Just Got Labs

Just got my labs and I am definately overwhelmed by all the info, out there. My dilemna is to take treatment, my Dr. says I got do it, a friend says go see a Naturopath and wait for a cure, My numbers are Geno 1b,Stage 1, Grade 2, VL 1,161,000-- 6.06. I think the load is low but the grade is what I am nervous about,  I can't see myself on Interferon for 48 weeks and giving up my active lifestyle. Is it worth waiting a year or 2 and see if a new drug comes out  and will waiting hurt me more or should I take the treatment now?
Thanks

[fishdoc]

how old are you?

[TBall]

46 and a competitive racing cyclist is that helps........

[fishdoc]

is good, and its bad... BMI plays a factor in clearance rates, low is good.... Over 50 is a negative factor, is bad.

I am 50, BMI of 29, viral load 2.9 to start, stage 1, grade 0, and while not a real physical person, contrary to popular opinion (:), I have to use my brain a lot, which is also impacted on treatment...I started in february... waiting carries its own risks.... ask can do man for his opinion on wait and see... that said, I tested positive in 93, and have waited for that long to start tx, old tx really sucked.  I am 1a, and I think 1b's have a higher damage rate..

do you know how long you have had it?

[TBall]

I think I got it 20 years ago....

[fishdoc]

its a really tough decision, and it will significantly impact your life...

my son does downhill freestyle, somewhat competitively..... and has no health insurance... speaking of which, insurance is definitely a duck to get in the row... friole posted her costs, $85,000 for meds and labs and biopsies... she paid around $1500.

[bobbyullc]

at the risk of being stoned i would offer the opinion that you wait at least 1 or 2 years and see what is happening. if you got it 20 years ago and are only a stage 1 you are a very slow reactor. you MAY HAVE 20 MORE YEARS BEFORE HITTING 2.  MAY??
if you look at the stats for fatigue on tx it states 65-70% of us get it. i was stage 3 and did not even know i was infected?.
sorry to all you treat now'ers i do not wish to offend only an opinion. in the 9 years i waited the svr rate went from 10% to 50%now.
with my fatigue i could not even get my bike out of the garage.
good luck
read ALL you can.

[GrandOak]

Welcome tball.  Your geno is considered one of the more difficult to treat.  Fortunately your Stage is low, but I'd be concerned that your Grade is indicating something is going on with your liver.  LFT's (i.e. AST & ALT) would also be good indicators if such is the case.  VL seems rather high (see http://www.hepatitis-central.com/hcv/hepatitis/loadchart.html for more information on that) but as previously discussed here not too long ago, it is only an indicator on possible activity and whether tx is working once it is started.

Current new drug testing on likely prospects seem to be at least a couple or more years out at best (see http://www.hcvdrugs.com ).

As for Naturopath recommendation, while I've seen some credence to holistic medicines, particularily in the veterinary realm (i.e. canine as a past breeder/exhibitor), I for one would be more inclined to first consult actual MD's who specialize in this field.  By that I do not mean Infectious Disease docs, but actual a Hematologist or such.

Hope this helps.

[jmjm530]

I treated at age 58 -- stage 3, grade 2-4, depending on who read my biopsy slides. Also geno 1b. Athletic all my life including endurance events. Now 22 weeks past treatment and probably cured.
Felt great before treatment. Don't feel so great now.  

Treatment was the hardest thing I've ever gone through in my life. I would never recommend it to anyone who was a stage 1, especially if they are geno 1, the hardest to treat genotype.

Newer drugs like Vertex are now in the pipeline, and hopefully they will revolutionize the way hepatitis c is being treated. Initially they will also use intereferon and ribavirin, but treatment exposure to those drugs potentially will be shorter. Later, they may be tested without ribavirn and possibly without interferon.

I've heard good things about Naturopath's but honestly don't know much about that field. But whether you decide to treat or not, I suggest you have yourself followed by a liver specialist (hepatologist) who will monitor your liver enzymes and probably follow up with another biopsy in 3-5 years, or less invasive tests as they become avaliable.

As Bobby said, read up, study up. Learn as much as you can or want to. And not just here. Check out other sides like "Janis and Friends". Each site has their own personality, their own perspecitves.

Here are some recent threads about side effects both on treatment and post treatment. Copy and paste them into the address window of your browser. Take your time deciding. Don't let anyone push you into a decision one way or another, including your doctor. In the end, it's your liver, your decision.

-- Jim

http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html

[jmjm530]

Just like to add that your viral load is relatively unimportant as far as making  a treatment decision. Viral load can fluctuate wildly up an down and does not correlate with liver damage at any one particular point in time.

As far as grade is concerned, my liver specialist always focused on "stage", even when they thought my grade was 4. Regarding the Vertex trials, SVR (cure) data hopefully will be out in about a year. For me, that would be a reasonable time to wait before making a decision for anyone except those with significant liver damage.

Meanwhile, as mentioned, have yourself followed by your doctor. It's not unreasonable to get a second or even third opinion. I had three separate opinions from different hepatologists in the four years preceding my decision to finally treat.

Again, all the best.

-- Jim

[Kalio1]

Hello and welcome to the forum. Wow, racing cyclist, I guess you arent too fatigued! Have you had a biopsy? Without it you have no way of knowing the true condition of your liver. Liver condition is an important factor in deciding if you have time to wait on treatment or the "new drugs" being developed.There are many other factors too f course but that is the key one I think. If damage is nil or minimal, and you know that FOR SURE, through your blood tests AND biopsy results, then you have some wiggle room. Without the biopsy, you are flying blind and deciding without the facts in hand.
Glad you posted, its always nice to have new people join in even though it is sad they have Hep C.

[Kalio1]

SO nice to see you, how are you doing? I hope you are feeling better lately, I miss you around here!

[strator]

tball-Welcome to the forum. First things first, take some time to learn a little more about the disease and treatment. I am a 1a grade 2, stage 1 to 2 and took almost 2 yerars to prepare for treatment. Partly because I needed time to get more solid sobriety, and partly because I'm a single Dad with my son and my 83yro father at home. I do hard physical work, and things were just looking up for me career and life wise when in the period after I got diagnosed. I figure I had about 30 years but despite my drinking and addictions my dr was suprised i didn't have more damage. The point of that is that both this disease and the present treat affects individuals in a very random way. First accept that you need to monitor it with a doctor, and that though you may have to or want to do something about it, this isn't something to race into. Remember you've had it 20 years and you are still kicking. It helps to get over the overwhelming feeling, by setting some small goals. Like...what can I do today about hep c... I can read and learn 2 new things, I can(as you've done here) begin to talk with people who have been through it and are going through it. I can start eating better, and be kinder to my body. Many Doctors can be great, knowledgeable and compassionate, but they are drs who likely don't have the time to give us all the info they know, and have not been through it though they may have treated many and see the different ways it effects people. We all go into this at different speeds and paths, none are perfect, unless you are having symptoms ruining your quality of life, and more advanced liver damage, you have some time to get prepared, mentally, physically, mentally, finacially and spiritually.
I chose to treat after attending a support group, reading up, and seeing a therapist for months. That was me. I felt  prepared and for the most part got through treatment very well, doing daily hard physical labor throughout and keeping up a hectic lifestyle. Having this place to come to helped me do that. I was a slow responder and cleared only about 10 weeks before my 48 weeks would be over, many would have stopped earlier but I was getting through well so continued hoping in fact to extend 36 weeks. In the end I burnt out a few weeks short of 48, the side effects, my work, a drastic loss of 45lbs during treatment and the recent heat wave did me in. I got cocky and pushed to hard, finally having to stop treatment. For me it was just as hard a decision as beginning treatment. I'm absolutely grateful I met the great folks here, and that my basic preparation for treatment was getting help dealing with acceptance, my reactions to things, learning how to seek and accept help, and...learning to try to make the best decisions I could muster..for me and family. It's a mountain that shouldn't have to be attacked and run up with abandon. It's a mountain that takes research, a day at a time attitude, coordination with loved ones and their needs, and the understanding that what you go through will have ups and downs that pass..both physically and mentally. Search inside yourself for peace before you run through such a possibly traumatic treatment. Don't get me wrong, through it all I am 100 percent sure that I grew and healed through treatment, getting more from treatment than it got from me. I certainly didn't do it perfect, sometimes I was like that person kicking and thrashing in the water instead of calmly reaching out for the helping hands extended to me. But WE got me through it, as it does so many. So whether youb decide to treat or wait, one of the most personal decisions you may ever make, taking help preparing for life in general, will help you prepare to maker the decicion in the first place. When you look at the mountain and plod ahead for the finish, you may stumble a lot. "Go by a yo-yo and take it up the mountain, if you use it daily on the journey it will keep your focus on each step, there may be less stumbling, and all of a sudden you'll look back and be suprised at how far you've come.
Stay in touch here, there is as much laughter, hope and success as tears and struggles and frustration. It becomes a community journey, despite the decisions and paths you choose in particular for you.
Be Well,
Don

[amommy]

Hey, how are you feeling?  I just love it when you come around here :)  I hope the sides are subsiding and some of the weight is coming back on!  Give us an update when you can please.  How is the kid and your dad doing?

[NYgirl]

Just so you know - the ONLY cure that works right now is the current treatment of Interferon/Ribavirin.  You can go to a homeopath or whatever but no matter what they say they CANNOT cure you.

We've seen a lot of people try different things before and they quite simply do NOT work.

Treatment isn't fun but it is doable. And believe it or not...the time goes by so FAST that its unbelievable.

To treat or not is a decision only you can make, based on job, insurance, family, support group etc. But just know if you do...we are here to help with all this overwhelming stuff.  We've ALL been there!

Learning what it all means might be a pain but it is simply the most important thing you can do to help yourself.

Remember: there is NO cure EXCEPT the current treatment.  Don't let anyone sell you any expensive herbs or whatever...oftentimes they can make your condition much WORSE and it will NOT cure you.

[cuteus]

please make sure you read as much as you can about both hcv, including its extrahepatic signs
http://www.medadvocates.org/diseases/hcv/extrahepatic.html,
and treatment.

you also must know that the course of the disease is non linear, meaning that even though you had it for 20 yrs and still have only a stage one damage, it does not mean that it will take another 20 to get to stage 2. The virus and the body's reaction to it is unpredictable, you can die with stage one 50 yrs from now, or you can be stage 4 in 3-5 yrs. Do not let anyone feed you the misconception that you will be ok for another 20 yrs because you are a one now.  That is why is important that, in addition to getting our opinions (that is all they are), you need to go to natap.org, and hcvadvocate.org, projectsinknowledge.com and read all you can.

read where the new drugs might be a few yrs from now, they might not be used alone for another 10 yrs, no one knows. http://www.hcvdrugs.com/

read, and learn what your choices are, and what possible outcomes might come should you wait or treat

I will tell you my experience and you can decide if any of it is useful.
I was 51 on diagnosis(dx), was having fatigue and body aches before dx, stage 1 grade 2, low viral load.  learned that as I age the drugs might not be as effective, that no one could tell me if the stage one happened 20 yrs ago and remained that way throughout or it had just started to happen and was now going to continue progressing. No one can tell you.

Some folks here had gotten rid of their aches after tx, and I thought that would be a nice outcome. But most of all, I DID NOT WANT TO LIVE WITH THE VIRUS, PERIOD!
I treated with pegasys/copegus for a while, had a slow response but cleared the virus, have been negative for over 18 months post tx.  I had a desk job, which I kept the whole time, was able to do two classes at the Y wkly, and I am not worse off post tx because the virus is gone. The aches did not go, but I will learn to manage as I did before tx.
If you have good insurance now, it might be a factor to consider also.
here is an article on the watching approach:
http://www.prnewswire.co.uk/cgi/news/release?id=143867
cost effectiveness of treating with mild damage:
http://www.hcvadvocate.org/news/reports/AASLD_2005/11%2015%20treatment%20-1.htm#treat_15
predicting response to tx:
http://www.hcvadvocate.org/news/newsLetter/2004/advocate0404.html


read, read and read, but not just here!
good luck

[friole]

Welcome to the forum.  I was sitting on that same fence in May 2005, decided to go ahead and treat, and am done now.  My stats were similar to yours altho I am a (was a) 1a.  1.52 million  IU/mL viral load, and a biopsy of grade 1, stage 1.  I am about 10 years older than you and came thru treatment fairly well.

What type of doctor are you going to that is recommending treatment?  Do you live in a big city that has any liver specialists (hepatologists)?  Many here seek consultations of the most knowledgeable liver specialists in their area.  There are truly a lot of fairly uninformed doctors with regard to hepatitis C.

There are a lot of reasons to treat and not to treat. I took a paper and made a reasons to treat column and a reasons not to treat column.  How you feel is one of them - and you seem to be at peak health - so that may be a reason not to treat.  The point of time you are in your life is another - that was one of my deciding factors -- age, no kids at home, a job (I am a co-owner) that I felt I would "relax" on if necessary for a year (and I worked all the time, but only at 40% most of the time, and at 20% some).  Insurance was another factor for me.  As Fishdoc pointed out, I got a printout of all my tx costs from my insurance company and the cost totaled about $85,000.  My cost was about $4,500 (not $1500 - must be eating too many hot chilis, fish).  The infection factor was another reason to treat.  Altho I have been married 30 years and husband is negative, there is still the possibility to transfer this disease from blood to blood, and I wanted to put a stop to that.

Research research, as many have said here, and ask lots of questions.  Good luck - it is a hard decision to make.
frijole

[NYgirl]

Said:  Do not let anyone feed you the misconception that you will be ok for another 20 yrs because you are a one now.


That is such an important fact and one that goes straight over most peoples heads.  The logic sounds sensible well I haven't gotten that bad in all these years...I'll be fine!  Well..it's not necessarily true and I don't think doctors take the time like you just did to explain WHY.

And man is that important when deciding isn't it?

[cuteus]

I keep reading so many people stating that after 20 yrs they are only at stage one, and how lucky that is, but how does anyone know when THAT damage happened, what if it became stage one recently and is going to progress further? No one could tell me WHEN it happened. I know stats suggest slow progression but  I sure was not going to take a risk that it was speeding up its progress.  Anyway, we can all gamble with tx or waiting, except the stage 4 people. No room for gambling on waiting, unless tx failed.

Hey NYG, you are becoming an avid reader of hcv! it happens to most members here. NOw, remembering what we read is another thing...

[TBall]

Thanks for all the advice, I now know this decision will take some thought, not a cut and dry decision at all. I will read everything I can. I will let you all know what happens and thank you for the warm welcome to this site.

[Morgaina]

Welcome tball, this place will not let your mind go to sleep or your attitude become complacent. Stick around, no matter what you decide, you will have support through it all.

Strator, good to hear you're voice! How's rebuilding coming along? I'm having a horrible, no good, very bad day.(you'd have to read Robert Munch to appreciate that line.) I'm just getting scared and trying not to get neurotic. One day at a time right now! (for you too, hope you're having a honeymoon period, all energy, bright attitude and hope,those are great!!!)

[Pdilly]

You are going to have a lot to mull over.  Stage 1 is good Grade 2 is not bad but not good either.  Your doctor, have they said if you should treat now or wait until 2009 or 2010 to treat with the new drugs slated to come out about then?

[Morgaina]

Thanks for the words guy, you can get to feeling alone and a little crazy without some kind of contact. Tommorrow will be a better day, going to start prep for my new classroom! (My friends dont do well with the depressed, crazy, anxious days)

[strator]

Hey all,
Thanks for asking how I'm doing. To tell you the truth it's amazing how fast some of the sides cleared after a couole of days off the meds. The chest pains, neck rash, overwhelming fear in the morning were basically gone by the 2nd and 3rd day. Reflux and heaves subsided and chest rash has lessened everyday. Put on a few lbs already with the return of the appetite. Still can't sleep much, some sides like cramping seem more constant, staying very busy, getting small bouts of anxiety but there's been a lot going on family wise. Seems strange that my daughter called me during one of those bouts to talk to me about the anxiety and stress her policeman husband has been having since the shootout I mentioned in anise's 8/12 thread about post treatment. I related more because I'm no stranger to sudden violence then because I have any handle on dealing with anxiety.
Biggest difference since stopping is waking in the am and just going about the day without having to push through fear and aches. It's amazing how stopping defined just what the meds(and I) wee putting my body and mind through.
Managing to be more relaxed, patient and more willing to look for balance then just throwing myself into the chaos of life. Guess a clearer mind brings clearer thoughts.
Playing phone tag with the doc but it's only been a couple of weeks.
Morgaina: Man I wish I had as good advice as you gave me a few weeks ago. Just remember when you get that feeling like there's a storm ahead...All things shall come to pass...(Not to stay, to pass.)
Be well All,
Don
Be well all,