Do I have my head in the sand?

I was just daignosed with HCV and I have had the test for having either A or B which came back negative. I have also had an ultrsound done and no damage, whatsoever, to my live or any other organs appeared.  Comment was "beautiful". I am a very healthy 70yr old woman with no symptoms whatsoever.

I have always known that I did have a blood transfusion (2 pints whole blood) while going through a Partial Hysterectomy in 1982. Later worried about HIV but quickly realized I was ok for not having that. This only came up because of going to my Health fair and noticed the high ALT and AST. That prompted the Hepatitis test. I have read everything I could find and don't feel that going through the prescribed treatments, available today, would be good for me. The side affects and possible not working and all the rest of it, just don't sound good to me at this point. I was a social drinker and now will never drink anything again. Have never drank alone in my life. I feel like this is not the way to go and would rather wait for the new therapies coming up within the next couple of years. I do take a multi vitamin, also a product with milk thisltle in it and have changed my diet even more since this. Am I sounding ignorant or does anyone else feel the same as I do?


This discussion is related to hep c infection.

[orphanedhawk]

When did you have this testing done ? Was it recently?

What would guide me towards treatment would be the condition of my liver.
Although hep C can kill and is the number one reason for liver transplants in the US, it can also be benign. Many people die with it, not because of it.
If your liver is healthy, there is no reason to rush into treatment, in my opinion.

[willbb]

Hi maggie

Did you have the "HCV antibodies " test  or did you have an HCV/RNA by PCRT test to asertain whether or not you have active infection.

Approx. 25 % of people will test positive for HCV antibodies  who Do Not have active infection who were able to clear the virus by way of their own immune system.
If you have had the PCR and are positive there are many folks here who will be able to give you  good advice..

Welcome to the group..
Will

[Idyllic]

If the situation is as you described in your post on the "Expert Forum" then I am thinking you truly ought to go ahead and have the HCV RNA before you make any plans or worry:
http://www.medhelp.org/posts/Hepatitis/hep-c-infection/show/1710504#post_8089863

[crossroadsec]

I agree with others and will add that if there is any advance liver disease, you should go for it. I was asymptomatic until I was 53. A few minor issues I attributed to menopause... If you have become cirrhotic, then the damage can come hard and fast. Of course, every person is different.
I finished 43 weeks of harsh tx and am now living with a non inflamed liver that is grade 4 stage 4. With my current diet, meds, and lifestyle? I'm going for 20 more years instead of the 2 they offered me in 2010.
Your gastro or hepatologist should be able to give you more information. It took some convincing for them to allow me to treat. You've come to the right website for education and support. Many here have taken the new treatment with success.
Good luck!
Karen :)

[pooh55811]

I agree with everything the others have said.

If you had only the antibody test, then you will need an HCV/RNA by PCRT test to ascertain whether or not you have active infection.

If you have already had that test and you do, in fact, have active chronic Hep C, then you may want to get a liver biopsy to ascertain how your liver is doing. The ultrasound is not going to tell you as much as a biopsy. I would not base my decision on an ultrasound.

My ultrasound was perfectly normal. But, my liver biopsy was not. On doing the liver biopsy they found I had Grade 2 / Stage 2 (inflammation / fibrosis).

You said your liver enzymes were elevated. Liver enzymes may or may not be elevated with Hep C. Many have normal liver enzymes for decades. So you cannot base your decisions on the liver enzyme numbers.

Many discover they have Hep C by accident. Their liver enzymes were normal; they had no symptoms; they felt pretty normal. They Hep C was found. Because Hep C is suck a quiet, sneaky, and insidious little virus, many times by the time people find out they have Hep C they are already at Stage 3 or 4 liver fibrosis. There are only 4 stages (5 if you count 0). The other thing is, as we age, the liver damage/fibrosis speeds up. So, we may have gone for decades with no fibrosis, but as we get older we may go from Stage 1 or 2 to Stage 3 or 4 in a relatively short time (3-5 years).

If a person is at Stage 3 or 4 liver fibrosis it is much more urgent that treatment get started soon. That person may not have the time to wait for the new drugs, which probably won't be available for 3-5 years.

If you are truly positive for Hep C, then it is probably advisable to get a liver biopsy and base your decision concerning treatment on the biopsy results.

As far as age is concerned, I am 66 (65 when I started treatment). I accidentally discovered I was Hep C positive July 20011. I did not want to wait. I wanted to treat right away. At age 65, although I was/am fairly healthy and have no major medical problems,  I was concerned that I may develop a medical problem that would prevent me from treating or that would complicate treatment. I was also concerned that the liver fibrosis would advance to cirrhosis and End Stage Liver Disease (my greatest fear). I started triple medication treatment in September. I had to do 48 weeks instead of 24 weeks of treatment because I was still Detectable at week 4. I have now been Undetectable since week 8. I have 8 more weeks left. The treatment is no picnic, but it is doable.

Your Hepatologist should discuss the disease process, the treatment, the side effects, the consequences of not treating, etc. with you so that you can make an informed decision.

Best of luck to you.

[rambleon40]

I respectfully present a view contra to what most on this forum will tell you.  I pray the regulars will not read it if it will upset them.  I know some are in a circumstance where they feel they must treat - I wish them the best of luck and good things.  

I believe, however, just from perusing the data that is available and reading a bit between the lines, that you are just as likely to suffer lasting harm from interferon combination therapy as you are to be "cured" by it.  

At the age of 70, why would you want to subject yourself to all the medical care that they want to sell you?  Live life instead.  Eat very well.  (see, e.g. Pollan, In Defense of Food).

_____________________________________________________________

Some important links:


http://www.sprc.unsw.edu.au/media/File/Recovery_from_hepatitis_C_treatments.pdf


http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm


“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.

http://www.nytimes.com/2010/07/22/business/22hepatitis.html



CONTRA :



http://test.medpagetoday.com/PRDir/PressRelease.cfm?id=12614&sid=79&cid=15
_______________________________________________________________

A warning from a former interferon patient, meant to supplement the FDA approved warning:


"You contemplate a treatment (interferon combination therapy) that will interact with and alter your body's immune system.  The body's immune system is complex and not entirely understood.  Neither your physician nor the drugs’ manufacturers entirely understand how interferon combination therapy interacts with your body’s immune system. There is no guarantee that your immune system, once altered and modified by interferon combination therapy, will ever return to "normal.”

Some of the worst side effects of these drugs may appear after you stop interferon combination therapy.  

You will likely feel very sick while you undergo interferon combination therapy.  You will likely be irritable and tired.  Your brain will likely not function as well as it normally does.  It may be difficult or impossible to work while treating.  You should consider finding a trusted person to look out for your interests during treatment.

A significant number of people have lost the function of their thyroid from interferon combination therapy.  

A significant number of people report difficulties with high-level brain function during and after interferon combination therapy.  This is usually described as “brain fog.”  It may last well beyond treatment and cause long-term periods of disability.  

Arthritis (sore joints anywhere in the body), psoriasis (unsightly, socially isolating skin condition), lupus, multiple sclerosis (nerve affliction), and other autoimmune diseases may be induced by interferon combination therapy.  Sore joints (arthritis) occur fairly frequently.  The joint pains may or may not go away after completing treatment.  

If you develop arthritis or psoriasis, the drugs available to treat these afflictions are not good for persons with liver problems. The drugs used to treat arthritis or psoriasis are very expensive and also can also cause very serious side effects. The drugs used to treat arthritis or psoriasis alter the immune system by suppressing it to some extent.

There are many reports of nerve and vascular system damage from people who have undergone interferon combination therapy, particularly in the feet and sometimes the hands.  

Some researchers have determined that almost everybody who takes interferon suffers lasting side effects, but the majority suffer them at a sub-clinical level.

If you are unfortunate enough to suffer one serious side effect, you will likely suffer a number of others, also.   The FDA approved drug warnings do not at all make this clear.

Many but not all who have eradicated the Hepatitis C virus from their bodies through interferon combination therapy report that they do not feel as though they have been “cured” or that they have benefitted, due to the severity of lasting side effects.

Most gastroenterologists who treat Hepatitis C patients do not treat the side effects.  They may thus be unaware of the frequency, intensity and permanency of the side effects.  

Most doctors and the FDA and the pharmaceutical companies who make these drugs measure success by whether or not the virus has been eradicated.  They focus on the virus.  They do not focus on quality of life after treatment in determining success.

Neither your doctor nor the FDA nor the pharmaceutical companies who make the drugs used in interferon combination therapy know the percentage of people who serious side effects. No objective long-term study and follow-up has ever been performed and published.  Nobody can say what organ or part of your body your altered and modified immune system might attack following treatment with interferon.

The physicians, technicians and statisticians who performed the studies for FDA approval of these drugs were for the most part paid by the pharmaceutical companies who make and profit from these drugs.  No consumer or patient protection group has challenged the findings or conducted other studies.  

According to the CDC, the large majority (95% +) of people with Hepatitis C will die with it, not of it.

The following activities will harm your liver and increase your likelihood of death from hepatitis C: drinking alcohol; being overweight or obese; smoking; not exercising; eating too much red meat and fat; eating too many dairy products; eating too few green leafy vegetables, and; eating processed foods.  

On the other hand, if you: keep your weight down; avoid alcohol; exercise regularly; eat a diet rich in colorful fruits and green leafy vegetables, and; avoid foods such as fatty dairy products, bleached flours, sugar and factory and/ or fatty meats, you will significantly increase your overall health and aid your body in fighting Hepatitis C.

There is credible scientific evidence that herbal supplements such as milk thistle, dandelion root, horehound and green tea fight the symptoms and / or progression of Hep C help to some extent. Taken in moderation, these supplements are likely safe and will likely not cause permanent or lasting injury."

[frijole]

I think, as others have stated, if you have not had a PCR to determine if you have a viral load, you need to do so.  If you do, in fact have a viral load, I would suggest getting a liver biopsy.  The ultrasound can will not tell you if the liver is damaged.  After those two things are done you should be able to make an informed decision.

I am 64 and treating currently.  My doctor has treated patients older than I - one 78, I belive.

It is a hard decision but you don't know you have liver damage until it is too late.
frijole

[ceanothus]

I would guess that they probably would have ordered the HCV RNA test if they ordered an ultrasound, but you'd have to look closely at your tests to determine whether you've had that (also called HCV PCR) or not. If that is positive you really should have a liver biopsy before making any decisions. I'm like Pooh in that my ultrasound showed no damage whatsoever, a completely normal texture, right through all of them until I had major abdominal surgery for a different problem and the surgeon informed me that I had very bad cirrhosis, telling me my liver "looked every bit as bad as the ones they discard during transplant surgeries." Until that point treatment had been something I could do if I really wanted to, but it wasn't really clearly

[ceanothus]

Hate how the iPhone does that premature "send"! Anyway,suddenly treatment became very urgent (even though I still wasn't obviously sick). I'm 58 and I'm now on week 36 out of 48 in the triple tx with Incivek. The side effects are rotten, but not nearly as bad as liver failure would be, and I have hopes of coming out the other side of this with many healthy years ahead of me. It may not be the best route for you, but you can't know that with any degree of certainty until you have biopsy results to factor into your decision. Biopsies aren't fun but they aren't as bad as they sound, and they are very quickly over with. Best wishes for your good health and long life!

[Naya888]

Your arguments make lots of sense I heard of many of these post tx lasting  consequencies before .Every pt.  ideally should be informed about pros and cons of this tx incl these post debilitating symptoms.. That does not happen however.The whole US healthcare esp. Pharma are profit driven .I worked  in Europe and Canada in healthcare  where healthcare is still about patients not money. .But we all are individuals with ind needs and most people benefits greatly from this therapy with no consequences.I did great 10 years ago with dual therapy with nearly no side effects and no consequence except relapse of virus.This time 10 years older and with adding Incivek I already messed up my thyroid,wiped out my immune system like never before and stressedout my kidneys.I think everybody should read this .Thankyou

[maggiepie471]

I just had the tests a couple of weeks ago. And, I am reactive for the antibody test.  

[maggiepie471]

Thanks and yes I am rective--not sure of the number but I see the cut-off ratio as 11.00.  Thanks for the reply.

[maggiepie471]

I assume I did that and the number for the load is 2,850,000.  I just got the number today calling our lab. Thanks for the response.

[orphanedhawk]

Having hep C is not in my opinion the main reason to do treatment.
The reason is IF it is causing you liver damage.
Your viral load does not equal liver damage. People with low viral loads can have severely damaged livers while those with high ones, can have no damage. It may not make sense to us, but that's how it is.

At 70, if you don't have any liver damage, I don't know why you would want to go ahead with treatment at this time, especially since there are new all oral treatment currently in trial that look very promising.

[maggiepie471]

Thanks so much-you all have given my such good information. I know that next will be the liver specialist and I figured it would be the biopsy. I also realized that the ultrasound is only the outside of the liver and does not show what is going on inside.

I have already changed my diet, big time, and of course I will never touch an alcholic beverage as long as I live. I don't have any weight problem or and other medical problem-that is what is so mystifying. No symptoms at all.Being alone just does not sound good for me trying to go the treatment. I have read so much about the side affects and I am not comfortable with that. I am so glad to have joined this forum.  YOu all are the best.