Should I be more concerned?

[HypoKondriac]

I found out about 5-6 years ago that I have HepC. It was discovered during routine blood work that my liver enzymes were elevated. Seems I have had it for more than 30 years and never knew it, not uncommon from what I've read.

I've had 2 biopsies - 3 years apart. Am not prescribed any treatment.

Now I turn on the TV and hear about Natalie Cole who is having chemo and/or radiation for Hep C?? or does she have liver cancer???  

Even though my doctor gave me my news like a death sentence....said "I didn't know how to tell you this" when I asked how my routine blood was... I have never been much concerned because it doesn't affect my daily life -- not nearly as much as my RA does!  I requite LOTS of sleep - 10-12 hrs - but always have, and do also have RA which also causes fatigue...so...

But because of hearing this on th news I read some more abut HepC and it's so scary.

If my viral load stays low, i have nothing to worry about, right?  But then I read that with age it gets worse. I'm 63! No kid. Between this and my RA ad all the meds i take for that, I wonder what my life expectancy is.

[meki]

Any ************** that you take to eradicate a disease is termed Chemotherapy.

Don't think Radiation.

Interferon based treatment is considered chemotherapy.

Also - folks can slide really quickly from point a --- to point b.

It really all depends on you --- and your genetics.

VIRAL LOAD means Absolutely NOTHING in this game --- except maybe as a marker to determine how well you are responding to treatment (chemotherapy)

Now - as far --- as --- well is HCV deadly?

I think it is.

I think it kills things in your body --- as it rampages through your system - but mainly affecting only your liver

It's only my opinion --- but knowing what I know about HCV and it's speedy effect on me --- the damage it did --- and how I feel NOW --- over a year and a half post TX...

Well - I'd have to say --- I didn't know that it was the HCV killing me so slowly...

And now - I feel like I'm a teenager with achey (achy) bones...

I have not felt physically better since WAY before I started TX.

I am pro - TX --- there are others who will tell you their side --- and let me tell you ---- I wouldn't do a second round of TX. I had the worst time of it.

But the first round for me was worth it. I got SVR.

And I feel like I'm healing every single day... in mind, in body and in soul.

So much different from the way I felt since about the time I believed I contracted HCV.

So - do I think you should talk to your doctor about TX?

Yes.

Most definetely.

I think you should weigh all of the evidence and facts.

Do your research --- look at the websites - ask productive questions and then sit down and think about it.

Talk to your family and friends....

They won't know much - but they will know what you tell them.

Present it to yourself like a business deal --- or a banking deal.

Then choose for yourself what is appropriate for YOUR life.

Honestly TX can be a LIVING HELL for some folks. I was one.

Then there are folks like Andiamo who went through TX about 9 times... some bad - some not so bad.

I think that you have to choose for yourself.

I think you have to weigh it on your own merits and choose what is most appropriate for you - your lifestyle and your choice for your future.

Does it turn into Cancer?

It is the leading cause of Liver Cancer --- from what I understand.

It's the 12th cause of death according to a morbidity study Alagirl posted...

I think it's important to know about all of it.

Spend a few months reading about it.

It is QUITE POSSIBLE that HCV caused your RA --- IT is quite possible that HCV is causing your fatigue.

It is possible to have a decent biopsy where HCV may be hiding and damaging other parts of your body --- OR THAT your immune system is working so hard --- that it's causing problems for the rest of you.

go to Janis and Friends (google it) --- go to HCV advocate --- and read the posts here.

When I first came to this board --- I was so sick on TX --- didn't know ANYTHING --- I learned from reading posts months back --- and learning.

And I learned so much my head swam in circles...

But overall - it made me glad that I took the time to read it.

Much luck to you - and nice to meet you.

Hope it all works out for ya!

Meki

[meki]

I dunno why they blocked out med - i - cation

[Trish77]

Your viral load being low doesn't have much to do with you being okay.  It's the progression of your liver damage that is the issue.   You say you had two biopsies but you don't say what the results were.  Care to post that?  When was your last biopsy?

This disease is not "linear" and by saying that, I mean that there is no set measure of progression, that in X number of years your liver disease will progress X amount.  That's an individual thing for each person.  Therefore it requires regular monitoring by biopsy over the years.

At some point, you need to evaluate your treatment options simply so you know what they are and the results of a recent biopsy are vitally important to helping you do that.  Then you know the current state of your liver and then you start adding other things to the mix.

What genotype you are - if you don't know that, please ask your doctor and find out - different genotypes respond to treatment in different ways.   Genotype 1 is harder to treat and therefore currently requires 48 weeks of treatment.  It's the most common genotype in North America.  Some of the other genotypes require 24 weeks.  However, there are variables in all that based on certain factors but that's the basic for starters.

How old you are ... the older you get, the longer you've had it .. the more time you're eating up.  That is simply a fact that needs to be taken into account.  It is also a fact that people die from other causes rather than the HCV.  It's also a fact that HCV can be the catalyst for other illnesses.  As you can see...there are a number of things to consider and it's how it applies to YOU that is most important.

What the current treatment therapy is and what the side effects are and if it fits into your life financially, emotionally and into your relationships with family and those you love...if you're lucky enough to have time to decide.  Not everybody does and again, that's where that recent biopsy comes in.

This is a pretty simplistic overview .. it gets you started.  I hope this helps and good luck.

Trish

[HypoKondriac]

THANKS!  Yes two biopsies. Results? I am embrassed to say that I do not know exactly except that my gastro/hepatologist said NOT TO WORRY!  Said it is NOT showing any damage - or at least no serious damage to my liver!

Yes - I told my family when I was diagnosed.

How TIRED does it make you guys?

[meki]

I was pretty tired - still am some times.

Other times I have more energy than is needed.

Each person responds differently - you will have to do a lot of research --- or at least you should do a lot of research and ask a ton of questions.

Remember that those who go out and seek answers about problems ---- are usually ONLY those that have problems.

So don't let a LOT of online discussion sway you - if you're only seeing the negative side. Simply said there are millions who have treated - and only a handful of those have gone online to discuss it.

OK?

There are both good things and bad things about going through treatment - and you will have to weigh the pros and cons for yourself.

I can tell you - I ONLY would have treated ONE time.

If they had asked me to do it again I would have said absolutely not.

But ---- I am GLAD that I did treat the first time and only time.

I would --- do the FIRST treatment over again, even though it was hell. But, I would never do it a second time.

So - with that said - go forth and conquer the information highways!

GRIN


Meki

[HypoKondriac]

thanks..

"There are both good things and bad things about going through treatment - and you will have to weigh the pros and cons for yourself."

well, my hepatologist has not suggested any. so, i'm ok with that! :-)

[IAmTheWalrus]

Stay on top of this. Like Meki said it can progress from A to B quickly sometimes. You should have your liver condition examined regularly. Just because liver enzymes are normal does not necessarily mean that your liver is fine, just that it is still compensating. Blood work is easy to monitor. When does your hepatologist suggest the next biopsy?

[HypoKondriac]

I've been told to have a biopsy every five years.

[Trish77]

I'm pretty sure Walrus will chime in here on that .. however, at your age and the length of time you suspect you've had it, I wouldn't be waiting any more than three years...and really, I'd go two.  Just to keep tabs on it.  

I would also suggest you at least learn what treatment involves from the point of view that you understand the impact it will have on your life and be somewhat prepared to fit it into your life if you end up having to do treatment at some point if your condition deteriorates or simply if you find yourself in a life situation where you can accommodate treatment at that time.  At least know what's involved, what the drugs are, what's coming in the future and make yourself aware of your options so that you can exercise them fully armed with solid knowledge and understanding if required.  That would be my advice to you.

Good luck.

Trish

[nygirl7]

I never had any symptoms and was already stage 3 - just because it might take 20 years to get to stage 1 doesn't mean you can't get to stage 4 in just a short amount of time. There is no rhyme or reason to the whole thing it is not linear in it's progression.

I would find out from the doctor exactly WHAT he considers an ok biopsy - could very well be a stage 2 ... that would mean you really didn't have as much time to watch and wait as you might like........everything is subjective and HE does not have this disease - YOU do.  Viral load means hardly anything at all you should be having your liver enzymes checked whenever you have a biopsy - they DO count.

Find out what grade and stage you are and then make an EDUCATED decision.  Don't just use blind faith and listen to a doctor - there have been MANY MANY mistakes we've read about that doctors have made in here.  Just because you have no symptoms doesn't mean it's not progressed and you do NOT want to wait until end stage liver disease to find out it's too late.

[nygirl7]

I never had any symptoms and was already stage 3 - just because it might take 20 years to get to stage 1 doesn't mean you can't get to stage 4 in just a short amount of time. There is no rhyme or reason to the whole thing it is not linear in it's progression.

I would find out from the doctor exactly WHAT he considers an ok biopsy - could very well be a stage 2 ... that would mean you really didn't have as much time to watch and wait as you might like........everything is subjective and HE does not have this disease - YOU do.  Viral load means hardly anything at all you should be having your liver enzymes checked whenever you have a biopsy - they DO count.

Find out what grade and stage you are and then make an EDUCATED decision.  Don't just use blind faith and listen to a doctor - there have been MANY MANY mistakes we've read about that doctors have made in here.  Just because you have no symptoms doesn't mean it's not progressed and you do NOT want to wait until end stage liver disease to find out it's too late.

[nygirl7]

I never had any symptoms and was already stage 3 - just because it might take 20 years to get to stage 1 doesn't mean you can't get to stage 4 in just a short amount of time. There is no rhyme or reason to the whole thing it is not linear in it's progression.

I would find out from the doctor exactly WHAT he considers an ok biopsy - could very well be a stage 2 ... that would mean you really didn't have as much time to watch and wait as you might like........everything is subjective and HE does not have this disease - YOU do.  Viral load means hardly anything at all you should be having your liver enzymes checked whenever you have a biopsy - they DO count.

Find out what grade and stage you are and then make an EDUCATED decision.  Don't just use blind faith and listen to a doctor - there have been MANY MANY mistakes we've read about that doctors have made in here.  Just because you have no symptoms doesn't mean it's not progressed and you do NOT want to wait until end stage liver disease to find out it's too late.

[nygirl7]

I never had any symptoms and was already stage 3 - just because it might take 20 years to get to stage 1 doesn't mean you can't get to stage 4 in just a short amount of time. There is no rhyme or reason to the whole thing it is not linear in it's progression.

I would find out from the doctor exactly WHAT he considers an ok biopsy - could very well be a stage 2 ... that would mean you really didn't have as much time to watch and wait as you might like........everything is subjective and HE does not have this disease - YOU do.  Viral load means hardly anything at all you should be having your liver enzymes checked whenever you have a biopsy - they DO count.

Find out what grade and stage you are and then make an EDUCATED decision.  Don't just use blind faith and listen to a doctor - there have been MANY MANY mistakes we've read about that doctors have made in here.  Just because you have no symptoms doesn't mean it's not progressed and you do NOT want to wait until end stage liver disease to find out it's too late.

[IAmTheWalrus]

Trish: You know me too well! :-)

I'll tell it again here. When I was diagnosed, I was told:

"HCV is a slowly progressing disease"

"You've had it for decades and it hasn't damaged much, it'll be decades more before it will progress to the point where treatment is indicated"

"Most people, and probably you, will die of something else, not HCV"

"Just get your blood work checked yearly and come back for another biopsy and ultrasound in five years"

Well, five years later, I get the biopsy and also a blood test for AFP level. The doctor calls me in and says "disease has progressed to stage 4 (cirrhosis),  AFP indicates primary liver cancer (HCC), treatment for the HCV is no longer an option because of advanced stage of liver disease"

Subsequent imaging revealed a tumor diagnosed as HCC. Surgeon said it was not possible to remove the timor because of the location and the advanced stage of liver disease. With HCC, my chances at survival for a year was not very good. My only option was the transplant list. Thank God this worked out for me.

I am not trying to scare you, but when I hear others get the counsel I stated above, I get a little riled. Now, for sure everyone's case is not the same as mine. But I believe it warrants caution.

Best to you,
Brent

[HypoKondriac]

I came to to hear know this!  That is why i asked IF I should be more concerned!

**But now for the million dollar question: what could have been done better?**  

What can i and others do to me more proactive in managing a disease that has been just about called "dormant" for 30 years?

Also - is it like a light bulb...there is no telling when one day it just decides to burn out as opposed to, say, a fan belt on a car which shows progressive signs of wear?

How often SHOULD I be getting biopsies?  What are the signs of impending danger - someone here said viral load is not...

[Texas714]

I've had it a long time too and never knew it.  When I found out in Jan 08 I also found out I have cirrhosis.  I felt fine.  What sent me to the dr. was joint pain...I thought I had RA for sure.  Some of the blood work showed elevated #s and one thing led to another and I found out about the HCV.  And another thing you need to know is many meds can harm your liver if it's compromised.  They had me on something for my joints and found the liver damage and told me to stop taking it.   If nothing else you should let your RA dr. know about the HCV.  Good Luck to you whatever you decide.

[HypoKondriac]

Thanks.  I STILL feel fine. have had it for 30+ years. ALSO have RA.  I take lots of meds for the RA and it was because of those meds and their effects on the liver that I discovered I have it.  My rheumatologist is who discovered the elevated liver enzymes and sent me to a gastro specialist for a biopsy that confirmed it. I don't know why you make the assumption that i would hide a diagnosis form any of my drs.

My rhumatologist and gastro have been in close contact and it has not been recommended that i stop my RA meds - as that would leave me bed-ridden and in pain.

that is NOT what I am asking!!

I am asking if there is any way to know ifg the HVC is progressing other than biospty and is 5 years often enough because that is what it currently recommended.

I was asking Brent if eh thought I should get one more often, Would that have made a difference for him, does he think and is there anything else that one can do..

BTW - other than RA I am very healthy. I am a vegetarian and don't drink or smoke. i have excellent cholesterol and blood pressure and exercise regularly, and am also under the care of nutritionist - and yes, he to knows of my HVC, as does my dentist and anyone who treats me.

[HypoKondriac]

so again...my question is how often are biopsies recommended???

[HypoKondriac]

so again...my question is how often are biopsies recommended???

[epiphiny]

2 to 3 years seems to be what most people are saying above.

[HypoKondriac]

THANKS! Is that for people ON interferon?  Cause I'm not any treatment at all for my HCV at this point in time since previous 2 biopsies have shown no liver damage.

[IAmTheWalrus]

Sorry so late on the response. I do not know the appropriate interval for doing a biospy. I just know that 5 years can be too long! Unfortunately that seems to be the recommendation from many doctors. Trish says 3 years. I would suggest maybe doing the next one after one or two years to help rule out an anomalous sample from the first one. There can be variances depending on the specific patch of tissue they sample. After two biopsies that showed similar results, I might be willing to wait longer between them. Unfortunately I don't have any real data to back this up. It is based mainly on my own experience. FWIW.

[IAmTheWalrus]

I reread and noticecd you have already had the two biopsies. It seems pretty drastic to have your liver stabbed every year. I would agree with the 2-3 year consensus.

[HypoKondriac]

I have reread this entire thread. And my attitude is changing from my first post now two month ago.

I was enjoying being in DENIAL. My doc was saying word for word what you quoted, Walrus!  Word for word! And I was hearing what i wanted to hear and just ignored all else!

As I recall my first biopsy in '01 was zero and my second on in '06 was "1" - mild.  He still was very nonchalant and told me not to worry.  He said: "If there was any medical or scientific evidence that worrying helped, I'd tell you to worry."

So I left and put it out of my head.

I actually considered my rheumatologist an old lady for being such a worry-wort!  

But now I'm scared.  I am afraid to hear what you guys need to tell me about preparing myself for treatment.  what is it - like chemo??  that's what you make it sound like.

But it is really a very tough call cause i did tons of online research on RA and CV and it the treatment could worsen my RA...not that it's good now!

In fact I think I will start a thread and post all the research I found for others who have both dx.  

Thank you all for keeping it real.I needed to hear all this...and more...

Keep it coming, please!  I made an appt to see the heapoltogist in two weeks...

thank you all for being strong and being here to help others...BLESS YOU all!

[IAmTheWalrus]

You already know that treatment is not easy and can cause lots of problems. Not treating can have consequences as well. The decision to treat and when should be carefully considered with your doctor. Seeing a hepatologist is definitely a good idea. I would be uncomfortable relying on a GP doctor. I hope I didn't scare you either way about treatment. It sounds like you are doing the right thing to research and see a specialist.  Best of luck!

Brent

[HypoKondriac]

i have been seeing a hepatologist since dx five years ago. he ordered the two biopsies i have had.  I have NEVER seen a GP fr this. Only my hep and my rheumatologist who treats my RA.

I have NO IDEA what to expect in treating the HCV.  Anyone care to educate me??

My hep says no need for treatment since i was only stage 1 at last biopsy two years ago.

[meki]

Seriously -- You have to weigh the circumstances with your own life.

Ask yourself some serious questions..

Like can you afford to take the time off
Can you handle being sick for an entire 2 or 3 years?
Can you handle possible permanent side effects?
Can you handle the drugs in your system?
Can you handle everything that comes with treating?

What weighs more?
Slowly dying from something you can kill - or the possible problems that come with it.

Like I said - mine went madly wild and made me seriously ILL in less than 10 years.

Because I know I was uninfected in 1994 --- and found out I had HCV after being tested for everything BUT HCV.

I was so sick for about 3 years.... it was unbelievable

And the TX was so very hard

But I'm starting to come back to my self --- some days are BETTER than EVER.......

Others --- well - they still stink sometimes - but mostly - I'm ok.

And I'm glad I did what I did........

Because I would be dead or dying now..........

But --- it's a hard road - and you HAVE to know the possible consequences.

Much hugs!

Meki

[pigeonca]

A number of people on this forum have RA coincident with their hcv - or they have other autoimmune diseases.  I had a form of scleroderma diagnosed about a year before my hcv diagnosis.

It's difficult to treat hep c when you suffer from any autoimmune condition, yet clearing the hepatitis virus can help cure the autoimmunity.  If you can get rid of hep c, you might get rid of your RA as well.  I had a very difficult time on tx, and my scleroderma flared, but in the end I was cured of both diseases.  You need to work very closely with a good doctor or doctors - both hepatologist and rheumatologist.  Teamwork is of utmost importance.  

Be well....
pigeon

[HypoKondriac]

I will not miss "work" per se for 2-3 year as i am already on disability as a result of the severity of the RA which has already effected  major organs.  But do i want to be SICK for 2-3 years, of course not.

*** How sick? what are we talking about? Does it effect everyone that badly? ***

Because I AM coordinating with both docs - the hepatologist has NOT suggested any treatment for the HCv as there is little to no fibrosis at this point in time.

I am either being very rational and taking this one day at a time and crossing bridges as I come to them - or in some denial. Hope it's the former, not the later. I believe today is all we have - any of us. We can either chose to enjoy the present or spend it worrying about future possibilities - or past "mistakes"...

But I also believe in BALANCE in all things spiritual and physical. I strive not to be too Polyann-ish nor too doom and gloom - a realist with a modicum of HOPE!  Without hope there is nothing.  Depression is such an easy hole to slide into... I have foundth best "cure" for that downward spiral (other than denial) is to take CONTROL.

So...I do my research.....and will do more now on interferon treatment and "be prepared" like a good little scout...

grateful for my new "friends" here... i shared with one "outsider" yesterday and she wanted to tell me that HCV was airborne and could be transmitted from doorknobs! Great - that would make us all lepers to be avoided at all costs!  Reminded me why i am so very selective who i tell.