That's on me Malcolm. Miracle, if you want to start a new thread in the General Discussion section, we can continue the conversation there. My apology to Philbert.
Tig
mallani said
Mar 19, 2015
Miracle,
This is Philbert's thread.
Your progression to F4 is not unusual. ALT of high 200's shows activity.
Don't go on Sovadi and Olysio. Find a doctor who knows what they're doing.
The SVR rate for Geno 2 cirrhotics is more than 90%. Relax.
Tig said
Mar 19, 2015
Hi Miracle,
Sorry to hear your news, but it's not the end of the world. Fibroscan can be fuzzy at the high and low readings on the scale. However, if your doctor isn't going to recommend a biopsy, which is currently the most accurate test for fibrosis, you have to accept the F4 stage as far as treatment decisions are concerned. F4 is considered cirrhosis, but the new protocols are very effective in treating Genotype 2. I would ask your doctor about his choice of protocols because Sovaldi and Olysio are not indicated for GT 2. The AASLD recommended treatment for GT 2 is Sovaldi and Ribavirin for 12 weeks and 16 when cirrhosis is present. I'll include some current data on that. Sovaldi and Olysio is only recommended for Genotype 1. That's one reason why a Board certified GE or Hepatologist is desirable. They are up on the current treatment recommendations. Can you search your area for someone better schooled on HCV? I could help you look online if you would like. You could private message your location to me if interested. General Practice doctors aren't generally as current as the specialists.
Depending on your situation, the new protocol coming out soon from Gilead Sovaldi and GS5816 may be a better option. That's a decision between you and your doctor. But Sovaldi and Ribavirin is very effective in the treatment of GT 2. Your ALT and AST being over 200 is an indication that there are some issues progressing, as is the increased fibrosis stage. The low platelet count can be a result of the cirrhosis. The abdominal ultrasound will provide a more accurate indication of liver and spleen size, but it does not provide any information regarding cirrhosis like the Fibroscan did. They are completely different tests.
I know it's a lot to digest at first, but many here have been through it or are going through it. You're not alone. It's not like the "old" days when treatment was mid evil in nature! Things are much better, much faster and more effective. Side effects are minimal in most cases and those you may experience are tolerable and improve following treatment.
Do your best to relax, and don't be scared. I know it's easy for me to say, but I've walked that path and made it through to my destination. We're here to walk with you along this road and everyone here is willing to hold your hand along the way! You're going to be fine, okay?? Let me know if I can answer any other questions.
I'm glad this thread was here. Got my results in and of course, I'm scared. I was at an F-2 severity at a 3 which is moderate in 2012. My results came back this time, 3 years later at F4 with severe activity. I'm shocked to say the least and so is my dr. It progressed so slowly then all of a sudden jumps a grade? I was at an F-2 for 10 years or more and a F1 for even longer so this is all strange to me.
Blood results weren't really that bad. Both ALT and SLT were in the high 200's. My bilirubin is in normal range but my platelets were 75.
That concerned him. He did the hand on the stomach to feel the liver...etc and I asked if he felt any hard edges, or any of that but he said he didn't.
He seems to think the test isn't right. I could have a gallstone (have had tummy trouble and pain on the bottom right rib) and if that's the case, it could throw off my labs.
He said with that diagnosis however I should be able to do treatment. Starting me on Sovaldi and Olysio. Said it's not approved for 2b but thinks it will be good for me.
I don't have a hepatologist anywhere near here. Not sure what a "specialist" can really do besides prescribe the medication anyway. I mean the lab does their part and the drugs do their part.
Only symptom that I show is itching. Started 8 months ago and was limited to scalp and ears. I can't sleep. Not sure if that's related or not but my bowel movements are normal color and I'm tired but have been tired for a long time that I have no idea what not being tired is like. I take a nap in the afternoon but have since my children were little and they are all grown now.
The lab forgot my viral load so will have to go back and do that before I start treatmenet. Go for abd. ultrasound tomorrow so will know more Monday. Still very scared but trying to stay strong and praying that I have many, many decades left!
Rubye said
Mar 13, 2015
Hi Philbert,
I can remember how scary it was to hear I had cirrhosis. Now, over 2 years later I find my life to still be quite good and it is my understanding that many people will easily live over 20 years with cirrhosis.
If anything, the cirrhosis should make it more likely insurance will approve you for the Harvoni. Once you become undetected then hopefully your liver may be able to begin a healing process. If you don't drink alcohol and maintain a liver friendly diet, you should live a long full life. What helped me to overcome my fears was educating myself. There are very good online resources with up-to-date information on cirrhosis. This is a great forum with lots of valuable information, and I'm glad you're here. Take care.
Dzdayscomin said
Mar 12, 2015
Please share your symptoms and I can tell 1st hand what to expect. ....to some degree of course.
Do you have Acites? Do you have any swelling of the legs or feet? How well do you tolerate meals and digestion? How is the fatigue?are you experiencing brain fog?(encephalopathy )
Do you have any joint pain or really bad morning stiffness?
How long have Hep c? Did you know you had it and during that time did you drink a lot?even just beer?
The more we know, the more we can help you seek the right care and help you advocate for yourself which Is so very important.
Wishing you the best.
Duane
mallani said
Mar 12, 2015
Hi Philbert,
No need to be devastated. Fibroscan is an inexact science but usually pretty good. An endoscopic biopsy is very accurate, more so than the usual percutaneous biopsy.
The SVR rates with Harvoni as almost as good for cirrhotics. You'll probably need 24 weeks of treatment due to previous treatment failures. If you like, post your most recent Labs. Cheers.
RudiRoo said
Mar 11, 2015
Hi Patrick,
You've come to the right place and I'm happy you found us. There are many here dealing with stage 4 and you are in good company. Others with experience will be along soon. You will get the answers and help you need to make solid choices for your care. We are also learning that with treatment, livers can heal to some extent and cirrhosis may not be permanent.
Rest easy,
Rudi
Tig said
Mar 11, 2015
Hi Philbert,
Welcome to the forum! I'm sorry to hear about your news but don't freak out, it's not the end of the world. I know it has to be a shock, especially when you were told you were F2 at most. There are several instances when the Fibroscan results have been inaccurate at both the high and low ends of Fibroscan staging. Your biopsy is going to be the most accurate gauge of your fibrosis.
We have many members that are F4 and cirrhotic. With the new protocols, even with your cirrhosis, your opportunity to achieve SVR have never been better. It may take a 24 week treatment but these new drugs are nothing like the old treatments.
Can you tell us a little bit more of your history? Knowing your genotype, viral load and previous treatments helps us understand your case better. If you have some lab results, they help too. But don't worry, even with cirrhosis, you can clear the virus and over time see improvements with your cirrhosis. Stay in touch and good luck!
Tig
Check this out, it might provide some helpful information:
After many hvc treatments and being told I was f1 to f2 I recently had Fiber scan that also said I was Fi- F2.. Had full laproscopic biopsy last week and was told today I am F4.. I nearly fainted.. Went in for biopsy hoping fiberscan had missed something so I could be rated minimum F2 for insurance approval of Harvoni.. I am absolutly devastated to be told I am F4 or cirrhotic.. Has anyone heard of such?
That's on me Malcolm. Miracle, if you want to start a new thread in the General Discussion section, we can continue the conversation there. My apology to Philbert.
Tig
Miracle,
This is Philbert's thread.
Your progression to F4 is not unusual. ALT of high 200's shows activity.
Don't go on Sovadi and Olysio. Find a doctor who knows what they're doing.
The SVR rate for Geno 2 cirrhotics is more than 90%.
Relax.
Hi Miracle,
Sorry to hear your news, but it's not the end of the world. Fibroscan can be fuzzy at the high and low readings on the scale. However, if your doctor isn't going to recommend a biopsy, which is currently the most accurate test for fibrosis, you have to accept the F4 stage as far as treatment decisions are concerned. F4 is considered cirrhosis, but the new protocols are very effective in treating Genotype 2. I would ask your doctor about his choice of protocols because Sovaldi and Olysio are not indicated for GT 2. The AASLD recommended treatment for GT 2 is Sovaldi and Ribavirin for 12 weeks and 16 when cirrhosis is present. I'll include some current data on that. Sovaldi and Olysio is only recommended for Genotype 1. That's one reason why a Board certified GE or Hepatologist is desirable. They are up on the current treatment recommendations. Can you search your area for someone better schooled on HCV? I could help you look online if you would like. You could private message your location to me if interested. General Practice doctors aren't generally as current as the specialists.
Depending on your situation, the new protocol coming out soon from Gilead Sovaldi and GS5816 may be a better option. That's a decision between you and your doctor. But Sovaldi and Ribavirin is very effective in the treatment of GT 2. Your ALT and AST being over 200 is an indication that there are some issues progressing, as is the increased fibrosis stage. The low platelet count can be a result of the cirrhosis. The abdominal ultrasound will provide a more accurate indication of liver and spleen size, but it does not provide any information regarding cirrhosis like the Fibroscan did. They are completely different tests.
I know it's a lot to digest at first, but many here have been through it or are going through it. You're not alone. It's not like the "old" days when treatment was mid evil in nature! Things are much better, much faster and more effective. Side effects are minimal in most cases and those you may experience are tolerable and improve following treatment.
Do your best to relax, and don't be scared. I know it's easy for me to say, but I've walked that path and made it through to my destination. We're here to walk with you along this road and everyone here is willing to hold your hand along the way! You're going to be fine, okay?? Let me know if I can answer any other questions.
Tig
http://www.hepmag.com/articles/2512_18756.shtml
Blood results weren't really that bad. Both ALT and SLT were in the high 200's. My bilirubin is in normal range but my platelets were 75.
That concerned him. He did the hand on the stomach to feel the liver...etc and I asked if he felt any hard edges, or any of that but he said he didn't.
He seems to think the test isn't right. I could have a gallstone (have had tummy trouble and pain on the bottom right rib) and if that's the case, it could throw off my labs.
He said with that diagnosis however I should be able to do treatment. Starting me on Sovaldi and Olysio. Said it's not approved for 2b but thinks it will be good for me.
I don't have a hepatologist anywhere near here. Not sure what a "specialist" can really do besides prescribe the medication anyway. I mean the lab does their part and the drugs do their part.
Only symptom that I show is itching. Started 8 months ago and was limited to scalp and ears. I can't sleep. Not sure if that's related or not but my bowel movements are normal color and I'm tired but have been tired for a long time that I have no idea what not being tired is like. I take a nap in the afternoon but have since my children were little and they are all grown now.
The lab forgot my viral load so will have to go back and do that before I start treatmenet. Go for abd. ultrasound tomorrow so will know more Monday. Still very scared but trying to stay strong and praying that I have many, many decades left!
I can remember how scary it was to hear I had cirrhosis. Now, over 2 years later I find my life to still be quite good and it is my understanding that many people will easily live over 20 years with cirrhosis.
If anything, the cirrhosis should make it more likely insurance will approve you for the Harvoni. Once you become undetected then hopefully your liver may be able to begin a healing process. If you don't drink alcohol and maintain a liver friendly diet, you should live a long full life. What helped me to overcome my fears was educating myself. There are very good online resources with up-to-date information on cirrhosis. This is a great forum with lots of valuable information, and I'm glad you're here. Take care.
Please share your symptoms and I can tell 1st hand what to expect. ....to some degree of course.
Do you have Acites? Do you have any swelling of the legs or feet? How well do you tolerate meals and digestion? How is the fatigue?are you experiencing brain fog?(encephalopathy )
Do you have any joint pain or really bad morning stiffness?
How long have Hep c? Did you know you had it and during that time did you drink a lot?even just beer?
The more we know, the more we can help you seek the right care and help you advocate for yourself which Is so very important.
Wishing you the best.
Duane
Hi Philbert,
No need to be devastated. Fibroscan is an inexact science but usually pretty good. An endoscopic biopsy is very accurate, more so than the usual percutaneous biopsy.
The SVR rates with Harvoni as almost as good for cirrhotics. You'll probably need 24 weeks of treatment due to previous treatment failures. If you like, post your most recent Labs. Cheers.
Hi Patrick,
You've come to the right place and I'm happy you found us. There are many here dealing with stage 4 and you are in good company. Others with experience will be along soon. You will get the answers and help you need to make solid choices for your care. We are also learning that with treatment, livers can heal to some extent and cirrhosis may not be permanent.
Rest easy,
Rudi
Hi Philbert,
Welcome to the forum! I'm sorry to hear about your news but don't freak out, it's not the end of the world. I know it has to be a shock, especially when you were told you were F2 at most. There are several instances when the Fibroscan results have been inaccurate at both the high and low ends of Fibroscan staging. Your biopsy is going to be the most accurate gauge of your fibrosis.
We have many members that are F4 and cirrhotic. With the new protocols, even with your cirrhosis, your opportunity to achieve SVR have never been better. It may take a 24 week treatment but these new drugs are nothing like the old treatments.
Can you tell us a little bit more of your history? Knowing your genotype, viral load and previous treatments helps us understand your case better. If you have some lab results, they help too. But don't worry, even with cirrhosis, you can clear the virus and over time see improvements with your cirrhosis. Stay in touch and good luck!
Tig
Check this out, it might provide some helpful information:
http://hepcfriends.activeboard.com/t59728136/cirrhosis-in-hepc_mallani/?page=1#comment-59728136
After many hvc treatments and being told I was f1 to f2 I recently had Fiber scan that also said I was Fi- F2.. Had full laproscopic biopsy last week and was told today I am F4.. I nearly fainted.. Went in for biopsy hoping fiberscan had missed something so I could be rated minimum F2 for insurance approval of Harvoni.. I am absolutly devastated to be told I am F4 or cirrhotic.. Has anyone heard of such?