depends on your weight usually. I took 6 a day, or 1200 mg.
With today's treatments, I think there is a good chance of clearing the virus. If you are a good responder, you'd probably be on treatment for 48 weeks. Many are now staying on the meds for 72 weeks, and that seems to be working for a lot of folks who are a little slower to respond to the meds.
There are some promising treatments in the works, but we all think they are at least a couple years in the future yet.
The current treatment plan is tough -- they are very strong meds and they definitely take their toll on your body. Luckily most of the side effects go away after you are done, and your body goes back to normal. The side effects can be brutal, but many many of us have gone there and are glad we did as we are now virus free and feel like we have a whole new lease on life -- energy, strength, and an appreciation that we didn't have before :))
My doctors worked very closely with me, helped me get through by providing the meds I needed as things progressed (anti depressent, anti anxiety meds, pain meds, meds to build up my red blood count, etc) And we are here with some practical advice to help with other side effects as needed, like reminding you to DRINK WATER, LOTS AND LOTS OF WATER! plus lotions for the itchy dry skin you'll develop, and so on.
It's doable -- and it's not as bad as cancer treatments. I'd do it again if I had to, and many of us have done it two or three times. It's a life changing experience, at least for the time you are treating the virus, but IT'S WORTH IT
good luck, and let us know what you decide to do, ok?
OH, and please, ignore people like Chardonnay and IronJustice.... we tend to draw more than our fair share of crackpots! There are NO magic cures for Hep-C, some herbal remedies help with other physical aspects caused by the disease (but be sure to do your research because there are more BAD things out there than good!) but the bottom line is that, for right now at least, only that combination of interferon and ribaviron can kill that dragon!
Sara
Otis T. - 16 Sep 2008 20:41 GMT >>I went to the doctors yesterday and he did some blood work to see what >> the viral load is thus far with my Hep C. It came back about 4 [quoted text clipped - 67 lines] > >Sara Hi Sara, Thank you so much for all your info. I really appreciate it. I am going to the doctor in a few weeks. I will keep you posted on what happens. Also, once treatment begins and this draggon is fighting for its life, hopefully a losing battle, will the liver start to repair itself or no? Also, thank you for the heads up on the crack pots within this NG. I just ignore the crap as I have done for so long. It is people like you that make it all worth while!
Thanks so much, Otis
TX-012 - 17 Sep 2008 01:03 GMT once treatment begins and this draggon is fighting for its
> life, hopefully a losing battle, will the liver start to repair itself > or no? Yes.
http://www.vicc.org/liver/treatments/regeneration.php
Sara - 17 Sep 2008 04:26 GMT >>>I went to the doctors yesterday and he did some blood work to see what >>> the viral load is thus far with my Hep C. It came back about 4 [quoted text clipped - 92 lines] > Thanks so much, > Otis Re, Otis :)
Yes, my understanding is that your liver will start healing during treatment and the battle with the dragon. I remember one dr visit during TX where the dr told mentioned something about new, pink healthy tissue growing to replace the damaged stuff, so yeah, knock the daylights out of those viral beasties and let that liver do some regenerating :)
take care, all my best to ya Sara
TX-012 - 16 Sep 2008 21:54 GMT > I went to the doctors yesterday and he did some blood work to see what > the viral load is thus far with my Hep C. It came back about 4 > million. Is that considered a tremendous amount or can people go much > higher?<< It's considered towards the higher end, but your viral load is not an indicator of either how damaged your liver is OR how well you will respond to treatment.
> He suggested treatment as he says I could have about a 70% chance of > clearing this. Is that correct?<< I imagine it probably is, but it's hard to know without a lot more information. Your statistical chance of clearing the virus varies greatly, depending on genotype ("strain" of the virus), your age, gender, race, how long you've had hep c for, whether or not you are overweight, and many other things...
> Once treatment begins, how it is given? Is it like one shot a week? Do > you have to go into the doctors every week for it or do you get the > stuff at a pharmacy or what? I am new to this.<< Most people inject themselves with a long lasting form of interferon once per week, and take an oral medication (ribavirin) twice per day. Depending on side effects, you may need to take other medications as well, but not everyone experiences sides (like significant anemia, for example) that necessitate those.
I get my interferon (Pegasys) and ribavirin (RibaPak) sent to me in a cooler box via Fed Ex once per month (the interferon needs to be refrigerated) along with two other drugs I need to inject to help me deal with anemia and neutropenia. I get other medications from local pharmacies.
> Once treatment begins, how bad is it and what are the side effects? > Also, at what point do they usually do blood work to see if the viral > load is going down?<< Typically, your first blood draw is within 2-4 weeks after you start treatment. Because some people experience severe anemia and/or neutropenia as a result of treatment, I believe most doctors prefer to do them about 2 weeks after the start of treatment---the earlier, the better...
As far as how bad treatment is...uh...
I encourage you to read as many personal accounts as possible, watch videos online, etc.
Short answer: "it varies."
I am really not sure what the "average" experience is like.
I have found treatment difficult beyond description, and my sides include anemia, neutropenia, pain, memory problems, brain fog, insomnia, depression, anxiety, etc.
> Any other info I forgot to ask would be greatly appreciated and one > last question: are there any new treatments that are currently being > developed that look promising over the next few years or no?<< Yes. There are some very promising new drugs which should be on the market within a few years. Telaprevir, for example.
topcat - 17 Sep 2008 05:21 GMT > I went to the doctors yesterday and he did some blood work to see what > the viral load is thus far with my Hep C. It came back about 4 >> A scared Otis. Otis, Welcome Aboard! I can relate to your signature; "scared". I am just over 6 months into treatment and when I found this group, I was more than scared. so stay in touch here, there's lots of good people with a wealth of knowledge, watch for posts from Grey, Sarah, Cactus and a whole lot more. As for your viral load, sounds about average, I was 6 mil. when diagnosed. That's only 1/2 the equation tho. How is your liver? did they do a biopsy? any level of scirosis? I was lucky, I had no liver damage. At week 12 of tx. my viral load was "undetectable". So, keep us posted and we'll be there for you. T.C.
Sara - 17 Sep 2008 06:37 GMT On Sep 16, 8:11 am, Otis T. <ferrante276-ot...@yahoo.com> wrote:
> I went to the doctors yesterday and he did some blood work to see what > the viral load is thus far with my Hep C. It came back about 4 >> A scared Otis. Otis, Welcome Aboard! I can relate to your signature; "scared". I am just over 6 months into treatment and when I found this group, I was more than scared. so stay in touch here, there's lots of good people with a wealth of knowledge, watch for posts from Grey, Sarah, Cactus and a whole lot more. As for your viral load, sounds about average, I was 6 mil. when diagnosed. That's only 1/2 the equation tho. How is your liver? did they do a biopsy? any level of scirosis? I was lucky, I had no liver damage. At week 12 of tx. my viral load was "undetectable". So, keep us posted and we'll be there for you. T.C.
hey tc :) how ya feelin? you 'sound' good here, hope you're feeling pretty decent! 6 months in already, unbelievable! before you know it, you're gonna be one of the 'old timers' who have killed that dragon and is giving advice to the newbies :)
Sara
topcat - 20 Sep 2008 04:39 GMT > On Sep 16, 8:11 am, Otis T. <ferrante276-ot...@yahoo.com> wrote: > [quoted text clipped - 21 lines] > > Sara Hi Sara, How are YOU doing?! I think I finally "hit my stride", my body seems to have adjusted to the routine. I finally accepted the fact that I absolutely HAVE to drink 80oz. water a day, I've cut my norco back to 1 tab every 4 hours, but only 3 per day, and eating healthy, sleep lots, avoid stress. I've managed to get some energy back, I can actually do a little physical work around the house, I've been triming bushes in the yard and even roto-tilled up a big patch of weeds in preparation for laying sod next year. Anyway, I have some life after all. I quit trying to do anti-d's none of them worked for me. anyway, nuff on me. You take care!! TC
Paul - 17 Sep 2008 23:36 GMT On Tue, 16 Sep 2008 10:11:00 -0400, Otis T. <ferrante276-otist@yahoo.com>, in message ID <a9fvc41mrh8js5j58pmn5jo92l7m1ehfen@4ax.com>, in the newsgroup alt.support.hepatitis-c wrote:
>I went to the doctors yesterday and he did some blood work to see what >the viral load is thus far with my Hep C. It came back about 4 [quoted text clipped - 18 lines] >Thanks, >A scared Otis. Hiya. You've found a good place to ask this stuff. The people on this NG are, for the most part, very well informed. I don't think I can add much really to what's been said. I got very lucky in the hep-c lottery really. I had a genotype 2b which meant 24 weeks tx and only 2 x 2 ribavirins per day - in spite of being very overweight. I also had one of the lowest viral loads that I've heard of - around 91,000. However, this did not let my liver off the hook as I had a fair bit of damage (stage 2 grade 3). Your 4 million sounds marginally at the high end of average. I don't know how the 70% figure was arrived at. If you have geno 1a, the odds of clearing are usually pitched a bit lower than that around 50%ish but as has been said, a lot depends on your individual circumstances. There are medicines in the pipeline such as Telepravir which I understand might mean a shorter tx with an improved clearance rate. There are also interferons (such as Albuferon) that may only need to be injected 2-weekly and possibly 4-weekly. I don't think these have come through final testings yet though I may be a bit behind the times. The less frequent interferons are said to reduce side effects a bit. As for the side effects - you just don't know what you will get. I had a bumpy first two weeks then it settled for a while. Around 16 weeks it became a real drudge and I was persistently bad tempered. However, I was very grateful that I suffered no sleep loss (as some do) and that my skin didn't itch at all. Indeed, I slept wonderfully on tx and was thankful for that because by sleeping well, it helped me cope with the other stuff tx threw at me. It can be unpleasant but it's doable. You may be lucky. Some people get very few side effects - but don't bet on it. I really just want to offer encouragement. Forgot to mention. I cleared the virus at my one and only attempt.
dBo - 18 Sep 2008 21:02 GMT Yes, welcome aboard our little ship Otis. Sorry you have to be here, but you have come to a Good Place :)
I don't know that I can add much to what has already been said by the others, but I started out with a viral load of around 6 mill, type 1a, biopsy showed stage 3, level 3 inflamation, so treatment was not a question.
The good news is that I made it out the other side, virus free, one time around, 48 weeks of treatment. Going for my 2 year follow up soon still keeping the fingers crossed, so I guess the "scared" part never quite goes away. I too was "scared sh*tless", I guess we can all relate. But I've never been one to back down from ANYTHING so onward I went....
My best suggestion is to do a lot of searching of the newsgroup for past postings, you can get lot of good information and feedback that way.
Best of luck with this, stick around, you can get a lot of good info, feedback, and empathy around here, as we have all been thru it. Yes, treatment can be tough, it was for me, but what the heck I survived! :) One Day At a Time fella!
~deb
Otis T. - 19 Sep 2008 22:47 GMT Thanks to everyone who has responded. While I do read all these posts, I am really scared and try not to think about it. I have an appointment at the end of this month and will keep everyone posted on what goes on.
I saw this doctor once before and he said he wanted me to get an OK from my eye doctor as some people experience eye problems with treatment that cannot be reversed. Anyone know anything about this. Also, I am quite overweight. How bad will that lessen my chances of slaying the draggon? Please do not ask how much, just know it is quite a bit and I am embarrassed by it.
Thanks, Otis
Sara - 20 Sep 2008 00:13 GMT > Thanks to everyone who has responded. While I do read all these posts, > I am really scared and try not to think about it. I have an [quoted text clipped - 10 lines] > Thanks, > Otis Hi Otis
I also had to see an eye dr before treatment. I just had an eye exam again a couple months ago and she said my eyes are very healthy, so obviously TX did not do any damage to my eyes.
I was also quite a bit overweight when I started TX -- I'd love to lose about 70 lbs! I did lose about 20 lbs during tx, but I gained it back right after! I'm back down 15, need some motivation to work at losing some more but that's another issue :)
They did say that the extra weight was a strike against me, but I did clear the virus. I didn't worry too much about the things that were supposed to lower my chances (I had it for probably 30+ yrs, I was overweight) and just made up my mind to do what I was supposed to do and take care of myself as well as I could and hope for the best. It worked for me :)
just remember to let your dr know if there is ANYTHING different for you during tx. I have heard of people having to stop because it started affecting their eyes, but not many of us so I think it's fairly rare.
Sara
TX-012 - 20 Sep 2008 01:31 GMT > Thanks to everyone who has responded. While I do read all these posts, > I am really scared and try not to think about it. I have an > appointment at the end of this month and will keep everyone posted on > what goes on. It's okay to be scared. Being scared may not be fun, but it won't prevent you from DOING what you need to do to treat your hepatitis c. During the past 51 weeks I've certainly experienced fear, pain, exhaustion, depression, anxiety, you name it. Fun? No! Has it stopped me from sticking with treatment? Abso-frigging-lutely NOT.
Paul - 20 Sep 2008 04:57 GMT On Fri, 19 Sep 2008 17:47:18 -0400, Otis T. <ferrante276-otist@yahoo.com>, in message ID <6978d41h9fd5bl9vj8goopacnni2v60608@4ax.com>, in the newsgroup alt.support.hepatitis-c wrote:
>Thanks to everyone who has responded. While I do read all these posts, >I am really scared and try not to think about it. I have an [quoted text clipped - 10 lines] >Thanks, >Otis I'm very overweight too but managed to waddle my way through tx. At least the doctor didn't ask me when the baby was due. As for the eye situation, they didn't even bother checking on that with me. If they had, they would have discovered that I am nearly blind in one eye due to retinal damage that occurred in my early teens. I didn't tell them about it in case they refused me tx. I did experience marginally poorer eyesight in the first few weeks of tx. Not sure if it improved or if I just got used to it though (I already needed glasses by then anyway). I did get a watery eye on the damaged one while on tx. It was quite irritating. My GP misdiagnosed it as a blocked tear duct. However, it turned out to be blepharitis. Not harmful and easily treated. Four years on from tx I do get flare ups of it but I just treat it for a few days and it goes away again - for anything between a few weeks to up to a year. No special medicine is needed to treat the symptoms.
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