53 yr old male, can't decide if I should treat

[JimS007]

I am a 53 yr old male. I have just been diagnosed with Hep C. I have not had a biopsy but have had an ultrasound which showed a fairly normal liver, some light shadowing. I have been feeling fatigued for a year or so. I figure I was exposed 27 years ago. I am having a hard time deciding if I should start treatments or wait until some new drug options surface. I am a General Manager of a very busy Hotel, I a worried if I get sick from treatment I will lose my job and my healthcare. How much will the year of torture extend my life. I have lived with this disease 27 years with very little damage, 27 more years would make me 80. Really don't know what to do or think.I am really still trying to wrap my head around all this. I welcome all and any advice.

[Kadeeta]

Dear Pooh ,I am reading here a lot of posts and I am so curious to ask you ,where can I read about your sx and how did they handled it after you switched medical team? do you have a journal where I could follow your traet and how did you manage sx ? Thank you very much if you will help me with those information .I am about to start a tx .but I have 2 good friends on tx and one of them at week 4 ,has very bad sx ..It makes me be afraid of starting tx.She has really bad sx with her brain ,cannot think properly ,,she is always dizzy especially after taking reba she is like a zombie for 8 h .She cannot work ,not even in her home ,That is terrible and makes so so afraid to start my tx.Thank you a LOT.

[Kadeeta]

Please Cgal,tell me please did you treat hep C before this trial?Thank you for yur time .

[Idyllic]

I have to say I am extremely impressed how you grabbed the proverbial bull by the horns with this ~ and in less than one months time. You have come a long way since your first post with that one doctor encouraging you to treat with no biopsy. Then the ultrasound and all the other little things. I really commend you on seeing this through and discovering on your own you are very early in the disease (or fibrosis) and most important: that you did in fact have an array of treatment options.

I am glad this worked out and I hope you keep in touch with this thread and let us know the outcome (in the long run) if (and/or when you ever decide to treat).

Best of luck

[dontworry_behappy1]

WOW that's great news :)!   Don't hear that very often on this forum.  You are in a great position and have choices.  The same choices people could have if they just got themselves tested at their yearly physical exam.  Catching it early is the key.  You now can stay on top of it.  Everyone needs an education in Hepatitis C and now your health will benefit.  

Happy : ) Best To You

[JimS007]

Well I just received the results of my liver biopsy. I am stage 0 with nothing more than mild inflamation. I meet with the liver specialist in June but I am now fairly certain I am going to wait to treat until the next batch of med's come out. I would like to thank everyone on here who helped educate me and I will continue to post updates as I receive them. Best of luck to everyone on here.

[deidrewan]

I want to congratulate you on the positive choice of a healthy lifestyle.  I feel I can understand your choice.  I have had HCV for 20 years.  Eight years ago I switched my diet to raw food to treat my diabetes.  It worked!  However, I had only shown minimal levels of increase in the virus so my doctors advised waiting for new clinical trials to be completed.  I wasn't worried. I felt great.  People said I was positively glowing with my new diet.  Fast forward 5 years.  I had a HCV flareup and a biopsy which showed stage 3 fibrosis.  My doctor said time to start treatment.  I was hoping for a raw food diet cure.  It didn't happen.  I still feel great with stage 3, but you can't see your liver damage and it may not correspond with how you feel.  Don't just trust your feelings.  I still test for diabetes to keep it in control.  So, I will start soon, fortunately I have the option of trying the new non-interferon treatment which has shown great success for genotype 1b.  Read the article above from the doctor about mortality from cirrhosis or liver cancer.  I would rather give it my best shot to be 100% free of the virus, than trust ultimately unconfirmed diets.  Raw food did not cure the virus after four years.  Good luck.  Keep researching.

[Cgal1957]

I totally agree with Hector.
Get the biopsy. Then you can make a more informed decision. Don't wait.
And please know that the year of torture is not necessarily the treatment route you have to take. The new drugs are cutting that time down to 3 months. Also no side effects to speak of. I know several people that are on trial with these new orals and continue to work at their jobs.
I myself am on an all oral Abbott study for 12 weeks. I expect to be cured of this disease by mid July.
Once you get more info about your status if you need to treat look into a trial.

[lrup1952]

Hi, there is great information above and I am still figuring all of this out so will only say that I am now in the 15th week of triple (geno type 1a) and I continue to feel really good and haven't missed any work except for appts. and days I take off.  There were several really tough weeks but overall it has been okay.  Each person reacts differently to the treatment and I have a lot of weeks left to go (treating for 48 weeks) so anything can change but so far so good.  Yes, I do have sx but because of advice from this forum have stayed on top of all of them.  

The incivik was no picnic but it wasn't as tough on me as it was on others.  I have had this virus for many years as well and my liver was still in good shape and my AST/ALT was normal, however I knew that at my age (60) and because of the length of time I had this virus anything could change very quickly and I didn't want to wait until I had other health issues to begin addressing this.

I know you will weigh the options with your treating team and make the best decision for you but I just wanted to say that not everyone is leveled by this treatment.  I have also turned my attention to taking better care of myself, eating better, continuing to walk (slowly of course), drinking plenty of water, getting more sleep and resting when I can't sleep.

I wish you the best!

[Dee1956]

Everyone above has given you excellent information, all the people here are so kind and knowledgeable and they give a little of themselves every day to help others as they were helped.  You will receive a lot of support here. I finished treating a little over a year ago and am now SVR.
It is really good that you are doing as much research as you can.
When I was diagnosed my blood work looked ok, slightly elevated liver enzymes, low platelets, it was assumed that I had plenty of time to treat.
Then the biopsy was done and it was found I had strands of collagen that were consistent with cirrhosis.  Then it became an urgent matter as I was told if I did not get rid of the HCV I had 5 to 10 years before needing a transplant.  
While it took me 30 years to get to cirrhosis, it was going to be a much shorter time til death.
You can also search on here, right next to where you posted your question you can search what ever you like and put the year in so you don't get old  information.
Good luck to you
Dee

[kathi007]

My Blood work is back and my results are fabulous...I went from 1.7 million to 1.2, my iron is perfect, ferritin is perfect, % of saturation perfect,so I am pleased. I know this is not for everyone but it's working for me. I know these drug companies and the Dr. kick backs are what drive a lot the "urgency" of having treatment but I will go with the natural way. I wish you luck in what ever you chose to do. And of course we are all entitled to our views and opinions, that's just mine.....  

[pooh55811]

Normally I would not feel the need to say this but, because of some of the above posts, I feel I need to state: Don't be misled into thinking that suddenly your Hepatitis C is going to disappear without the recommended and approved medical treatment. It won't. Also, do not be misled into thinking that natural herbs, aloe juice, proper diet, cleansings, etc. will cure Hep C. They won't. Obviously a person feels better if he/she eats properly and gets the right nutrition. Some herbs and supplements can help a person feel better. However, neither proper nutrition nor herbs and supplements nor cleansings will cure Hep C. If the goal is to get rid of the Hep C, then one needs to do the recommended and approved treatment, which is currently Interferon, Ribavirin, and a Protease Inhibitor for Genotype 1 and Interferon and Ribavirin for Type 2 and 3. There are new drugs in clinical trials which will be available at some point in the future.

[kathi007]

Hey Jim that's Cindee Gardner, sorry for the misspell

[kathi007]

I wish only the best for you! I was diagnosed last fall and chose the treatment. The treatment almost killed me. I guess I am one of those that can not endure it. My BP spiked at 165/110 so after a week of pure torture I had to stop. I have chosen the Eastern medicine which is natural herbs with proper diet. I feel fantastic. I will get my blood work back this week and let you know of my progress. I had the liver biopsy and it was painful but worth it to know exactly where I am at with this. I know everyone is pro triple treatment and it may work on some but as for me, I have to go with nature. I cleanse everyday and nourish my body with only healthy fruits, veggies, herbs and plants. Aloe juice everyday. I feel better than I have in 20+ years. Do the research and check out Dr. Cyndi Gardner, she's in PA. I have a different outlook on things as it has changed my thinking.
Hope this helps, Kat  

[quayle]

I've lived with mine longer than I've lived without it sounds strange to me too,30 years,Hector is pretty right,you have to be vigilant and a biopsy is the only gold standard you can go by,But as my doctor said if the get a good bit of liver it can be deceiving,I have at least three people in my life I know personally,that had it for years one day no more,disappeared,a couple of others too,but that's
few compared too the many you really have to do every test on the liver cts,ultrasounds,MRIs get as much information you can everything,and then talk to a Heptologist,and he may just say that with the evidence in front of him he honestly believes you can wait a few years as I'm sure treatments will be much better,and then he may just say no I think you should go ahead and treat you really need to collect all the data and evidence based medicine at this point,hope it helped good luck.

[copyman]

Wanted to add that starting treatment this year may have other benefits. Starting treatment now before Obma care begins 2014. Get "grand fathered" in before the change.  After that no one knows what the health care will be like. Ins co's, exchanges, etc may refuse certain patients because the cost of treatment drugs are so expensive. Not saying it will happen but what if the goverment refuses someone with stage 4 fibrosis or bad cirrhosis from treating! Saying the odds of cure for this risk group are low so they do't get to try.
Anything is possible with a gov run program.
Hope I'm wrong.

[Idyllic]

It depends what the reference interval is on your labs.
I know on mine (with LabCorp) the reference interval for both ALT and AST is 0- 40. Having said that liver enzymes aren't really all that telling when it comes to Hepatitis C. They can be deceptive and an unreliable indicator.

Good luck with your biopsy. I think it is a wise move rather than leaping right into treatment :)

[pooh55811]

Your Genotype 1a is the most common Hep C genotype in the US. Here is a link that will help explain the Genotypes:

http://www.hepatitis-central.com/hcv/genotype/explained.html

Normal ALT is 10-40 so yours is only slightly elevated. This is good, but it is not necessarily indicative of the amount of liver damage that you have. Your liver biopsy will tell you where you are in terms of liver fibrosis.

These links may help in understanding the tests.

http://labtestsonline.org/understanding/analytes/liver-panel/tab/test

http://labtestsonline.org/understanding/analytes/alt/tab/test

http://labtestsonline.org/understanding/analytes/ast/tab/test

"The alanine aminotransferase (ALT) blood test is typically used to detect liver injury. It is often ordered in conjunction with aspartate aminotransferase (AST) or as part of a liver panel to screen for and/or help diagnose liver disease. AST and ALT are considered to be two of the most important tests to detect liver injury, although ALT is more specific than AST. Sometimes AST is compared directly to ALT and an AST/ALT ratio is calculated. This ratio may be used to distinguish between different causes of liver damage."

Sounds like you are moving right along. Keep us posted. Best of luck.

[JimS007]

I would like to thank everyone for all the information and advice that you have shared with me. I have scheduled a biopsy and will post the results once I receive them. I also have a few more of my numbers to share.

I am Genotype 1A
ALT is 43
AST is normal

Not sure what those numbers are or mean but I just got them from the Dr.

[Willy50]

I agree w/ previous posts.  I would strongly consider changing doctors.

Strongly agree you need a biopsy.
Strongly disagree you should skip a biopsy and decide to treat w/out knowing your stage.

I suggest to you that in all likelihood your current fatigue is not going to improve. It is the shape of things to come and could foretell more serious problems.  FIND OUT WHERE YOU ARE, and from a qualified expert.

New treatments are coming which you will be able to work and treat.  Unfortunately the current treatments do not always make that possible for everyone.  Better ones are about 2 years out.  If you can wait they may well be worth the wait, but you must first find out your staging and other current health issues.

By the way.....I always assumed I may have been infected in the 70's, but recently saw perfect LFT's in the 90's.  Do not assume a linear rate of damage progression based on an infection date.  There are people here who progressed quite quickly and inexplicably.

(great article ceanothus!!)

willy

[dontworry_behappy1]

I know the job of a GM and why your concerned. A least you have a room where you can escape at work and that's a plus.  Get a biopsy and see a specialist.  Clearly, by what you have said, your GI isn't experienced in
Hepatitis C Treatment.  You have got some great advice from posters above.   I can see how the information can be overwhelming.  Focus on getting a
biopsy so you know where you stand.  Everything else comes after the finds
of your liver biopsy.
Best To You

[ceanothus]

Hi Jim, I finally found the article I was looking for, and I was so impressed with it that I'm going to copy and paste it:

A 'Killer' of a Reason to Treat Hepatitis C 
Feb 15, 2013 

Hello. I am Dr. David Johnson, Professor of Medicine and Chief of Gastroenterology at Eastern Virginia Medical School in Norfolk, Virginia. 

Hepatitis C and treatment for hepatitis C have been an ongoing issue, and we have never been in a more exciting time for eradication of hepatitis C virus. Unfortunately, many patients with hepatitis C progress to develop cirrhosis. It is estimated that 25% of patients in the United States with hepatitis C have cirrhosis. An estimated backdrop is about 3.5 million patients. By 2040, it is estimated that this percentage will go up to 45% if left untreated. This is a real problem, not only because of the consequences in our medical care for these patients, but because of what we should do for them now. It has never been more exciting to treat these patients, but we are often held back by patients with cirrhosis or fibrosis, and we think that they may not tolerate the treatments as well or that they are too end-stage, that they don't really need to have these treatments. 

An exciting article was just published this past month in JAMA.[1] It is a study that looked at patients with cirrhosis or bad fibrosis. All patients had hepatitis C and liver biopsies, which were classified by an Ishak score. The Ishak scores ranged from 4 to 6. What that means is that these patients had significant scarring of their liver and, in fact, most of the patients had cirrhosis; 27% of patients had an Ishak fibrosis score of 4, 19% had a score of 5, and 54% were very cirrhotic with a score of 6, which is the end of the fibrosis score. 

All patients had hepatitis C and were entered into an evaluation. From 1990 to 2003, 530 patients were treated at 5 centers around Europe and Canada. They were followed for the endpoint of all-cause mortality. Secondary outcomes were liver-related mortality, liver-related failure, hepatocellular carcinoma, and need for transplant or decompensation. These endpoints were fairly significant. They looked at sustained virologic response (SVR), which was defined as the absence of a virus for 24 weeks after treatment. It would be a sustained treatment effect, and clearance of the virus would be expected to be maintained. The SVR at 24 weeks would be no virus. 

The timeline for this study is 1990 to 2003, so many of these people were receiving monotherapy, pegylated interferon treatments, or consensus interferon treatments. A smaller percentage of patients received combination therapy with ribavirin. Only 34% of these people actually had an SVR. Of the patients who had an SVR, the all-cause mortality was 8.9% at 10 years. Of the non-SVR patients, the all-cause mortality was about 27%. The mean follow-up was 8.6 years, so the 10-year mortalities were calculated if they were available and there was a reasonable endpoint. If you put the numbers for mortality together and look at 8.9% vs 27%, the number needed to treat to prevent 1 all-cause mortality is 6. 

In my 36 years of being in medicine, I have never seen such a number needed to treat for an endpoint that is as strong as mortality. With pharma trials, we get excited when we have a number needed to treat that is 10-20, a medium range of good news for pharma trials. Here, we are talking about mortality. A number needed to treat of 6 is unheard of. If you look at hepatocellular carcinoma, the number needed to treat here was 5. The number needed to treat for decompensation and liver transplantation was 4. Cause of death, liver failure, was 4. We have never seen this type of number before for the endpoint of mortality. 

Interestingly, they also found a cofactor that was a subset risk, which was genotype 3. If you are genotype 3 and not treated, then you are 2 times more likely to have all of these consequences. We do know that genotype 3 tends to be a much more rapidly progressive disease, although genotypes 2 and 3 are easier to treat. If you don't treat them, they tend to more rapidly progress to fibrosis and cirrhosis. They also tend to be more associated with hepatic steatosis, an independent risk factor for hepatocellular carcinoma. For patients who are subset genotype 3, we need to be very germane in pushing this into a new paradigm shift of prevention of death and much less decompensation and all the consequences of cirrhosis. The endpoints here are so strong for all-comers and even more so for genotype 3, that we need to be treating these people. 

Very interestingly, there is a parallel story related to coinfected patients. A paper was published earlier in 2012 regarding HIV and coinfection with hepatitis C.[2] The study had 19 patients who had fibrosis or advanced fibrosis. The numbers were not quite as implicit as the study we just talked about, in which all the patients had fibrosis or advanced cirrhosis. These patients had coinfection, and the number needed to treat was very much in parallel with what we talked about for hepatitis C infection alone. In fact, no HIV/HCV patients who had fibrosis on their biopsies had any related mortality once they had an SVR. 

Where are we headed with this? I think we are headed to a discussion with patients with hepatitis C and fibrosis or cirrhosis. If you have ever been hesitant to treat these people, get over it. These patients need to be aware of an endpoint that is so strong with mortality, that they need to be treated. I am not talking about waiting for new therapies. They need to be treated now. With an endpoint of mortality and a number needed to treat that is 4-6 for mortality, liver mortality, and hepatocellular carcinoma -- if you can't convince them at that point, it's never going to happen. Don't sit back on these patients. We have never seen a number needed to treat with an endpoint of mortality that is this low. Oncologic interventionalists would be ecstatic if they could have a cancer regimen that would prevent cancer or treat cancer with this type of number needed to treat. 

Get off the dime. Look hard at your cirrhotic and fibrotic patients. Don't wait for new therapies. In the era of triple therapy with boceprevir, telaprevir, and some of the new protease inhibitors on the short-term horizon, we have an absolute indication and an obligation to treat our hepatitis C patients with fibrosis and cirrhosis, in particular the hepatitis C patients who are genotype 3. 

Look at this article. Think about it. Don't forget the HIV-coinfected patients as well. It gives you an interesting discussion next time you have one of these patients in the clinic. It is an exciting time for hepatitis C. Let's make a real difference. I look forward to our next dialogue in the prevention of cancer. It's your opportunity now to take this back to your patients and apply it. I'm Dr. David Johnson. Thanks for listening. 

http://www.medscape.com/viewarticle/779068

[orphanedhawk]

One comment concerning viral loads, the amount of viral load does not equal the amount of liver damage. You can have a low viral load and have advanced cirrhosis, and conversely have a high one and no damage.

It is relevant during treatment to see whether or not the treatment is working and how quickly.

Good luck going forward.

[ceanothus]

Wow, you've gotten a ton of excellent advice already, so I'm just seconding (or thirding or fourthing) it. I'm very glad you are deciding to have a biopsy. My own experience was that I had one biopsy very early on that showed "minimal activity" (it was so long ago that they didn't even have the staging setup they now use, but it was probably stage 1). After that I relied on ultrasounds and blood tests for the next 15 years, and they all kept indicating that my liver was doing just fine, no signs of damage. Then I had abdominal surgery for a choledochal cyst, performed by the head of liver transplant surgery at Stanford, and I awoke to the bad news that I not only had cirrhosis, but that my liver looked as bad as the ones that are discarded during transplants. The surgery itself nearly sent me into decompensation, but they did pull me back from that brink. Oddly enough, once my records showed cirrhosis, now all of a sudden the ultrasounds could see it too - even though the most recent ones before that had still shown a pretty smooth texture. It made a huge dent in my faith in the power of ultrasounds. I think in terms of liver texture they see what they expect to see, though I think they do a better job at seeing any tumors. I'm now SVR after having completed 48 weeks of triple tx (which, btw, is harder in terms of side effects AND in terms of lower success rates once you have cirrhosis), and I'm really glad I finally got rid of the virus.

There was a fabulous article posted here a couple of months ago, written by a doctor and encouraging other doctors to treat their HCV patients now rather than waiting. I can't find it now but I'm hoping someone else can post a link to it. I've looked for it a couple of times lately, as it seems really useful in addressing this subject. Anyone have the link?

[Idyllic]

Hey another member was kind to point out that 5 million is not exactly considered a very low viral load so I thought I would mention that. Plus since your doctor mentioned a treatment duration of 48 weeks I am guessing she was considering a PI called Incivek. The minimum treatment duration for you if you treated with that drug (and a few other factors are in check) would be 24 weeks.

I also would like to add that based on what you said it does not sound as if your doctor considered (or is considering) the other PI used for triple therapy. Anyway, I hope you get the idea that rushing into treatment without considering other factors seemed like an unnecessary rush.