Significance of stage 2 diagnosis

[Ibis]

I was recently diagnosed with hepatitis c.  I am 54 years old and I probably contracted the disease more than 30 years ago.  I have no current symptoms.  According to the liver biopsy its at a stage 2 moderate fibrosis and grade 2-3 moderate inflammation.  My doctor is recommending treatment.  What I'm wondering is if anyone has any information about the likelihood, if it has taken 30 years to develop to a stage 2, that it would progress to cirrosis of the liver if left untreated.  What I'm wondering is does that mean it is slow progressing?  Or, does that mean that there is a strong likelihood that it would progress to more serious liver damage if untreated?  What I'm trying to do is weigh the benefits/side effects of treatment with the risk of developing more serious liver damage if untreated, but I just don't know what the odds are, and what the significance is for it to be at a stage 2 after 30 years.  Can anyone shed some light on this?.

[sfbaygirl]

I agree with Jim. I treated for 47 weeks before ending up in the hospital with ischemic colitis, and lots of other things. Left the hospital 3 weeks later on blood thinners for life. That was in March this year.  I stopped tx. In August I was back in the hospital with colitis all the while having bouts of terrible leg, arm, back, bone and joint pains.  I was just dx'ed with fibromyalgia, which could have been caused by the tx drugs as well.  I was between a stage 1 and 2 and relapsed. I would never do this tx with the SOC tx that is interferon and ribavarin again.  I do regret doing the tx as I am left with awful diseases that will be with me for life. I am not trying to scare you,  but given what I went through during and after tx, I would wait for a better way to tx Hep C.  I am sure you will get lots of opinions, just wanted to give you mine.  Good luck and keep posting!

[jmjm530]

First of all, what genotype are you? This should be one of the most important factors in your decision.

If you're genotype 2 or 3, then treating now is a reasonable option, although one could still choose to "watch and wait".

However, if you're genotype 1 -- the hardest to treat genotype -- then given your stats I would not treat at this point with stage 2 (moderate) liver damage.

As you may or may not know, exciting newer drugs are in the trial pipeline that promise better cure rates in half the time. FDA approval of the first wave will hopefully be within the next couple of years.

I suggest before you make any decisions that you take a weekend -- not five or ten minutes or an hour -- but a weekend, and backread threads both on this forum and the main forum here:
http://www.medhelp.org/forums/hepatitis/wwwboard.html

This will give you better idea of what treatment involves, including the side effects both during and after treatment. While some report feeling better after treatment, many report feeling worse. Treatment can be very difficult and take a big chunk out of your life -- it did to mine. You say you have no symptons now, so weigh the decision very carefully.

You should also keep in mind that since most here are treating --  or have treated, or are going to treat -- that there is an understandable pro-treatment bias in this forum. Those whose doctors told them to watch and wait would probably be less likely to show up here.

I decided to treat at age 58 when I was told I was between stage 3 and 4. I am now cured for 1.5 years and grateful. But based on everything I know and went through -- I would not have treated if I were a stage 2. Either then or if I could turn the clock back now.

All the best in whatever you decide. As a stage 2 you could reasonably go either way. But do take the time to make an informed decision.

-- Jim

[FloridaMouse]

I did 48 weeks of treatment from May 19, 2006 through April 13, 2007 and managed to make it to work at my desk job for 90% of the time.  I am/was a paralegal by profession and did have some difficulty with concentration but managed with the use of notes and such.  I did come down with rheumatoid arthritis 2 months before I finsihed treatment and started missing time then.  I didn't know it was RA until after I finished treatment.

I did wind up quitting my job on April 17, 2007 due to harassment/discrimination issues from my Hep C.  I got my RA diagnosis 2 weeks after I quit and applied for disability based on my Hep/liver damage and my RA (still fighting the system at the moment).

I just started another round of treatment yesterday for 72 weeks this time.  I'm really glad I'm not working this time and fortunate enough to have a husband to support me.  I truly do not think I would have made  it through work the first time if I had had a more physical job.  

But remember, everyone is different and working on treatment is possible.

Good luck to you.

Mouse

[CMcH]

I just had a liver biopsy a few weeks ago and found out that I was stage 1 level 1. I am type 1A and have probably had this 30 years or so. My VL is only 240,000 and ALT is 48. So I must be slowly progressing. I have been holding off on tx for about 15 yrs. and I have decided to start TX after XMAS. The reason why I have finally decided to TX is the last 1 1/2 yrs or so I have noticed a steady decline in all my abilities. At first it was attributed to menopause then the joint stiffness was getting so bad I asked to be checked for Lupus and I was diagnosed with RA. The Rheumatologist just blew me off as soon  as he found out I had Hep C. I am a very active person and when I get injuries they don't seem to heal anymore.
I know TX will probably make everything worse for a while but I want this monkey off my back. I want to be able to go to a doctor and not have everything blamed on the Hep C. Also now I feel I am in as good a position family and work wise to take on this endeavor. Last year I almost got a divorce and thought OMG I can't do this as a single mom. So I guess this will be the true test of the strength of my marriage. The family is used to me doing everything but my girls are old enough now to help out some. My co-workers are supportive and know I work hard so I think I can get away with some slack. I have only told my boss so far but will probably let some others know if it affects my work.
Some people would think I'm crazy to TX with such low stats but I think I will have a better chance if I do it while I am strong and healthy. I want to be in good shape as I age and be able to play with my grandchildren when I get older.
I hope I don't regret this decision, I'm scared to ****less.
I posted this to let you know we all have different reasons for making this difficult decision.

[pigeonca]

I might add to Kittyface's remarks that, over a year before my diagnosis with hcv, I developed an autoimmune disease which became worse on treatment but - once I achieved SVR - seems to have calmed down or even - I hope - vanished.  Nobody knows for sure about these things, but it seems that my naturally produced interferon, as well as pharmaceutical interferon, didn't agree with me.  If I hadn't had hcv, I wouldn't have been making all that interferon in my body and all would have been well.  And I too, like Kittyface, am a person of normal weight and diet with type 2 diabetes.  So yes, it's not just the liver that's affected by hcv.

[kittyface]

Hi,

I was diagnosed in 2004, infected in 1982 (transfusion, like you).  Over the past 3 years I've been an avid reader of anything related to HCV and tx. Having mild liver damage, I certainly found many reasons to delay treatment.   However, HCV not only affects the liver, as I found out last week.  I was diagnosed with Type II diabetes having no risk factors -- genetics, weight, diet, etc.

According to hepatitisresearcher, a most esteemed scientist who regularly contributes to this forum, HCV inflames the pancreas causing insulin resistance (diabetes).  The pancreas is not the only organ HCV affects.  HCV affects the total body and raises the risk for other diseases among them lymphoma and cryoglobulemina.

Where I was once in the "watch and wait" camp, the diabetes dx has compelled me to take action and start tx in January.  Tx is not without risks, too, so you're wise to weight the risk/benefits.  However, the risks associated with HCV lie silently and as others have said, it's impossible to predict your rate of progression and what other diseases may arise.

This is just one story in the concrete jungle.  We've had many pro/con tx discussions -- you can find them by doing an archive search.  In the end, after you've crunched all the numbers, you may have to go with your gut as mentioned above because there's so many variables.

Good luck,
Kittyface

[pigeonca]

Another thing to consider is your age.  The longer you wait to treat, the older you will be.  From my year and a half hanging out in this forum, I'd say older people have - on average - more difficulties with treatment than younger folks.  But then again, it might be better to wait for some of the new drugs about to be released or in clinical trials.

[Ibis]

Thanks to everyone for your comments.  They are very helpful as I try to decide what to do.  Rose, yes I am postmenopause and so your comment that the disease might progress more rapidly post menopause is of interest to me.  The other concern which goes to Jasper's point is I can't really afford to take time off work right now, and while I could take a day or two of sick leave here and there, for the most part my work schedule is pretty demanding and I cannot take an extended leave, so these are all factors to consider.  I understand that the degree to which the side effects interfere with people's ability to continue working varies a great deal from person to person.  What has been the experience of other going through treatment?  Were you able to keep working?

Ibis  

[tahoeunicorn]

I am Grade 3 Stage 4 don't know my VL yet gonna ask  Dr. Friday. I am 45 the Docs thinks that I recieved Hep when i got a blood transfusion when i was born due to rh- factor. What my Dr. said was that it takes appox 10 years to go from one stage to another. Not sure bout his definition anymore.
Good Luck ,
Lynn

[hairtamer]

I am grade 2 stage 2 and VL was at 11,900,000 before tx.  I was diagnosed in '99 minimal fibrosis VL 200,000.  I have had hep c since '75.  I was starting menopause in '99 also.  I receive a newsletter from Liver Hope (liverhope.com),  and in their Jan '05 letter it had an article about the progression of fibrosis in women postmenopause with and without HRT.  Women on HRT had a slower progression of fibrosis.  I chose to do without HRT and I progressed, I thought rapidly.  So that made my decision to tx.  Are you post menopause?
In Jesus, the Reason for the Season,
Rose

[FloridaMouse]

I've often heard that as you  progress to the latter stages of liver damage that the progression between the stages narrow.  I was just up at Shands and although I'm little more advanced in my damage this is what they told me about my progression.

I'm a Stage 3, Grade 3-4.  I was told that I can expect to become cirrhotic (Stage 4) within the next 5 to 7 years and that it will become life threatening within the next 7 - 10 years.

Being at a stage 2 you are kind of sitting on the fence so to speak and could go either way.  You should take into consideration other factors such as how old you want to be when you go through treatment, are you financially able to deal with treatment and possible having to take a little time off from work, any kids in the house right now, are there family obligations that require a larg portion of your time, etc.

Good luck in whatever you decide.

Mouse

[geterdone]

I am stage 2 grade 2 probably for 30+ years. I also wasn’t sure back then (04) whether to start treatment back then or wait until a newer drug came out but here it is almost 4 years later and they are still on the drawing board or in trials. I also had doctors explain that this disease has no rhyme or reason but kept an eye on its progression. I guess the deciding factors were many but the motivation came from the blood work during that in between time.

My reason for starting treatment was due to the fact it was progressing (not sure how to quantify its meaning by numbers over time or even scientifically) but I used the following;

I had a liver biopsy in 01/04 grade 2, stage2, with a vl load of 4,150,000 copies divided by 30 years (rounded), would equal to about 138,333 replications per year over that time.

Now, three years later 01/07, Lab Corp. HVC QuantaSure Plus (serial) showed that there was an increase of 550K or over the past three years and the replications had increased to 183K per year from the 138K over the past 30 or an increase of 45K per year.

Others may look at it differently but it was enough motivation for me to start treatment.

Hope this helps

Jasper

Ps. If you should decide to treat in the near future make sure your ducts are in a row as far as time off if working.

[charm27]

I am stage 2 grade 2 probably for 25 years. I also wasnt sure whether to tx now or later. I had doctors explain that this disease has no rhyme or reason. Just because its a 2 after so many years doesnt necessarily mean the progression will stay that way. Unfortunately no one knows the answer to our question. I am txing now. You just have to listen to your gut and do what you think best for yourself.
Good luck
Charm27