Aa
Stage 3/4 with neg. HCV...Two years later positive HCV screen
Two or three years ago I underwent an ultrasound to check the size of an AAA. After the scan I was told I had an enlarged liver and spleen. Bloodwork showed liver enzymes in the normal range and negative hepatitis tests. However I was sent for a liver biopsy which showed stage 3 fibrosis/stage 4 cirrohsis. The pathologist was unable to determine what disease or condition caused the damage and determined whatever caused it was in remission. Since that time I have had several symptoms related to liver disease and was once again tested for HCV. The screening came back positive for HCV antibodies. I am going for further testing this week. During the past two years my doctors have done nothing as far as treatment for my existing cirrohsis. I am concerned that the HCV will only increase my liver damage especially now that I am having symptoms. The strange thing is that the enzymes are still normal but there are several physical symptoms of HCV and liver disease. I do not drink due to severe alcohol intolerance. I did drink some in my late teens and early twenties but I always disliked drinking because of the illness I suffered after drinking. Two or three drinks were enough to make me ill for two or three days. I am at a loss and confused about the cycle of events. Has anyone had a negative Hep C screen with cirrhosis only to find out later that Hep C is positive. According to my biopsy results and my physician the cirrhosis was present years before I tested positive for the HCV. I find all of this hard to believe. Are false negatives/positive on HCV screen possible? Has anyone had a diagnosis of stage 3/4 and years later learned of the positive HCV screen? The normal blood tests with the physical symptoms of extreme fatigue, spider veins, peripheral neuropathy and shortness of breath prompted my doctor to retest for the HCV. I would appreciate comments from anyone with similar experiences. The series of events seem backwards in this case and I am puzzled. Thank You....
That's great news. Thanks for the update. Good feeling being virus free, good luck in your future!
Hello Everyone, I posted on this forum back in May 2013 with questions for the members and concerns about treatment. I just want to say thank you to all those that helped me and answered my questions. I started my treatment in August 2013 and completed treatment in February 2014. I had a very rough time with the treatment and especially with the Interferon. I was put on three medications, Interferon, Ribavarin and three months of Incivik. To make a long story short I am now HCV free. The medicine worked extremely quickly. I was virus free after 4 weeks of the treatment but had to continue the full 6 month treatment. I was shocked that it worked so quickly but my doctor had told me before the treatment that some people were virus free after a month. I had very high levels of 36 million. Over the past two months I have regained most of my strength and feel better than I have in years. Once again I just want to say thank You to everyone.
Hello you are very welcome. I am hoping that many of your problems will cease with tx for HCV
I received 2 false negatives and finally a positive in 2004, no one looked at my blood work so it was not until very late in 2007 I was finally diagnosed.
It is awful not to find out for so long.
During that time I was found to be diabetic and had low thyroid.
I was sent to a rheumatoid doc and she said my pain was HCV related.
I wish you the very best, please keep in touch.
I received 2 false negatives and finally a positive in 2004, no one looked at my blood work so it was not until very late in 2007 I was finally diagnosed.
It is awful not to find out for so long.
During that time I was found to be diabetic and had low thyroid.
I was sent to a rheumatoid doc and she said my pain was HCV related.
I wish you the very best, please keep in touch.
ceanothus...I had tried to post a reply to your comment Wednesday night but it has not posted. I know for certain I replied and thanked you for your time making the reply and the information. I have had some problems with pages not loading especially after posting comments. I am very sorry for the delay but I really appreciate all of the great information you have provided. It is good to know there are people that can relate to other's experiences. I will post again soon. Once again thank you, Advocate1955, Mzkity and Dee1956.
Hey Dee..... Yes, my count was 34M. I am not sure about the relationship of the amount of virus vs. how long one has had the virus but that is one question I will ask my doctor on Monday.It is possible that the tests were returning false negatives but I had testing at three different labs and doctors offices in the past 3 - 4 years. They were just routine tests and there was no indication of the HCV at that time. I was not aware of the cirrhosis until an ultra-sound indicated an enlarged spleen and liver and a biopsy later that month. Since the damage has assuredly occurred over many, many years I really think it was something else other than the HCV. They were unable to determine what was causing the damage but since I also had a high positive ANA they thought it may be auto-immune related. I have also been exposed to some pretty nasty chemicals in my work over the years.There is some kind of auto-immune problem occurring but since I have had so many other health issues I have not really pursued it. They wanted me to go to an RA specialist but I have put it off. I do not feel like dealing with yet one more diagnosis at this time. In the scope of things, RA is low on the list right now even though it might help with determining the initial cause and may save some future liver damage. The bottom line is that I now have HCV and cirrhosis so the actual cause is not really important right now unless it flares back up. I have to try and get rid of the HCV first and worry about other causes later. It is all a little confusing but the bottom line will remain consistent until I have had a chance at treatment. I am so glad that your treatment has worked out and that you are SVR. I hope mine will work out as well as yours. Thank you for your input and advice
Hi I noticed that you mentioned your liver enzymes were normal. Mine were slightly elevated when I found out I had HCV and was going into cirrhosis.
(I had been tested in the 90's and I got a false negative at least twice)
I was told my blood work did not indicate how sick I was
Is it possible that you have had HCV for a long time?
I only ask because when i had had it for 30 years my VL was 7M, is yours 30M? One may have nothing to do with the other, just curious.
Like Cean said, you could find that tx will help you.
I had cryoglobulinemia which was pretty painful and awful looking. Now that I am SVR it is gone.
I feel better than I have in many many years
D
(I had been tested in the 90's and I got a false negative at least twice)
I was told my blood work did not indicate how sick I was
Is it possible that you have had HCV for a long time?
I only ask because when i had had it for 30 years my VL was 7M, is yours 30M? One may have nothing to do with the other, just curious.
Like Cean said, you could find that tx will help you.
I had cryoglobulinemia which was pretty painful and awful looking. Now that I am SVR it is gone.
I feel better than I have in many many years
D
Oh, I'm so sorry it turned out that you are infected after all! What a shame that it wasn't discovered before your liver was damaged so much, but it is a lot better to know now than if you had gone into liver failure before getting the diagnosis. If you don't get into a study the treatment will consist of a weekly subcutaneous injection of interferon and multiple daily doses of ribavirin and a protease inhibitor, either Incivek or Boceprevir. If you are given Incivek you will only take it for the first 12 weeks of tx (treatment) and then continue tx with just the other two meds for a total of either 24 weeks or 48 weeks, depending on how quickly your particular virus responds to the drugs – if the doctors assume you are stage 3. If they assume you are stage 4 then you must treat for 48 weeks regardless of the speed of response. It makes it a pain that they have labelled you stage 3/4, and I don't know what that will mean in terms of tx length. At any rate, the first 12 weeks are the hardest, as the Incivek has some difficult requirements. It must be preceded (within 30 minutes or less) by a meal or snack containing at least 20 grams of fat, and must be carefully scheduled to every 8 hours. It also is the most frequent cause of severe sx (side effects), such as nausea, rashes and blood abnormalities. But it's only the first 12 weeks. I don't know as much about the other protease inhibitor except that it is started later in tx, after a lead-in period of just the interferon and ribavirin and it is then continued throughout the rest of tx. I think it seems to be milder in terms of sx.
Your profile says you are 50, and that is a pretty good age for treating. The tx does seem to be harder (with worse sx) the older you are, and 50 is still a bit on the young side. I treated at ages (approximately) 40, 52 and 58, and it was much harder each time. Thankfully, my final tx, with Incivek, worked and I am now free of the virus.
As for your auto-immune disorders, there is a possibility that they are a result of, or were triggered by, the HCV. If so then there is a possibility that eliminating the virus will allow those disorders to improve spontaneously. There is also the possibility that the autoimmune disorders are entirely unrelated to the HCV, and in that case the interferon may make them worse, as it is like ramping up your own immune system. You should discuss all of this with your rheumatologist before starting. I have had the HCV-triggered autoimmune problems and tx did not worsen any of them. I did note a real decrease in back pain during tx, but no decrease in pain or dysfunction in my hand joints. Now that I'm virus-free and finished tx 9 months ago my back pain returned to usual levels and my hand joints have stayed the same, but its still early and I'm still hoping those joints will improve over time, at least the autoimmune portion. I also have acquired an osteoarthritis issue recently and I don't expect that to improve with my HCV recovery.
Make sure that all of your specialists are communicating well with each other for your tx. Many meds interact badly with protease inhibitors, sometimes negating each other and sometimes multiplying each other, but either can be dangerous. You will probably have to temporarily stop some meds while on this tx, so its especially important for your different doctors to all be on board.
Come back here frequently with any questions. This forum is a real life-saver! Good luck - you CAN do this.
Your profile says you are 50, and that is a pretty good age for treating. The tx does seem to be harder (with worse sx) the older you are, and 50 is still a bit on the young side. I treated at ages (approximately) 40, 52 and 58, and it was much harder each time. Thankfully, my final tx, with Incivek, worked and I am now free of the virus.
As for your auto-immune disorders, there is a possibility that they are a result of, or were triggered by, the HCV. If so then there is a possibility that eliminating the virus will allow those disorders to improve spontaneously. There is also the possibility that the autoimmune disorders are entirely unrelated to the HCV, and in that case the interferon may make them worse, as it is like ramping up your own immune system. You should discuss all of this with your rheumatologist before starting. I have had the HCV-triggered autoimmune problems and tx did not worsen any of them. I did note a real decrease in back pain during tx, but no decrease in pain or dysfunction in my hand joints. Now that I'm virus-free and finished tx 9 months ago my back pain returned to usual levels and my hand joints have stayed the same, but its still early and I'm still hoping those joints will improve over time, at least the autoimmune portion. I also have acquired an osteoarthritis issue recently and I don't expect that to improve with my HCV recovery.
Make sure that all of your specialists are communicating well with each other for your tx. Many meds interact badly with protease inhibitors, sometimes negating each other and sometimes multiplying each other, but either can be dangerous. You will probably have to temporarily stop some meds while on this tx, so its especially important for your different doctors to all be on board.
Come back here frequently with any questions. This forum is a real life-saver! Good luck - you CAN do this.
Hi!! There subcutaneous injections and you do them at home. I don't know what type you will be using, mine were the pro-click and the other is the glass type. You will take a class before you start treatment. They show you how to do the injections.The injections are very easy! You can google both, I think if you type in pegalyted interferon it comes up. Glad you decided to treat!! Good luck to you. :). Kitty
Forgot to ask a question...Do you know if the weekly injections are done at the doctor's office or is this a take home medication that I would administer myself?
You are right Advocate. I know that I cannot allow any further progression of my cirrhosis if at all possible. Eventual liver failure will occur without treatment and as you said that is much worse than the treatment. I am very happy that we have this forum. It will be so helpful to have some support from others that have experienced liver disease and treatment. Although I have not learned the specific details of my treatment the doctor has told me that it will involve three medications. One weekly injection and two oral medications. This entire episode has caused me some anxiety but not treating this is not an option. I have a family and I am concerned for them also. I could not live with myself if my wife or child were inadvertently infected with this virus. Thanks for taking the time to reply. It is good to know you are out there!
I am sorry to hear that you do have chronic HCV as indicated by a viral load result from your PCR.
While the side effects from HCV treatments may be difficult, they are not as difficult as liver failure and End Stage Liver Disease. If you have medical insurance, it will cover a large percentage of the cost of treatment meds. If your cirrhosis is still compensated, you are best advised to treat now. If your liver decompensates, it is likely that you will not be able to treat your Hep C as the meds could cause a decompensated liver to fail. A new treatment for g 1's should be available by the end of this hear or early next year that will have fewer side effects and a shorter treatment time than the current triple therapy for g 1's. It will still involve 3 meds, 2 of which are part of the current treatment, but the new drug involved reportedly has minimal.side effects.
The last thing you want to happen is to have your liver decompensate due to continued damage from HCV, as that will leave you facing life threatening symptoms, death, or liver transplant.
Advocate1955
While the side effects from HCV treatments may be difficult, they are not as difficult as liver failure and End Stage Liver Disease. If you have medical insurance, it will cover a large percentage of the cost of treatment meds. If your cirrhosis is still compensated, you are best advised to treat now. If your liver decompensates, it is likely that you will not be able to treat your Hep C as the meds could cause a decompensated liver to fail. A new treatment for g 1's should be available by the end of this hear or early next year that will have fewer side effects and a shorter treatment time than the current triple therapy for g 1's. It will still involve 3 meds, 2 of which are part of the current treatment, but the new drug involved reportedly has minimal.side effects.
The last thing you want to happen is to have your liver decompensate due to continued damage from HCV, as that will leave you facing life threatening symptoms, death, or liver transplant.
Advocate1955
I have finally received all of my test results and will be seeing the doctor on 6/24/2013 about starting treatment for the HCV. To begin I will post the general results of the blood work;
Genotype: 1-A
Viral Load: 34,000,000
Log: 7.5
I have been very worried about starting the treatment. As I stated last month my health problems are many and I was at stage 3/4 prior to contracting the HCV virus. My last negative HCV test was November 2011. I know I must start treatment to lessen the chance of even more liver damage. However, I am very concerned about the cost of the medications and the side-effects. There is an outside chance that I may be able to participate in a clinical trial in this area which may help with the costs. The side-effects are a very large concern for me. I am not sure I can handle all of the side-effects associated with this treatment. I really appreciate all of the informative comments and the well wishes from all of you. I will keep things posted as they occur. Thank you all....
Genotype: 1-A
Viral Load: 34,000,000
Log: 7.5
I have been very worried about starting the treatment. As I stated last month my health problems are many and I was at stage 3/4 prior to contracting the HCV virus. My last negative HCV test was November 2011. I know I must start treatment to lessen the chance of even more liver damage. However, I am very concerned about the cost of the medications and the side-effects. There is an outside chance that I may be able to participate in a clinical trial in this area which may help with the costs. The side-effects are a very large concern for me. I am not sure I can handle all of the side-effects associated with this treatment. I really appreciate all of the informative comments and the well wishes from all of you. I will keep things posted as they occur. Thank you all....
Hello the people above are invaluable to this forum and have given you great information.
All I can add is that I am so very sorry for what happened to you. Because HCV is so slow moving you can have it for 30 years like I did and show no symptoms.
I was tested in 1996 due to liver enzymes being slightly elevated before an operation. I received a false negative. On to 2004, in preparation for surgery was tested for everything. My blood work showed I was positive for HCV exposure. Problem is that no one looked at my blood work results. Back then I did not realize that I needed to have copies of every test that is run on me. I learned too late how important that was. If I had gotten a copy of the bloodwork in 2004, I might not have gotten to cirrhosis, I know I would have put off that surgery and all the harm it caused me
In 2007, I was finally diagnosed with HCV and that only happened because my platelets were low so I was sent to a blood specialist, he noticed spider nevi, tested me for several disorders and I was diagnosed with HCV and cirrhosis
Again, I am so sorry for what has happened to you. It is a real crime in my mind however all you can do now is find yourself a good hepatologist and go from there.
Good luck to you, please keep in touch, there are many caring, helpful people here that are more than willing to help out.
I have also received a false positive for Hep B, really makes me question every test.
Dee
All I can add is that I am so very sorry for what happened to you. Because HCV is so slow moving you can have it for 30 years like I did and show no symptoms.
I was tested in 1996 due to liver enzymes being slightly elevated before an operation. I received a false negative. On to 2004, in preparation for surgery was tested for everything. My blood work showed I was positive for HCV exposure. Problem is that no one looked at my blood work results. Back then I did not realize that I needed to have copies of every test that is run on me. I learned too late how important that was. If I had gotten a copy of the bloodwork in 2004, I might not have gotten to cirrhosis, I know I would have put off that surgery and all the harm it caused me
In 2007, I was finally diagnosed with HCV and that only happened because my platelets were low so I was sent to a blood specialist, he noticed spider nevi, tested me for several disorders and I was diagnosed with HCV and cirrhosis
Again, I am so sorry for what has happened to you. It is a real crime in my mind however all you can do now is find yourself a good hepatologist and go from there.
Good luck to you, please keep in touch, there are many caring, helpful people here that are more than willing to help out.
I have also received a false positive for Hep B, really makes me question every test.
Dee
Thank you Hector, for picking up on all those loose ends that my answer left hanging. PowerPC, I'm really sorry to hear of the degree of your fatigue. I always think I have severe fatigue because I sleep too much and even when I do drag myself out if bed around 9am, I'm not fully awake until mid-afternoon. By 5pm I can usually manage walks of a mile or so however, so my idea of severe fatigue must need a major adjustment.
It sounds like you have a very good internist to work with, and I would suggest that you ask that doctor to recommend a good hepatologist. You definitely need that level of care, and ideally it should be a hepatologist who works in a hospital liver clinic, but it would be very good if it was a doctor who your internist has good ties with so they can easily share information and ideas about your condition. I have that sort of combo on my own case and it gives me much more confidence to know that if I don't get a good explanation from my hepatologist I can always ask my internist to clarify, and if she feels anything is missing she will go straight to my hepatologist and ask him about it. Doctors asking questions of other doctors always get the best and quickest of answers! In fact, one time I had a new doctor misread my intake form and mistakenly assume I was an M.D. myself, and it was unbelievable how well I was treated. I have some excellent doctors, but I've never had one treat me with THAT much respect! I think it unnerved him a little when I clarified that I was not a doctor, and he had a moment of slight confusion, but handled it gracefully by not totally downgrading my treatment. Best wishes for you!
It sounds like you have a very good internist to work with, and I would suggest that you ask that doctor to recommend a good hepatologist. You definitely need that level of care, and ideally it should be a hepatologist who works in a hospital liver clinic, but it would be very good if it was a doctor who your internist has good ties with so they can easily share information and ideas about your condition. I have that sort of combo on my own case and it gives me much more confidence to know that if I don't get a good explanation from my hepatologist I can always ask my internist to clarify, and if she feels anything is missing she will go straight to my hepatologist and ask him about it. Doctors asking questions of other doctors always get the best and quickest of answers! In fact, one time I had a new doctor misread my intake form and mistakenly assume I was an M.D. myself, and it was unbelievable how well I was treated. I have some excellent doctors, but I've never had one treat me with THAT much respect! I think it unnerved him a little when I clarified that I was not a doctor, and he had a moment of slight confusion, but handled it gracefully by not totally downgrading my treatment. Best wishes for you!
COMMUNITY LEADER
I am sorry you are dealing with other issues as well as possible liver disease. A hepatologist can diagnose anything related to cirrhosis or liver disease as they do it on a daily basis. Whole gastros specialize in the entire digestive track hepatologist focus on the parts that are effected by liver disease.
Let's see what the tests say and we'll go from there.
The more data we have, the better everyone can be of help.
Good luck.
Hector
Let's see what the tests say and we'll go from there.
The more data we have, the better everyone can be of help.
Good luck.
Hector
You are correct in your description of my fatigue. The doctors I have seen include a gastroenterolgist, an Internal Medicine specialilst and even my vascular surgeon has weighed in on the matter. I have never seen a Hepatologist but depending on the results of the upcoming tests that may change. The GI doctor that I have seen is in private practice and limited on resources. I have not been too impressed with the care I have been recieving from that office. My internal MD has done more than any of the rest. I appreciate your reply and will post the results hopefully later this week. Perhaps by then I will be a little more educated on the subject. I have numerous other health problems that can be contributing to the symptoms I experience and that is why I feel it is important to distinguish exactly where I am at with the cirrohsis and the HCV. I am sure I will have numerous questions that will need to be answered by someone as knowledgeable as you are....thanks again!
COMMUNITY LEADER
First, I would have testing of your viral load performed. That will tell you if you are infected with hepatitis B or C.
Hepatitis C antibodies never “go into remission”. Once you are exposed to the virus antibodies will always tell that you were exposed.
Not everyone with stage 3 or early stage 4 liver disease has abnormal enzyme levels. (ALT, AST).
To have liver disease progress to stage 3 / 4 usually takes decades so whatever is causing it has been causing it for many decades. An enlarged spleen is a sign of portal hypertension which is usually associated with cirrhosis. Most people with portal hypertension also have varices. Have you had an Endoscopy looking for varices?
If you still have no definite answer after your upcoming tests you receive the test results than you should see a hepatologist at a nearby transplant center before whatever is causing your liver disease becomes too advanced to treat and then you may need a liver transplant. Hepatologists are experienced in determining all causes of liver disease. You will get an accurate diagnosis and then determine what your best options are.
• Chronic alcohol abuse
• Hepatitis C
• Hepatitis B
• Fat accumulating in the liver (NonAlcoholic Fatty Liver Disease)
• Destruction of the bile ducts (Primary Biliary Cirrhosis)
• Hardening and scarring of the bile ducts (Primary Sclerosing Cholangitis)
• Iron buildup in the body (Hemochromatosis)
• Liver disease caused by your body's immune system (AutoImmune Hepatitis)
• Copper accumulated in the liver (Wilson's disease)
Also if you have stage 4 liver disease (cirrhosis) you should be monitored every 6 months for liver cancer (HCC) as part of managing your liver disease.
You don’t mention what type of doctor is monitoring your liver disease. Even gastroenterologists in private practice may not have the resources (scanning machines, pathologists, labs) needed to diagnose liver disease.
Since you say 1-2 years ago you had stage 3-4 liver disease you should have compensated cirrhosis which usually has no symptoms other than fatigue. What do you mean extreme fatigue? You don’t have the strength to stand up or walk more than a few blocks? Shortness of breath is usually the result of moderate ascites which is a complication of decompensated cirrhosis when fluid builds up in your abdomen and pushes on the lungs and stomach which makes it difficult to breathe deeply and eat food. Peripheral neuropathy is NOT a complication of cirrhosis at any stage of liver disease.
Best of luck to you!
Hector
Hepatitis C antibodies never “go into remission”. Once you are exposed to the virus antibodies will always tell that you were exposed.
Not everyone with stage 3 or early stage 4 liver disease has abnormal enzyme levels. (ALT, AST).
To have liver disease progress to stage 3 / 4 usually takes decades so whatever is causing it has been causing it for many decades. An enlarged spleen is a sign of portal hypertension which is usually associated with cirrhosis. Most people with portal hypertension also have varices. Have you had an Endoscopy looking for varices?
If you still have no definite answer after your upcoming tests you receive the test results than you should see a hepatologist at a nearby transplant center before whatever is causing your liver disease becomes too advanced to treat and then you may need a liver transplant. Hepatologists are experienced in determining all causes of liver disease. You will get an accurate diagnosis and then determine what your best options are.
• Chronic alcohol abuse
• Hepatitis C
• Hepatitis B
• Fat accumulating in the liver (NonAlcoholic Fatty Liver Disease)
• Destruction of the bile ducts (Primary Biliary Cirrhosis)
• Hardening and scarring of the bile ducts (Primary Sclerosing Cholangitis)
• Iron buildup in the body (Hemochromatosis)
• Liver disease caused by your body's immune system (AutoImmune Hepatitis)
• Copper accumulated in the liver (Wilson's disease)
Also if you have stage 4 liver disease (cirrhosis) you should be monitored every 6 months for liver cancer (HCC) as part of managing your liver disease.
You don’t mention what type of doctor is monitoring your liver disease. Even gastroenterologists in private practice may not have the resources (scanning machines, pathologists, labs) needed to diagnose liver disease.
Since you say 1-2 years ago you had stage 3-4 liver disease you should have compensated cirrhosis which usually has no symptoms other than fatigue. What do you mean extreme fatigue? You don’t have the strength to stand up or walk more than a few blocks? Shortness of breath is usually the result of moderate ascites which is a complication of decompensated cirrhosis when fluid builds up in your abdomen and pushes on the lungs and stomach which makes it difficult to breathe deeply and eat food. Peripheral neuropathy is NOT a complication of cirrhosis at any stage of liver disease.
Best of luck to you!
Hector
Thank you very much for the reply and the information..The diagnosis of the autoimmune hepatits has recently been put into some doubt as well. When all of this first came about the immune system testing showed a high positive. Recent tests show negative results. I am aware that autoimmune disorders are notoriously hard to diagnose and can go in and out of remission so I cannot rely on those tests. I am praying that the HCV screening was a false positive. I do not know the titer level yet but should know tomorrow morning when I see the doctor for the follow up tests. 10 - 20% false positives leaves a lot of room for hope! Although the MD did not tell me exactly which tests he will perform he did tell me that they would give us much more information. I will make sure the HCV PCR is among the tests ordered. A new medical condition is something I can do without right now. My health has been extremely poor for the past 6 years. I have had the open AAA surgery back in September and I am not fully recovered from that. It was absoutely the worst and most gruelling surgical procedure I have ever experienced! Thank you for your words of hope. I should know more by the end of next week and I will update you with the detailed testing when I get the results. ***Can you tell me what the acronym SVR stands for? I have an idea but not sure...***Thank you again!
I noticed on your profile that you have been diagnosed with autoimmune hepatitis, and I would guess that this is the cause of your cirrhosis. The HCV antibody test you had is not able to determine if one is currently infected; it only measures antibodies to the virus, so it can only indicate that you have been infected at some time in your life. However, the test does return 10-20% false positives, occasionally reacting to other types of antibodies, especially in the winter, and this is more likely to be the case in those who test weakly positive. Do you know the titer level of your positive result? Your doctors should order a HCV PCR test to confirm whether the virus is present or not and then work out whether your AB test was a false positive or real.
You are correct that HCV infection would add to your pre-existing liver damage, but there is still good reason to hope that you don't actually have the virus. Lets keep our fingers crossed! As for your doctors not treating your cirrhosis, that is the norm for compensated cirrhosis. I was diagnosed with cirrhosis nine years ago but because it has remained compensated (no ascites, no varices, no hepatic encephalopathy, normal bilirubin, normal creatinine and normal INR) I've had no need for any treatment for the cirrhosis. Current treatment options are focused on treating the symptoms of decompensated cirrhosis or treating the cause of cirrhosis, and I don't think there is any treatment for compensated cirrhosis. In my case we had to eliminate the HCV that caused it all. The only other advice I've been given is to restrict my salt intake and follow all the usual healthy eating rules. Like you, I also have severe fatigue and lots of spider veins. I've recently completed tx that eliminated my HCV infection, and have been declared SVR. My doctor anticipates improvement in my liver over time in spite of having been cirrhotic for so long (he calls it "remodeling" rather than the "regenerating" that occurs in those with less damaged livers), and I am really hoping to get some energy back eventually.
In your case treatment would probably focus on your autoimmune hepatitis, and on the HCV if it is shown to be present. You might find the Hepatitis Autoimmune Community to be helpful for the former. Good luck with the next round of tests!
You are correct that HCV infection would add to your pre-existing liver damage, but there is still good reason to hope that you don't actually have the virus. Lets keep our fingers crossed! As for your doctors not treating your cirrhosis, that is the norm for compensated cirrhosis. I was diagnosed with cirrhosis nine years ago but because it has remained compensated (no ascites, no varices, no hepatic encephalopathy, normal bilirubin, normal creatinine and normal INR) I've had no need for any treatment for the cirrhosis. Current treatment options are focused on treating the symptoms of decompensated cirrhosis or treating the cause of cirrhosis, and I don't think there is any treatment for compensated cirrhosis. In my case we had to eliminate the HCV that caused it all. The only other advice I've been given is to restrict my salt intake and follow all the usual healthy eating rules. Like you, I also have severe fatigue and lots of spider veins. I've recently completed tx that eliminated my HCV infection, and have been declared SVR. My doctor anticipates improvement in my liver over time in spite of having been cirrhotic for so long (he calls it "remodeling" rather than the "regenerating" that occurs in those with less damaged livers), and I am really hoping to get some energy back eventually.
In your case treatment would probably focus on your autoimmune hepatitis, and on the HCV if it is shown to be present. You might find the Hepatitis Autoimmune Community to be helpful for the former. Good luck with the next round of tests!
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