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53 yr old male, can't decide if I should treat
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.
You need to have a liver biopsy to decide if you need to treat now or can wait. What you don't want to do is wait until you become cirrhotic and your odds of cure are way less and if you should decompensate your only option will be a liver transplant.
Ultrasound can't not tell if you have a normal liver or not. It can not diagnosis the extent of your liver disease. Unless you are very lucky after 27 years of infection many people can have extensive liver disease and not know it. When you have complications (fluid retention in abdomen and low legs, bleeding varices or hepatic encephalopathy) it can be too late to treat your hepatitis C.
Treatment is not torture dispute what you have heard. Dying of liver failure or liver cancer will be torture. Men are 3x more likely to develop liver cancer then women. So if you have early cirrhosis you need to be monitored for liver cancer.
See a gastroenterologist (digestive system specialist) or a hepatologist (liver specialist). And get a proper diagnosis. Only when you know the facts can you make an educated decision.
An ounce of prevention is worth a pound of cure.
Hector
Ultrasound can't not tell if you have a normal liver or not. It can not diagnosis the extent of your liver disease. Unless you are very lucky after 27 years of infection many people can have extensive liver disease and not know it. When you have complications (fluid retention in abdomen and low legs, bleeding varices or hepatic encephalopathy) it can be too late to treat your hepatitis C.
Treatment is not torture dispute what you have heard. Dying of liver failure or liver cancer will be torture. Men are 3x more likely to develop liver cancer then women. So if you have early cirrhosis you need to be monitored for liver cancer.
See a gastroenterologist (digestive system specialist) or a hepatologist (liver specialist). And get a proper diagnosis. Only when you know the facts can you make an educated decision.
An ounce of prevention is worth a pound of cure.
Hector
I am seeing a gastroenterologist, she is the one who read my ultrasound and told me things looked pretty normal, no enlargement just some shadowing. She also told me at this time she would be comfortable not doing a biopsy but recommends starting treatment. I am still very confused about the disease but I'm thinking if it hasn't progressed very far should I try to wait out new meds or should I start treatment. As I stated I run a very busy hotel, I work 10 - 12 hours 6 days a week. I am not sure I could do that on treatment and I can't afford to lose my job. I know I can't afford to lose my life either. I'm just really confused right now.
Hi- I am brand new to this forum, but would just like to say that when I was diagnosed 10 years ago a biopsy was suggested from a gastroenterologist I trusted. The test showed very little going on with my liver and the doc said "if you were my own sister, I would not recommend treatment". Wait until it get's better". He hated the treatment back then, "cure worse than the cause". But in 10 years it has gotten better. Because it seems to be OK for me to wait for even better, I am. Hopefully the treatment will get closer to being a cure (please God). I am currently getting active about seeing where I stand right now, but for now, I am waiting.
My suggestion to you is find a very informed gastroenterologist, hopefully with a special interest in liver disease, and talk to him about a biopsy. As far as I know, that is the only way to know where your liver stands. It may be worth it for peace of mind. Also- a good primary care doctor is great, but I know finding great gastro-doc you trust is paramount.
Good luck to you- let me know how it goes : )
My suggestion to you is find a very informed gastroenterologist, hopefully with a special interest in liver disease, and talk to him about a biopsy. As far as I know, that is the only way to know where your liver stands. It may be worth it for peace of mind. Also- a good primary care doctor is great, but I know finding great gastro-doc you trust is paramount.
Good luck to you- let me know how it goes : )
MY suggestion is you see an hepatologist ( liver specialist) instead of a GI. They are more experienced with liver disease.
You need to know exactly how healthy or not, your liver is before you make any decisions about doing treatment. You need to find out the stage of fibrosis.
Some experienced doctors can determine this without a biopsy though the biopsy is the best way to know exactly what is going on.
Once you know how healthy your liver is, you can decide intelligently whether to start treatment now or delay it.
For now, start educating yourself about the virus. Try checking out www.hepcadvocate.org or hepcchallenge.org
You need to know exactly how healthy or not, your liver is before you make any decisions about doing treatment. You need to find out the stage of fibrosis.
Some experienced doctors can determine this without a biopsy though the biopsy is the best way to know exactly what is going on.
Once you know how healthy your liver is, you can decide intelligently whether to start treatment now or delay it.
For now, start educating yourself about the virus. Try checking out www.hepcadvocate.org or hepcchallenge.org
Welcome to the forum.
I agree with Hector on all counts.
See a Hepatologist and get a liver biopsy and then you can make better treatment decisions.
My ultrasound was normal and my liver enzymes were only slightly elevated, but I have Stage 2 liver fibrosis. Keep in mind that while liver fibrosis often progresses slowly at first, it picks up speed as we age. People have gone from State 1-2 to Stage 4 cirrhosis in as little as 2-3 years. Fibrosis progression is not linear.
It is easier and more successful to treat people with less liver fibrosis ... as the fibrosis progresses people have the potential for more complications while treating and they also have a liver cure rate.
In addition, as you age you may develop a totally different disease that may exclude you from doing treatment for Hepatitis C at all. You want to do treatment while you still can.
Do you know what Genotype you are?
The current drugs regimes are no picnic but they are doable. A person would treat for 24 to 48 weeks depending on various factors and how the person responds to treatment. There are new drugs in trial phases but they are not on the market yet and no one knows for sure when they will be available.
Hepatitis C causes fatigue in a large number of people. Hepatitis C also causes extrahepatic manifestation in many people so it is not just the liver that the Hep C damages. There are a whole myriad of other medical problems that Hep C can cause. Here are 2 links to articles about extrahepatic manifestations of Hep C:
http://www.ccjm.org/content/72/11/1005.full.pdf
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
This forum is a great place to ask questions and obtain support. There are many knowledgeable people on the forum and most are very willing to respond to questions and offer support.
I agree with Hector on all counts.
See a Hepatologist and get a liver biopsy and then you can make better treatment decisions.
My ultrasound was normal and my liver enzymes were only slightly elevated, but I have Stage 2 liver fibrosis. Keep in mind that while liver fibrosis often progresses slowly at first, it picks up speed as we age. People have gone from State 1-2 to Stage 4 cirrhosis in as little as 2-3 years. Fibrosis progression is not linear.
It is easier and more successful to treat people with less liver fibrosis ... as the fibrosis progresses people have the potential for more complications while treating and they also have a liver cure rate.
In addition, as you age you may develop a totally different disease that may exclude you from doing treatment for Hepatitis C at all. You want to do treatment while you still can.
Do you know what Genotype you are?
The current drugs regimes are no picnic but they are doable. A person would treat for 24 to 48 weeks depending on various factors and how the person responds to treatment. There are new drugs in trial phases but they are not on the market yet and no one knows for sure when they will be available.
Hepatitis C causes fatigue in a large number of people. Hepatitis C also causes extrahepatic manifestation in many people so it is not just the liver that the Hep C damages. There are a whole myriad of other medical problems that Hep C can cause. Here are 2 links to articles about extrahepatic manifestations of Hep C:
http://www.ccjm.org/content/72/11/1005.full.pdf
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
This forum is a great place to ask questions and obtain support. There are many knowledgeable people on the forum and most are very willing to respond to questions and offer support.
I also agree with Orphanedhawk ..... I was typing while she was posting but I want to say I do agree with her also.
I agree with what has been said so far especially about the ultrasound. If you are on the fence with treating knowing how far your fibrosis has progressed is a great determining factor. Your genotype also determines the kind of treatment you would have (dual or triple).
As far as "shadowing" of the liver on an ultrasound:
"...A shadow area is thus an area which cannot be characterized by ultrasound. Your doctor telling you that you have a shadow on your liver says that there was something in the way of his ultrasound probe and will need to do further imaging to characterize this area"
https://www.zocdoc.com/answers/4279/what-does-a-shadow-on-the-liver-indicate
As far as "shadowing" of the liver on an ultrasound:
"...A shadow area is thus an area which cannot be characterized by ultrasound. Your doctor telling you that you have a shadow on your liver says that there was something in the way of his ultrasound probe and will need to do further imaging to characterize this area"
https://www.zocdoc.com/answers/4279/what-does-a-shadow-on-the-liver-indicate
Page 6 of this Treatment Guide lists some things that are helpful to know to decide whether to treat.
Genotype –These strains of HCV determine the length of your treatment and the dose. Knowing your genotype can help you assess the potential for a favorable response.
Viral load – This may be used to decide which medicine to use and to estimate your potential for a favorable response.
Baseline labs – These may be used to decide which medicine to use and to estimate your potential for a favorable response.
Liver biopsy results – You may or may not have this information. Some doctors perform routine liver biopsies, while others only biopsy certain patients. Liver biopsy results may be used to decide if treatment is needed at this time and to estimate your potential for a favorable response.
★¸¸.☆ Your medical provider’s reasons for recommending
or not recommending treatment.★¸¸.☆
Treatment regimen – What HCV medication does your medical provider want you to take? What is the dose and duration of treatment? Do you have concerns about the proposed plan? HCV genotype 1 patients
have longer treatment periods usually between 24 andv48 weeks. If you do not respond to the medications, treatment may be stopped after 12 weeks. Genotypev2 or 3 patients are usually treated for shorter periods.
Note: Treatment is based on the latest research.
If your medical provider suggests a treatment
duration or dose that is different from what you
expected, discuss this. Your provider might make
recommendations based on new information
Health history and a few other items are mentioned.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment_Decision_Guide.pdf
______________________
I encourage you to get a second opinion. With either a Hepatologist or a Gastro with experience treating Hepatitis C. Recommending that you start treatment (without even knowing what stage you are) when you express reluctance to me indicates the doctor at minimum did not present you with treatment options.
Here's a single page one from the VA web site:
http://www.hepatitis.va.gov/patient/treat/decisions-single-page.asp
Genotype –These strains of HCV determine the length of your treatment and the dose. Knowing your genotype can help you assess the potential for a favorable response.
Viral load – This may be used to decide which medicine to use and to estimate your potential for a favorable response.
Baseline labs – These may be used to decide which medicine to use and to estimate your potential for a favorable response.
Liver biopsy results – You may or may not have this information. Some doctors perform routine liver biopsies, while others only biopsy certain patients. Liver biopsy results may be used to decide if treatment is needed at this time and to estimate your potential for a favorable response.
★¸¸.☆ Your medical provider’s reasons for recommending
or not recommending treatment.★¸¸.☆
Treatment regimen – What HCV medication does your medical provider want you to take? What is the dose and duration of treatment? Do you have concerns about the proposed plan? HCV genotype 1 patients
have longer treatment periods usually between 24 andv48 weeks. If you do not respond to the medications, treatment may be stopped after 12 weeks. Genotypev2 or 3 patients are usually treated for shorter periods.
Note: Treatment is based on the latest research.
If your medical provider suggests a treatment
duration or dose that is different from what you
expected, discuss this. Your provider might make
recommendations based on new information
Health history and a few other items are mentioned.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment_Decision_Guide.pdf
______________________
I encourage you to get a second opinion. With either a Hepatologist or a Gastro with experience treating Hepatitis C. Recommending that you start treatment (without even knowing what stage you are) when you express reluctance to me indicates the doctor at minimum did not present you with treatment options.
Here's a single page one from the VA web site:
http://www.hepatitis.va.gov/patient/treat/decisions-single-page.asp
Here is some information I failed to include in my original post
genotype 1
viral load over 5,000,000
liver enzmes slightly elevated
I do not know all the rest of my numbers, I'm not sure what numbers I need to know.
I am going to schedule a biopsy. From what I am hearing that should have been recommended. My doctor did offer it but said it really wasn't necessary.
As a recently diagnosed patient of this disease I am just trying to find my way through all the information. I want to make an educated decision not one based solely on fear. I would like to thank you all for your comments any info or help I can get is greatly appreciatted.
genotype 1
viral load over 5,000,000
liver enzmes slightly elevated
I do not know all the rest of my numbers, I'm not sure what numbers I need to know.
I am going to schedule a biopsy. From what I am hearing that should have been recommended. My doctor did offer it but said it really wasn't necessary.
As a recently diagnosed patient of this disease I am just trying to find my way through all the information. I want to make an educated decision not one based solely on fear. I would like to thank you all for your comments any info or help I can get is greatly appreciatted.
I am glad you are scheduling a biopsy. I had one last year, and it was a piece of cake. They have an ultrasound machine so they can see where they are going.,and an Ativan drip, so it was pain free, for me, at least.
I had an Ultasound done before my biopsy, which said everything looked perfectly normal, but my biopsy had me at Stage 2, with grade 3 inflammation, so I did decide to treat.
One thing that confuses me: I only had to treat for 28 weeks. Unless you have cirrhosis, your G.I. wouldn't know if you were going to treat for 24~28 wks, or 48 wks, with the current meds used to treat Geno 1. There are guide-lines, so: if you began taking the meds, and cleared the virus by 4 weeks, and your werent cirrhotic, you would only have to do 24 or 28 weeks, depending on which protease Inhibitor you decide to use, there are two of them.
If your biopsy has you only at stage 1 or even 2, you could wait until next year, because an easier treatment is waiting to be approved. I did choose to Treat my Hep C at Stage 2 (stage 4 is cirrhosis) because my blood-work also had some abnormalities, such as my platelets slide below normal for the first time, since I had had Hep C, which was for twenty years.
I had an Ultasound done before my biopsy, which said everything looked perfectly normal, but my biopsy had me at Stage 2, with grade 3 inflammation, so I did decide to treat.
One thing that confuses me: I only had to treat for 28 weeks. Unless you have cirrhosis, your G.I. wouldn't know if you were going to treat for 24~28 wks, or 48 wks, with the current meds used to treat Geno 1. There are guide-lines, so: if you began taking the meds, and cleared the virus by 4 weeks, and your werent cirrhotic, you would only have to do 24 or 28 weeks, depending on which protease Inhibitor you decide to use, there are two of them.
If your biopsy has you only at stage 1 or even 2, you could wait until next year, because an easier treatment is waiting to be approved. I did choose to Treat my Hep C at Stage 2 (stage 4 is cirrhosis) because my blood-work also had some abnormalities, such as my platelets slide below normal for the first time, since I had had Hep C, which was for twenty years.
Since you are Genotype 1, your doctor would not know how long you would need to treat until you know the results of your liver biopsy. You have never treated before so you are considered treatment naive. If you have not progressed to Stage 4 liver fibrosis (cirrhosis) and you become undetectable for the virus at 4 weeks of triple medication treatment, you would be able to treat for 24 weeks if you were doing Incivek, Interferon, and Ribavirin, or 28 weeks if you are doing Victrelis, Interferon, and Ribavirin. If, on the other hand, you have Stage 4 liver disease or you do not become undetectable at week 4 (Incivek) or week 8 (Victrelis), then you would need to do 48 weeks of treatment.
As far as the new treatments, no one knows for sure when they will be available to the general public so. It could be next year but it also may not be next year. Plus, no one knows how willing the insurance companies will be to pay for the new drugs as it is projected that they will cost more than the current treatment. I just don't want you to misled into thinking there are any definite dates when it comes to the availability of the new drugs.
Based on your posts, it seems that your doctor is not real familiar with diagnosing or treating Hepatitis C. One thing you need to have if you are going to treat Hep C is someone who is knowledgeable and experienced in treating Hep C. It is better to get someone who knows what they are doing right away rather than having to switch to a new doctor during the middle of treatment. I just would not really trust anyone who thinks your liver is fine based on an ultrasound or who does not know the exact treatment regimens.
I originally had a less experienced gastroenterologist and I had to switch to a hepatologist mid treatment. I should have gone with a hepatologist from the start because my treatment would have gone much smoother and my side effects would have been addressed mush sooner and much more appropriately if I had been with the hepatologist from the beginning. However, because I was new to all of this when I started, I did not know any better, and I paid for that lack of knowledge with a lot of unnecessary misery from side effects that my original treating team had no clue how to assess or treat and were also reluctant to treat. I could not believe the difference in the treatment I received after i switched. It was like night and day.
As far as the new treatments, no one knows for sure when they will be available to the general public so. It could be next year but it also may not be next year. Plus, no one knows how willing the insurance companies will be to pay for the new drugs as it is projected that they will cost more than the current treatment. I just don't want you to misled into thinking there are any definite dates when it comes to the availability of the new drugs.
Based on your posts, it seems that your doctor is not real familiar with diagnosing or treating Hepatitis C. One thing you need to have if you are going to treat Hep C is someone who is knowledgeable and experienced in treating Hep C. It is better to get someone who knows what they are doing right away rather than having to switch to a new doctor during the middle of treatment. I just would not really trust anyone who thinks your liver is fine based on an ultrasound or who does not know the exact treatment regimens.
I originally had a less experienced gastroenterologist and I had to switch to a hepatologist mid treatment. I should have gone with a hepatologist from the start because my treatment would have gone much smoother and my side effects would have been addressed mush sooner and much more appropriately if I had been with the hepatologist from the beginning. However, because I was new to all of this when I started, I did not know any better, and I paid for that lack of knowledge with a lot of unnecessary misery from side effects that my original treating team had no clue how to assess or treat and were also reluctant to treat. I could not believe the difference in the treatment I received after i switched. It was like night and day.
Triple therapy is recommended for both Genotype 1a and 1b. There is Genotype 1a and Genotype 1b so be sure to check your labs and find out which one you are.
I admit I find it alarming your doctor is reluctant to perform a biopsy yet encourages you to treat. You are treatment naive (never treated before) so Bo is right: there is absolutely no way your doctor can predict you will treat for 48 weeks. Treatment duration is based on how you are responding the the meds. It could be as short as 34 weeks depending which protease inhibitor (PI) you select.
Your viral load is considered low however I would like to point out that the viral load is not indicator of how damaged your liver is. Neither does low liver enzymes. Just thought I would mention there are non-invasive measures of fibrosis with varying degree of accuracy. I am glad I had a biopsy.
Hopefully your biopsy will show your fibrosis as not very advanced. There are many people who decide to wait to treat with the new drugs that are in trials. The are Interferon-free, highly efficacious and have a considerably less harsh side effect profile. There are a few combinations in trials and so far the results are amazing.
There is debate when exactly they will be approved by the FDA but within the next few years is likely. Some overly optimistic predictions are by the end of 2014 but I will wait until I see that in black and white.
I admit I find it alarming your doctor is reluctant to perform a biopsy yet encourages you to treat. You are treatment naive (never treated before) so Bo is right: there is absolutely no way your doctor can predict you will treat for 48 weeks. Treatment duration is based on how you are responding the the meds. It could be as short as 34 weeks depending which protease inhibitor (PI) you select.
Your viral load is considered low however I would like to point out that the viral load is not indicator of how damaged your liver is. Neither does low liver enzymes. Just thought I would mention there are non-invasive measures of fibrosis with varying degree of accuracy. I am glad I had a biopsy.
Hopefully your biopsy will show your fibrosis as not very advanced. There are many people who decide to wait to treat with the new drugs that are in trials. The are Interferon-free, highly efficacious and have a considerably less harsh side effect profile. There are a few combinations in trials and so far the results are amazing.
There is debate when exactly they will be approved by the FDA but within the next few years is likely. Some overly optimistic predictions are by the end of 2014 but I will wait until I see that in black and white.
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.
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.
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?
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?
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.
It is relevant during treatment to see whether or not the treatment is working and how quickly.
Good luck going forward.
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
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
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
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
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
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
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.
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.
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.
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.
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 :)
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 :)
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.
Anything is possible with a gov run program.
Hope I'm wrong.
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.
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.
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