Thanks Cinnamon Girl, for the time being I am heartened by my low HBV count. I did have an appointment with my doctor earlier this week and she told me that they are able to offer their patients Daklinza but that it would take a while before I could get a shot at it (at least 7 months) because of their waitlist. By that time I will be moving back to the U.S. She said I would have an easier time getting access to the newer drugs in the States, as long as I can get medical insurance. In terms of my liver, she said that I should not worry about the interim waiting period before I start my next treatment, as it will be a relatively short period of time. So, now I am going to focus on getting informed about all of the various insurance options in the U.S. so that I can get started as soon as possible when we move back, although I'm sure it will take at least a few months before everything is up and running. Again, I'm lucky that such effective new treatments are available and that I'll have access to them soon enough.
Cinnamon Girl said
Feb 23, 2015
Let us know how your appointment goes then, Mopey, we`ll be very interested in hearing more about the next treatment options your doctor discusses with you. Whatever happens though, rest assured that eventually you`ll be clear of this virus, I`m sure.
About the Hep B, it`s a completely different virus from Hep C and needs to be treated separately, if necessary . On the other hand, getting rid of the HC virus would take a lot of strain off your liver and would at least help your immune system hold the HBV at bay, I would imagine. And actually the Peg/Rib treatment you`ve already done has quite possibly helped to keep it suppressed, as your HBV count is so low. That`s something you`ll need to discuss with your doctor though.
Here`s an article from the NHS about Hep B and how it`s treated, if you`d like to read more about it...
Thanks everyone for the replies. It is encouraging to know that so many more effective treatment options are becoming available. Since my fibrosis stage is relatively advanced, I think I'll have a good shot at getting access to new drugs here in the UK, and at getting my treatment covored in the U.S (I will be an American permanent resident, and have lived and worked there for many years). I meet with the doctor sometime next week, so I'll have a better idea of what treatment will be offered to me. For now, I am going to have faith in the what you all are saying and not worry too much about liver damage. Hopefully I'll be on a new, more bearable course of tx in the next few months.
My HBV count is actually still very low. It is less than 20 IU/ml. I wonder if the next round of HCV treatment will blast the HBV right out as well. I haven't gotten any clear answers about that from my docs or nurses yet.
Cinnamon Girl said
Feb 19, 2015
Hi again Mopey,
First of all, many congratulations on the birth of your new baby! You`ll have so many wonderful years ahead of you with a little daughter in your family, what a blessing for you and your wife! My daughter is 32 now and I wouldn`t be without her for all the world!
So sorry to hear you`ve relapsed, that`s very disappointing for you after struggling through 24 weeks of Peg/Riba and I know it wasn`t exactly a walk in the park for you or your wife.
The good news though is that it sounds like you`ll be getting Sovaldi if you`ve been told you`re going to be getting new drugs. It`s available over here on the NHS for only a limited number of people at the moment, depending on circumstances and need, and in your position I would think it`s likely you would qualify. Some people are also getting Sovaldi plus Daclatasvir on a compassionate use basis, also according to need.
Don`t worry about your viral load, it will settle down in time as your nurse said.
Please do keep us informed and I hope you don`t have to wait long to start your new treatment. In the meantime take care of yourself and enjoy the early weeks and months of your little daughter`s life...and think about all the good and happy times to come!
Wishing you all the best of luck, and try not to worry...your time will come and eventually you`ll be free of the virus!
Zlikster said
Feb 19, 2015
Hi Mopey,
I had similar experience. GT3 like you too. I have relapsed too cca 3 months post tx. 23 weeks of Riba+Peg and all was good (beside peg perm sx). Your VL will get to pre tx levels i bet. My hepa told me it's pretty common viral kinetics in HCV after (failed) tx. I was cca 25-30k IU/L pre tx, 51 IU/L @ w4 tx, UND @ W8, W24, then 3 months post tx i have relapsed and VL was 132k, got back to pre tx levels @ 32k 6 months post tx. My hepa told me, at least my liver had some break while UND after who knows how many years of liver occupation :)
Try to get asap on Sovaldi+Riba from NHS? I think it might be easier to obtain it while in UK then in states. Jill (admin) is from UK and she might know better.
Also, i am thinking of trying to get into this clinical trial in UK. You can check it too, sounds good:
wish it was Phase III, but i am ok (brave enough) for Phase II too :)
there was a great clinical trial for GT3 involving Sovaldi+GS-5816 in Phase III in UK, but i was too late to apply. That combo seems to be THE thing for us GT3s. Like Sofosbuvir+Ledipasvir (Harvoni) seems to be for GT1s :) So do not worry, new options are coming fast.
best
Tig said
Feb 19, 2015
Hi Mopey,
I'm sorry to hear your unfortunate news. I know you had high hopes for success and you will in time. The old SOC Int/Riba just didn't provide the oomph consistently to destroy all viral remnants. But be confident in knowing the new protocols are excellent and have rates of success in the 90 to 100. percentile, with few SFX!
Many congratulations on the birth of your daughter!! I have a daughter, but not a baby anymore, nearly 25. It has been a joy to see her grow and develop into the beautiful woman and mother she has become. But they will always be our babies! I wish you and your family all the blessings our lives have to offer!
Your viral load fluctuates on a continual (daily) basis. It could be significantly lower or higher depending on the action of your immune system on the virus. The viral count has little to do with the rates of success, so don't worry about that. Simply having a high viral load doesn't mean the damage is progressing at an equally high rate. Remember, the viral count isn't in your liver alone, it's body wide. Your nurse's response to the sudden increase is plausible, trust their explanation. Once the treatment drugs effect diminished, it gave the virus the opportunity to replicate uncontrolled. Treatment attacks your immune system and prevents it from functioning properly. Once it has had time to correct itself through drug clearance, it will re-attack the virus and you will likely see a reduction in your viral load. But again, it rises and falls with the tide. So don't be too concerned right now.
There are many new opportunities coming to all of us. Jill, our administrator and friend here, is from the UK and can respond on available treatments there now and soon to come. She left a post recently: http://hepcfriends.activeboard.com/t58477964/european-commission-approves-daklinza-daclatasvir-across-mul/?page=1#comment-58477964. It details one of the new opportunities using a BMS protocol with Daklinza. Check it out. Sovaldi and Harvoni are gaining ground around the world, so you have every reason to be encouraged for beating this in the near future. There are some pan genotypic protocols in development, namely Sovaldi and GS-5816 from Gilead. Things are looking up for everyone! I hope you have equal success slaying your HBV issue as well. Let us know how that is going too.
Treatment opportunities with Medicare and Medicaid here in the States are gaining ground all the time. It has a lot to do with your fibrosis stage right now. With the advent of Obamacare, the money has gotten scarce. Hopefully they will figure out better ways to fund this dramatic change in our healthcare system. But treatment opportunities are available if you come to the USA. There are also private payment assistance programs available here to help.
I hope I have answered a few of your questions. Let me know if there is anything else I can do. Good luck...
Tig
Mopey said
Feb 19, 2015
Hello everyone,
Just thought I'd post an update on how my treatment went. I started treatment (interferon + ribavirin) on June 3rd, 2014, and finished a 24 week course on November 17th, 2014. My initial VL was 469,838. I am also co-infected with HBV. After 12 weeks on tx, I was undetected, and I was also undetected right after I completed tx. My side effects cleared up about a month afterwards and all was going well. My wife gave birth to a baby girl on the 12th of February, and she is exactly 1 week old today. We've been totally overjoyed and over the moon about having her in our lives.
Today, I got a phone call from my clinic letting me know that my 3- month post-treatment results had come in, and the virus is back. My current VL is 2,530,287, which is actually much higher than my starting VL. This is very disappointing news. I'm getting treated through the NHS here in the UK. I don't know when I'll be started on a new course of treatment, or what exactly that will be. I have been told I'll be given new drugs, so I'm assuming it's probably Sovaldi? I will have an appointment with the hepatologist soon so we'll discuss it then. Anybody have any ideas?
The nurse at the clinic told me that it was not unusual for post-treatment VL to increase and then return to pre-treatment levels. Is this true? How much damage will this kind of VL do to my liver in the meantime?
Also, later this year my family and I will be moving back to the United States. If I don't get a second round of treatment here in the UK, I will have to seek treatment in the States. Does anybody have any ideas about whether Medicare will cover Hep C treatment, or what other insurance plans might be suitable for me?
I'm trying to stay positive. I know there are a lot of other treatment options out there with vastly improved success rates. But I have to admit this news has bummed us out. I and my whole family was so miserable on Interferon + Ribavarin, and the thought of going through treatment again (even one with fewer side effects) is dreadful. But I know I'm lucky to have access to treatment at all, so I'll take what I can get.
Thanks Cinnamon Girl, for the time being I am heartened by my low HBV count. I did have an appointment with my doctor earlier this week and she told me that they are able to offer their patients Daklinza but that it would take a while before I could get a shot at it (at least 7 months) because of their waitlist. By that time I will be moving back to the U.S. She said I would have an easier time getting access to the newer drugs in the States, as long as I can get medical insurance. In terms of my liver, she said that I should not worry about the interim waiting period before I start my next treatment, as it will be a relatively short period of time. So, now I am going to focus on getting informed about all of the various insurance options in the U.S. so that I can get started as soon as possible when we move back, although I'm sure it will take at least a few months before everything is up and running. Again, I'm lucky that such effective new treatments are available and that I'll have access to them soon enough.
Let us know how your appointment goes then, Mopey, we`ll be very interested in hearing more about the next treatment options your doctor discusses with you. Whatever happens though, rest assured that eventually you`ll be clear of this virus, I`m sure.
About the Hep B, it`s a completely different virus from Hep C and needs to be treated separately, if necessary . On the other hand, getting rid of the HC virus would take a lot of strain off your liver and would at least help your immune system hold the HBV at bay, I would imagine. And actually the Peg/Rib treatment you`ve already done has quite possibly helped to keep it suppressed, as your HBV count is so low. That`s something you`ll need to discuss with your doctor though.
Here`s an article from the NHS about Hep B and how it`s treated, if you`d like to read more about it...
http://www.nhs.uk/Conditions/Hepatitis-B/Pages/Treatment.aspx
Good luck and keep in touch! ~ Jill
Thanks everyone for the replies. It is encouraging to know that so many more effective treatment options are becoming available. Since my fibrosis stage is relatively advanced, I think I'll have a good shot at getting access to new drugs here in the UK, and at getting my treatment covored in the U.S (I will be an American permanent resident, and have lived and worked there for many years). I meet with the doctor sometime next week, so I'll have a better idea of what treatment will be offered to me. For now, I am going to have faith in the what you all are saying and not worry too much about liver damage. Hopefully I'll be on a new, more bearable course of tx in the next few months.
My HBV count is actually still very low. It is less than 20 IU/ml. I wonder if the next round of HCV treatment will blast the HBV right out as well. I haven't gotten any clear answers about that from my docs or nurses yet.
Hi again Mopey,
First of all, many congratulations on the birth of your new baby! You`ll have so many wonderful years ahead of you with a little daughter in your family, what a blessing for you and your wife! My daughter is 32 now and I wouldn`t be without her for all the world!
So sorry to hear you`ve relapsed, that`s very disappointing for you after struggling through 24 weeks of Peg/Riba and I know it wasn`t exactly a walk in the park for you or your wife.
The good news though is that it sounds like you`ll be getting Sovaldi if you`ve been told you`re going to be getting new drugs. It`s available over here on the NHS for only a limited number of people at the moment, depending on circumstances and need, and in your position I would think it`s likely you would qualify. Some people are also getting Sovaldi plus Daclatasvir on a compassionate use basis, also according to need.
Don`t worry about your viral load, it will settle down in time as your nurse said.
Please do keep us informed and I hope you don`t have to wait long to start your new treatment. In the meantime take care of yourself and enjoy the early weeks and months of your little daughter`s life...and think about all the good and happy times to come!
Wishing you all the best of luck, and try not to worry...your time will come and eventually you`ll be free of the virus!
Hi Mopey,
I had similar experience. GT3 like you too. I have relapsed too cca 3 months post tx. 23 weeks of Riba+Peg and all was good (beside peg perm sx). Your VL will get to pre tx levels i bet. My hepa told me it's pretty common viral kinetics in HCV after (failed) tx. I was cca 25-30k IU/L pre tx, 51 IU/L @ w4 tx, UND @ W8, W24, then 3 months post tx i have relapsed and VL was 132k, got back to pre tx levels @ 32k 6 months post tx. My hepa told me, at least my liver had some break while UND after who knows how many years of liver occupation :)
Try to get asap on Sovaldi+Riba from NHS? I think it might be easier to obtain it while in UK then in states. Jill (admin) is from UK and she might know better.
Also, i am thinking of trying to get into this clinical trial in UK. You can check it too, sounds good:
https://clinicaltrials.gov/ct2/show/NCT02332720
wish it was Phase III, but i am ok (brave enough) for Phase II too :)
there was a great clinical trial for GT3 involving Sovaldi+GS-5816 in Phase III in UK, but i was too late to apply. That combo seems to be THE thing for us GT3s. Like Sofosbuvir+Ledipasvir (Harvoni) seems to be for GT1s :) So do not worry, new options are coming fast.
best
Hi Mopey,
I'm sorry to hear your unfortunate news. I know you had high hopes for success and you will in time. The old SOC Int/Riba just didn't provide the oomph consistently to destroy all viral remnants. But be confident in knowing the new protocols are excellent and have rates of success in the 90 to 100. percentile, with few SFX!
Many congratulations on the birth of your daughter!! I have a daughter, but not a baby anymore, nearly 25. It has been a joy to see her grow and develop into the beautiful woman and mother she has become. But they will always be our babies! I wish you and your family all the blessings our lives have to offer!
Your viral load fluctuates on a continual (daily) basis. It could be significantly lower or higher depending on the action of your immune system on the virus. The viral count has little to do with the rates of success, so don't worry about that. Simply having a high viral load doesn't mean the damage is progressing at an equally high rate. Remember, the viral count isn't in your liver alone, it's body wide. Your nurse's response to the sudden increase is plausible, trust their explanation. Once the treatment drugs effect diminished, it gave the virus the opportunity to replicate uncontrolled. Treatment attacks your immune system and prevents it from functioning properly. Once it has had time to correct itself through drug clearance, it will re-attack the virus and you will likely see a reduction in your viral load. But again, it rises and falls with the tide. So don't be too concerned right now.
There are many new opportunities coming to all of us. Jill, our administrator and friend here, is from the UK and can respond on available treatments there now and soon to come. She left a post recently: http://hepcfriends.activeboard.com/t58477964/european-commission-approves-daklinza-daclatasvir-across-mul/?page=1#comment-58477964. It details one of the new opportunities using a BMS protocol with Daklinza. Check it out. Sovaldi and Harvoni are gaining ground around the world, so you have every reason to be encouraged for beating this in the near future. There are some pan genotypic protocols in development, namely Sovaldi and GS-5816 from Gilead. Things are looking up for everyone! I hope you have equal success slaying your HBV issue as well. Let us know how that is going too.
Treatment opportunities with Medicare and Medicaid here in the States are gaining ground all the time. It has a lot to do with your fibrosis stage right now. With the advent of Obamacare, the money has gotten scarce. Hopefully they will figure out better ways to fund this dramatic change in our healthcare system. But treatment opportunities are available if you come to the USA. There are also private payment assistance programs available here to help.
I hope I have answered a few of your questions. Let me know if there is anything else I can do. Good luck...
Tig
Hello everyone,
Just thought I'd post an update on how my treatment went. I started treatment (interferon + ribavirin) on June 3rd, 2014, and finished a 24 week course on November 17th, 2014. My initial VL was 469,838. I am also co-infected with HBV. After 12 weeks on tx, I was undetected, and I was also undetected right after I completed tx. My side effects cleared up about a month afterwards and all was going well. My wife gave birth to a baby girl on the 12th of February, and she is exactly 1 week old today. We've been totally overjoyed and over the moon about having her in our lives.
Today, I got a phone call from my clinic letting me know that my 3- month post-treatment results had come in, and the virus is back. My current VL is 2,530,287, which is actually much higher than my starting VL. This is very disappointing news. I'm getting treated through the NHS here in the UK. I don't know when I'll be started on a new course of treatment, or what exactly that will be. I have been told I'll be given new drugs, so I'm assuming it's probably Sovaldi? I will have an appointment with the hepatologist soon so we'll discuss it then. Anybody have any ideas?
The nurse at the clinic told me that it was not unusual for post-treatment VL to increase and then return to pre-treatment levels. Is this true? How much damage will this kind of VL do to my liver in the meantime?
Also, later this year my family and I will be moving back to the United States. If I don't get a second round of treatment here in the UK, I will have to seek treatment in the States. Does anybody have any ideas about whether Medicare will cover Hep C treatment, or what other insurance plans might be suitable for me?
I'm trying to stay positive. I know there are a lot of other treatment options out there with vastly improved success rates. But I have to admit this news has bummed us out. I and my whole family was so miserable on Interferon + Ribavarin, and the thought of going through treatment again (even one with fewer side effects) is dreadful. But I know I'm lucky to have access to treatment at all, so I'll take what I can get.