To treat or not?

[gggirl72]

Hi,just found you. Diagnosed since 2004 (contracted prob 2001) 36yo female. geno 1a. Feeling normal, healthy wouldn't even know i had it until it came up in a pregnancy blood test. Have 2 and  4yr old plus supportive husband. Been putting off treatment because of kids and side effects FREAKING me out! Booked in to treatment centre again for sept. GP recommends me doing treatment because of age, sex etc says Liver fuction good but viral load high. Side effects and managing 2 & 4 yr old scary. I'm pretty healthy, few wines a month-if that. Any advice? All I read about are shocking side effects. Has anyone else manged them with kids, work etc? How do u manage aches, can you take pain relief?   Does anyone know what makes viral load high/low? I cant imagine suffering for 44 weeks and then still having it, when I am not suffering at all now!
Thanks X

[newleaf09]

48 weeks is the standard course of treatment.  We all get pretty freaked out by the diagnosis and even more so after reading the side effects of the treatment drugs.  Usually, a liver biopsy is used to assess the damage that's already been done and help make the treatment decision for you.  This disease creeps up on you and leaves you healthy until it's done terrible damage to the liver that compromises your life.

That said, you've had the virus for only 5 years.  The viral load is not a good indicator of illness; it can jump around from very high to very low and has nothing to do with the progression (damage being done to liver) of the disease.  Your doctor's plusses for treatment are the fact that you are young and female, both indicators of greater success with the treatment.  The reasons not to treat YET are your small children who need you in top form to keep up with them, not on chemo.

Liver enzymes indicate inflammation, something serious going on in the liver.  If the ALT/AST is normal, you are probably all right at this point.  If it were me, I'd wait a few years until they release another medication to be added to the Interferon & rivivirin that are the standard treatment.  The new med is a protease inhibitor, which increases the likelyhood of a positive response and will come out in 2011.  

Keep an eye on your AST/ALT, remove alcohol and anything else that could possibly be hard on your liver while you are waiting for the right time.  I won't try to over-reassure you by saying the treatment is easy, it's not.  It is bearable, though, and your doctor will do everything he can to deal with the drug side effects as they come along.  The addition of the third drug, the protease inhibitor, may even give you the opportunity to treat for 28 wks. instead of the standard 48, depending on your response to the drugs.  In 3 years your youngest will be in kindergarten and the new drug will be available.  I'd wait and watch if I were you.

[GSDgirl]

If I read it correctly she had the disease for ablout 8 or 9 years not 5.

liver enzymes are not a true indication of liver damage although that is why some get diagnosed in the first place.  I would reasearch my butt off and make an informed decision.  Quite a few worked the whole time on Treatment, some even for 72 weeks.  I personally would want the virus out of me as soon as possible.  Good luck

Denise

[oldhepper]

I've had HCV since 1965 and have never been treated. I'm 67 years old and seem to be in better health than others my age without HCV and I am on no meds. I was married for 26 years and bore and raised two kids.

My biopsy in 2005 indicated Grade 2, Stage 1 and my last ALT and AST tests in 2008 were still in the normal range, my geno is 2b, and it's just lately that the disease has begun manifesting itself in noticeable symptoms.

But I am, after all, a 67 year old woman - I'm going to have SOMETHING!

Also, until the last few years, I was very slender, extremely physically active, working out regularly and engaging in a rather strenuous hobby - home improvement. I sincerely believe those activities and eating healthy foods for most of my adult life accounts for what I thought was excellent health.

My thoughts for you would be to hold off on treatment but try to eat as healthfully as possible and stay in shape.

Best wishes to you whatever you do.

[Marc1955]

You should not be in a rush to treat and you should not be guided by your gp on this issue, no matter how knowledgeable he or she seems. Ideally you want to be under the care of a hepatologist. These are usually found at teaching hospitals and in large cities. It's worth a two hour drive each way to have one.

You can't know the importance of treating now without a liver biopsy. It is a routine proceedure. Hopefully your insurance will cover it.

There are many new more effective treatments around the corner. Unless a biopsy determines that you have substantial liver damage, you will want to wait a few years for those treatments to become available.

Do not rush into anything but don't bury your head in the sand either. Educate yourself and find a skilled treating physician. God bless.

[GSDgirl]

My mother is a 70 year old woman who golfs 3 or 4 days a week and walks the course.  She is also slender and with the same hobby as you, home improvement (hers).  She does not have hep c.  By your comment that you were thin until the last few years sounds an awful lot like what happened to me, I got a big belly.

I on the otherhand at 46 was also very active training dogs in the sport of Schutzhund, riding horses, eating healthy, throwing hay after baling and thought I was healthy.  But I seemed to get the "flu" a few times the past few years, rested and felt better.  I started to get a belly and the fatigue was terrible.  Then the blisters started on my hands.  The blisters were Porphyria directly related to Hep C (which I didn't know I had yet).  

My thoughts are---why wait until the damage occurs?  Why not get rid of the virus and get on with life.  Sure I still have some fatigue but at least I know it is gone.

Oldhepper.............just think how much better you might feel at the age of 67 if the virus was not still destroying your body?

Nobody konws the longterm effects of the newer drugs, if one can clear with the old drugs (which is still somewhat an unknown) at the age of 36 I say get it over with.  This is just my opinion but I firmly believe that the sooner it is gone the better.

Denise

[Marc1955]

Denise,

Of course, you are entitled to your opinion, but it is not well-considered. Depending on other factors, the current cure rate for genotype 1 is roughly 50%. And the treatment is not without serious issues and implications. It's not so straightforward as "getting rid of the virus." If only that were the case.

If you are relatively young and have relatively low level of liver damage, it would be foolish to treat now rather than waiting for the new treatments in approximately 1-2 year's time.

[mikesimon]

At 4 weeks you have a real good idea of the odds of SVR so it's not necessarily an automatic commitment to 48 weeks of treatment and a 50% success rate at that point.
It's a very personal decision and, the sooner people realize that it is, the better support we can lend. My opinion is that Denise always seriously considers this subject so I disagree with you that her opinion is "not well considered". You may disagree with it but, that's just your opinion.
You say that treating would be foolish.  Are really competent to render an opinion like that? I have no reason to believe that you are.
And she didn't advise that she should treat. She said how she felt and that she believed the sooner the virus is eradicated the better. I am not sure there is a strong argument against that proposition.
And, let's be clear about this - we really don't know for certain what the long term effects of PIs might be. We can hope and we can look at HIV patients but we really don't know - we have no long term track record. And especially when combined with what so many members here describe as poison - and PIs will be dosed with interferon and ribavirin for the foreseeable future. PIs have shown to be significantly more efficacious and I think most of us know that and are excited by that. I own stock in the hopes of the PIs being a great drug for HCV patients. But, I also know that some people abhor the idea of a living virus inside of them. They want to be rid of it now. And, if they feel as though they must, then they can treat for 4 weeks and see their VL and have a good idea of what the odds are and get a taste of what 48 weeks treatment will be like. In my opinion that is not foolish. It is that person's decision and that is personal.
Mike

[ArthursMom]

My biopsy results were stage 0, grade 0 and to me it made perfect sense to treat.  Why let liver damage get a foot hold as I get older and more difficult to treat?  And I wanted the virus gone!  I was informed of the possible side effects of treatment, and also the fact that I would know in the first few months if it was worth continuing.  My dr. treats treats folks with hcv, and also co-infected w/hiv, so he has a lot of experience. He said that most people can tolorate treatment, even though it isn't easy,  some have to take a leave from work and a few react so badly that they take them off treatment.  I ended up tolerating the tx and treated for 64 weeks.   Am now waiting for my first eot pcr on Sept 28th.  Nobody rushed me into treating.  I was encouraged to take my time and think about it.  My treatment team even provides a training class for those considering tx.  I don't believe I made a foolish decision and if this round of tx doesn't work, I'll do it again.

[oldhepper]

Surely this forum is to gather information and to give and receive, hopefully, caring support and information for what ails us; not a venue for sniping and argumentative comments. Differing opinions are a plus and a way for others to cull the info they need as it pertains to their own experience, knowledge and research, but only if those opinions are presented in a caring, non-derogatory, non-fault finding manner.

All of us - living with HCV, treating, not treating, treated not treated - need all the caring support and information we can get.

I'll shut up now and wish the best for all of us.

[nygirl7]

To be quite honest I'd think someone might take their GPs advice a little bit more seriously than somebody on the internet.  Just my opinion but not ALL GPs are morons and he might have some idea into her background that makes him feel this is a good time to start treating.

With the fact that PIs have not been approved yet and have been in the works for years, and that there is NO definite date when they will/might be approved - a doctor might be looking at other things which are CRUCIAL to determining if and when you should treat.

Support system, insurance, finiancial stability, workload etc etc. are ALL equally as important and even MORE important than high viral load or high liver enzymes which really don't always mean much.

I felt much as Arthurs Mom does...I had decided to treat right away so that I didn't get too much fibrosis.  Unfortunately it wasn't the case and I was already stage 3 but I didn't want to let my liver and health go down the tubes before I attempted treatment. That and the fact that not everybody wins successfully the first time I wanted to make sure I had enough time in case I needed to do it  again.  Moot point for me though anyway.

Of course we all agree that finding the best hep doc available to you is crucial but like Denise said take the time and learn learn learn all you can for youself.  That way you can take in opinions and data and facts and then decide with your own mind what you want to do.  Once you do that you will have the conviction you need to be successful if you should decide to treat.  Oh yes I know it's not all mind over matter but on the days  that are hard...it sure helps!

Don't let any horror stories of side effects put off treatment.  Please. I had pretty drastic sides yet as a single mother managed working full time and treating for 72 weeks with only 3 days off and I'm a big baby!

But it was important to me to beat this now, the first time and I went as hard as I could for it.  Every time I wanted to stop I looked at my kids and thought to the future and somehow it sure pulled me through. Since I knew I had to do it sooner or later I figured the first time...go for the brass and never looked back.

I was a geno 1A and also 1B and have been SVR for well over two years.  It was worth it, every single bit and I am very glad I didn't wait for something that SEEMED like it might be easier but might never have worked out for me.  It seemed like a better backup plan than anything else.

But that's just me.

Good luck to you.  LEt us know whatever we can do to help!

[nygirl7]

And especially when combined with what so many members here describe as poison - and PIs will be dosed with interferon and ribavirin for the foreseeable future. "

Oh yes just so you do understand.......this means more likely more severe and drastic side effects for some people than with just regular old combo treatment.  it might shorten the time but leads to a bigger drop out rate and it might make it  much more difficult for you to even finish the course of treatment.  Again if the FDA finally approves them which we hope for but nobody can bank on for sure.

Just something to remember in the equation - either way you should have all the knowledge and then decide for yourself the best way to go.  

[nygirl7]

caring support and information for what ails us; not a venue for sniping and argumentative comments. ...but only if those opinions are presented in a caring, non-derogatory, non-fault finding manner. "

I'm confused I don't see any sniping or arguing here at all I just see people sharing basic information and knowledge that they've learned over many years with a new less uninformed person and trying to help.  Not one snipe in the bunch and actually a pretty solid factual thread to learn from.

What would make somebody who never posts post THAT comment right now?

Looks to me that everyone is being extremely civil and helpful I'm not sure what this comment was intended to do?

[gggirl72]

Thanks for all your information. I have found this site extremely informative. I live in Australia and the interferon/riba is being funded. I have to be accepted, which I think isn't a prob. My problem is that of course the liver clinic is only "PRO" treatment. so it is hard to get opinions on both sides. Free, is a positive. But the main thing is the kids. I'm already up during the night, then more when they're sick etc. I feel very healthy, but get stuffed just from being a regular mom! I'm sure that isn't hepc related! To be nauseaus, flu-ish and try and keep up with them freaks me out. I'm still thinking. We dont have to have the biopsy to get the treatment here. Maybe it is still worth pursuing to see how my liver is?
Question???Do hepc people with more seriously damaged livers, have this due to a non-healthy lifestyle? As many (not all!) hepc people have contracted through needle use? Are the non-drinker/healthy ones have better liver?
I have contracted not through needle use, but from ex who had. Have had small periods of alcohol and experimental drugs, but never long term. Does this make a difference? Or not?
Thanks again for all your advice, it is honest and really helpful XX  

[WriteItDown]

Drinking will certainly make liver damage worse, but how you got the virus doesn't make any difference.  You definitely want to stop all drinking, and living a healthful life can only be good for your liver, BUT it isn't necessarily an accurate predictor of what kind of damage you might have.  Some people progress very slowly and some more rapidly.  In the U.S. my husband's doctors over the years have had different opinions regarding biopsy (which is the only way to tell what sort of state your liver is in, and even biopsy isn't 100% accurate, since they are only looking at a very small piece) -- one doctor said there was no point in doing a biopsy if you were going to treat anyway; another saw the biopsy as a good way to decide if you needed to treat or could wait for better drugs.  That's what we did -- he had periodic biopsies and his bloodwork checked -- and a biopsy that showed some progression made him decide to treat.

In the intervening years the treatment has improved -- they did not have pegylated interferon when he was first diagnosed, for example, and now he's participating in a clinical trial of SOC combined with a new protease inhibitor.  You could decide to go ahead and treat now; or you could decide to wait a few years until your kids are a bit older, and, hopefully, Telaprevir is available -- this decision could be made after having a biopsy, or not, I guess, depending on your doctor.  You could also seek a second opinion, since, in my husband's experience, doctors are very different when it comes to advising whether and when to treat.  

It's definitely good to learn as much as possible, get all perspectives, and then take a good hard look at your own situation and decide what's best for YOU.

Best of luck!

[smaug48]

Unfortunately there is no way to know how you will react to treatment.  Some people continue to work and don't have to make many lifestyle changes, some get pretty much laid out flat, and probably most somewhere in between.

Hopefully some mothers who treated while taking care of young children will chime in.

smaug

[chuckles333]

My Hep C in combination with meds I was taking for a recent heart attack caused my liver enzymes to skyrocket. My cardiologist suggested I begin treatment ASAP and refered me to an outstanding hepatologist. She was very cautious about proceeding with TX given my cardiac condition but after viewing the results of my latest cardiac stress test she decided to proceed.
The treatment was quite easy at first. I had minimal side effects and was easily able to attend work. My bloodwork was done bi-weekly and it showed that the anemia (the big concern) that people often get was not a problem in my case. As my treatment progressed my side effects worsened. By the time I was done TX I went down the list of side effects, and I could honestly say "had it, had it" to nearly all. The good news is that it never really stopped me from doing the things I wanted, it could be controlled with prescription and non-prescription drugs and my treatment has, so far proven successful. I was a type 2b and treated for 24 weeks. I get my EOT results on the viral load next Friday, then I have my 6 mo VL in the winter. My 4 wk and 12 wk tests both came back "undetectable".
My wife is also infected with the HCV but hers is type 1a. She recently found the geno-type out, after a visit to the same hepatologist. We assumed all along that we would have had the same type but (unlucky for her) this was not the case. Her VL is about 2,000,000 but her enzymes are "normal". She has not yet had her biopsy but has had a thorough ultra-sound. She is scheduled back to see the doctor in October. She told me that she would commit to TX for the 12 weeks that are required to see if she is a responder or not. She knows what my teatment did to me, that hers will be twice as long, and even with not having had her biopsy yet and being fully aware that better treatments are just around the corner. I think I would too. If you prove to be a non-responder you can then still wait for the new drugs. It's a very personal choice for anyone. Get all of the facts first so you can make an informed choice.

[Willy50]

Just my opinion and agreement on several snippets of what others have said;

I first agree with Marc to get a biopsy and if considering TX you will want a good hepatologist.  The odds are however that if you were recently infected your liver staging is probably fine and will be for some time.  Instead of a biopsy (or pre-biopsy), you could also first consider a fibrosure test, a blood test that is relatively simple, fast, cheap and may be about 85% the accuracy of a biopsy.

I agree that you should knock off alcohol intake.  Some here feel there is some buffer but until you know your staging why risk i?  I would also try to limit other exposures to N-saids and other liver irritants as best you can.

I would do a lot of reading here before making any serious plans.  A genotype 1 will require a large commitment of your time.  With little kids you had better have your ducks in a row.  I have raised 4 kids and little kids are a huge commitment.

I agree with Mike that one can make a simple assessment at week 4.  One *could* possibly get an SVR a few years sooner.  My gut feeling is that you may be a stage 0 or stage 1 and would remain so for the period until the PI's are approved.  Most people do not face serious damage until decades have passed.  I don't know where you sit today but you can get a biopsy or some other evaluation and decide based on that.

PI's could be approved in under 18 months.  They will bring the aggregate 40-50% SVR rate up to 70-80% IMHO.  Many people will be able to treat in half the time.  My guess is that waiting would provide an easier, shorter and more certain outcome.  

It is possible that PI's might not get approved but I think they are a shoo-in for approval.  Over 2000 people have dosed with Telaprevir and I believe that other PI's have have similar safety profiles so far.  There is a counter argument that in limiting the exposure to either or both Interferon or ribaviren the triple therapy could end up being safer and providing fewer post treatment maladies as well as a quicker recovery from TX.  

If one *really* was comfortable watching and waiting there are probably even better treatments coming than a PI plus IFN and RBV.  My hepatologist (last year) thought that they would have a cure in about 5 years.  
Josh Boger, from Vertex this year mentioned that he felt that Vertex could/would have their Stat-C drug combo approved by mid decade; roughly 2015.  That would be some permutation of Telaprevir and VX-222 (a protease inhibitor and polymerase inhibitor, respectively).  The first such trial of this is expected this year and Phase 2 trials to initiate in 2010, I believe.

Just my opinion, of course.  Keep reading and you will be able to make a much better informed decision.

best,
Willy