My first post: Hi my name is Josh, I'm 20 years old, and I've relapsed
mallani said
Apr 8, 2013
Hi Josh,
In your first post you said you 'SVR'd' after 3 months. I think you mean became Undetected. After a year of peg and Riba, I don't think it's worth repeating (in my opinion). As you are Geno 1a, I would be trying triple
therapy with Victrelis or Incivek. Depending on your liver damage, SVR rates could be >80%. In Canada, like here in Australia, you won't see the new DAA's for 5 years (if that). Up to you, but HepC is progressive.
12Step Guy said
Apr 8, 2013
Josh I'm not sure your getting the best HepC treatment advice from your Doctor ( folks who are Interferon resistant probably shouldn't be told they would only have to take Peg/Riba until UND. Since becoming UND is not a solid measure of staying SVR).
My second attempt was daily Peg/Riba for 72 weeks, but I also relapsed again. Currently I'm on week 42 of the triple. And while I'm currently UND, it won't be until six months after I finish; that I will trust the results.
Giving advice is a tricky thing; I think you need a biopsy or liver scan. Blood work alone can be unreliable. If there is advancing cirrhosiss then you might want to try the triple approach, but if you don't have much scarring I'd finish school and wait for some of the better drugs in the pipeline. But then again I don't know how or when the Canadian health service will treat the new drugs.
Vern
josh54321 said
Apr 8, 2013
I'm overwhelmed by all the support. Thank you all so much. I am currently in China and I was treated in China 2 years ago, but right now I'm considering to go back to Canada to get treatment. The reason why I chose China the first time is because I believed it would be beneficial for my career if I learned Chinese. I went to the best hospital in the province, saw the best doctor, and was overall content with my treatment. It would have probably been cheaper to get treated in Canada, but I've heard the medical procedures take much more time, whereas in China, treatment begins instantly, and most of the costs are offset by the cheap cost of living. Althought, I wish I knew about this community earlier so I could have had more time to think about my options.
Today, I consulted a hepatologist, and she told me they don't even have the triple therapy option here. Apparently, the Chinese FDA is currently reenacting the trials, and the earliest boceprevir will be available in China is 2017. She said it's not a good idea to wait that long, so if I wanted to do the triple therapy, I should go to Canada. If I do that, however, I would have wasted all the time and money I've spent on my Bachelor's degree here. She said I could also continue the Peginterferon + Ribavirin and have a 50% chance of being "cured." She also said it's not absolutely necessary to do 2 years of that combo if I achieve SVR within 3 months. If it taks me 6 months or longer to achieve SVR, then I would need to be treated for two years.
I just don't know what to do... should I give up everything I've worked for these few years for the extra 10-20% chance of being "cured" or should I finish my degree and get treatment and see how everything goes after 2 years?
mallani said
Apr 5, 2013
Hi Josh,
Can you tell us where you are living, as your IP address is in China. This will make a big difference to our advice, as Cinnamon Girl has indicated.
britlitkaren said
Apr 5, 2013
Welcome to the forum. You have landed in a soft place. Sounds like you responded well. Don't worry about the viral load. I know that's easier said than done. I have some info for relapsers. Most of these clinical trials are for non-responders. http://www.ihelpc.com/in-the-news/hepatitis-c-clinical-trials-2013/ Best luck to you. You're young and that is on your side. Stay in shape, don't drink, and you're gonna beat this! xoxo Karen:)
Bills said
Apr 4, 2013
Agreed Get a 2nd opinion You'll see lots of mention of triple thearpy. and alot of trials/ studys that are moveing away from Interferon some will be out 2014-15
I've seen others from Canada here and there are other options I think you'll see many others would tell you the same
Keep in touch please post what the yell you as said alot of experience on this forum. hrodnmryu
BillS
Matt Chris said
Apr 4, 2013
Hello and welcome Josh
Sounds like you should seek out a Hepatologist , and most important; Empower yourself by learning all you can about HCV.
Their all kinds of new therapys coming out in the next two years that will be far superior to what you mentioned.
Read all you can on this site and use the search engine, it's great
Matt
Biggyb said
Apr 4, 2013
2 years on treatment? Never ever heard of that, i would look into a 2nd opinion. Good luck.
josh54321 said
Apr 4, 2013
I've been very cautious about anything blood related, so I'm pretty sure I wasn't reexposed.
And thank you for the reassurance. :)
JoAnneh said
Apr 4, 2013
Did you get reexposed to HVC? You will find answers on the forum Lots of experience here.
josh54321 said
Apr 4, 2013
Hi everyone, I just stumbled upon this site, and I'm desperately seeking advice on what to do.
I discovered there was an abnormality with my health in 2009 when I tried to donate blood and the blood was rejected due to a positive HCV count. I was officially diagnosed with Hepatitis C in September 2010 after a liver function test, qualitative test, and quantitative test. At the time, we did not have healthcare in the United States, because I am Canadian (but lived in the US all my life). I went abroad to get treated and the medicine was peginteferon 180 ml + ribavirin (I forget the dosage but it was supposed to be taken 3 times a day) I was SVR'd after 3 months, and continued treatment for a year. 6 months after the last injection and SVR confirmation, I went in for a regular liver check. Doctor said everything was good, so I thought I was officially cleared of this dreaded thing. Recently I haven't been feeling really well, so I went in for a regular liver check and my ALT was really abnormal. I feared the worst and immediately went in for a quantitative HCV test. Turns out I've relapsed with a viral count of 3 x 10^6 IU/ml
The doctor said the only way to treat it now is to do the peginteferon + ribavirin for an extended period of time (2 years)
I've been trying to find some information about successful retreatment plans, but I haven't found any that mention the triple plan OR the 2 years that my doctor suggested. Does anyone have any information on plans for relapsers? My genotype is 1a.
Cinnamon Girl said
Apr 4, 2013
Hi Josh, welcome! You`ve stumbled upon a good place!
Sorry to hear you`ve relapsed, that must have been a big disappointment to you. I must say I`m surprised your doctor has told you that your only option now is to do 2 years of peg and riba. I assumed you were living in the US, can you tell us where you are currently located? That would make a big difference to the treatment options available to you.
All the best, Jill
-- Edited by Cinnamon Girl on Thursday 4th of April 2013 02:55:59 PM
Hi Josh,
In your first post you said you 'SVR'd' after 3 months. I think you mean became Undetected. After a year of peg and Riba, I don't think it's worth repeating (in my opinion). As you are Geno 1a, I would be trying triple
therapy with Victrelis or Incivek. Depending on your liver damage, SVR rates could be >80%. In Canada, like here in Australia, you won't see the new DAA's for 5 years (if that). Up to you, but HepC is progressive.
Josh I'm not sure your getting the best HepC treatment advice from your Doctor ( folks who are Interferon resistant probably shouldn't be told they would only have to take Peg/Riba until UND. Since becoming UND is not a solid measure of staying SVR).
My second attempt was daily Peg/Riba for 72 weeks, but I also relapsed again. Currently I'm on week 42 of the triple. And while I'm currently UND, it won't be until six months after I finish; that I will trust the results.
Giving advice is a tricky thing; I think you need a biopsy or liver scan. Blood work alone can be unreliable. If there is advancing cirrhosiss then you might want to try the triple approach, but if you don't have much scarring I'd finish school and wait for some of the better drugs in the pipeline. But then again I don't know how or when the Canadian health service will treat the new drugs.
Vern
I'm overwhelmed by all the support. Thank you all so much. I am currently in China and I was treated in China 2 years ago, but right now I'm considering to go back to Canada to get treatment. The reason why I chose China the first time is because I believed it would be beneficial for my career if I learned Chinese. I went to the best hospital in the province, saw the best doctor, and was overall content with my treatment. It would have probably been cheaper to get treated in Canada, but I've heard the medical procedures take much more time, whereas in China, treatment begins instantly, and most of the costs are offset by the cheap cost of living. Althought, I wish I knew about this community earlier so I could have had more time to think about my options.
Today, I consulted a hepatologist, and she told me they don't even have the triple therapy option here. Apparently, the Chinese FDA is currently reenacting the trials, and the earliest boceprevir will be available in China is 2017. She said it's not a good idea to wait that long, so if I wanted to do the triple therapy, I should go to Canada. If I do that, however, I would have wasted all the time and money I've spent on my Bachelor's degree here. She said I could also continue the Peginterferon + Ribavirin and have a 50% chance of being "cured." She also said it's not absolutely necessary to do 2 years of that combo if I achieve SVR within 3 months. If it taks me 6 months or longer to achieve SVR, then I would need to be treated for two years.
I just don't know what to do... should I give up everything I've worked for these few years for the extra 10-20% chance of being "cured" or should I finish my degree and get treatment and see how everything goes after 2 years?
Hi Josh,
Can you tell us where you are living, as your IP address is in China. This will make a big difference to our advice, as Cinnamon Girl has indicated.
Sounds like you responded well. Don't worry about the viral load. I know that's easier said than done. I have some info for relapsers. Most of these clinical trials are for non-responders.
http://www.ihelpc.com/in-the-news/hepatitis-c-clinical-trials-2013/
Best luck to you. You're young and that is on your side. Stay in shape, don't drink, and you're gonna beat this!
xoxo Karen:)
Agreed Get a 2nd opinion You'll see lots of mention of triple thearpy. and alot of trials/ studys that are moveing away from Interferon some will be out 2014-15
I've seen others from Canada here and there are other options I think you'll see many others would tell you the same
Keep in touch please post what the yell you as said alot of experience on this forum. hrodnmryu
BillS
Hello and welcome Josh
Sounds like you should seek out a Hepatologist , and most important; Empower yourself by learning all you can about HCV.
Their all kinds of new therapys coming out in the next two years that will be far superior to what you mentioned.
Read all you can on this site and use the search engine, it's great
Matt
2 years on treatment? Never ever heard of that, i would look into a 2nd opinion. Good luck.
And thank you for the reassurance. :)
You will find answers on the forum
Lots of experience here.
Hi everyone, I just stumbled upon this site, and I'm desperately seeking advice on what to do.
I discovered there was an abnormality with my health in 2009 when I tried to donate blood and the blood was rejected due to a positive HCV count. I was officially diagnosed with Hepatitis C in September 2010 after a liver function test, qualitative test, and quantitative test. At the time, we did not have healthcare in the United States, because I am Canadian (but lived in the US all my life). I went abroad to get treated and the medicine was peginteferon 180 ml + ribavirin (I forget the dosage but it was supposed to be taken 3 times a day) I was SVR'd after 3 months, and continued treatment for a year. 6 months after the last injection and SVR confirmation, I went in for a regular liver check. Doctor said everything was good, so I thought I was officially cleared of this dreaded thing. Recently I haven't been feeling really well, so I went in for a regular liver check and my ALT was really abnormal. I feared the worst and immediately went in for a quantitative HCV test. Turns out I've relapsed with a viral count of 3 x 10^6 IU/ml
The doctor said the only way to treat it now is to do the peginteferon + ribavirin for an extended period of time (2 years)
I've been trying to find some information about successful retreatment plans, but I haven't found any that mention the triple plan OR the 2 years that my doctor suggested. Does anyone have any information on plans for relapsers? My genotype is 1a.
Hi Josh, welcome! You`ve stumbled upon a good place!
Sorry to hear you`ve relapsed, that must have been a big disappointment to you. I must say I`m surprised your doctor has told you that your only option now is to do 2 years of peg and riba. I assumed you were living in the US, can you tell us where you are currently located? That would make a big difference to the treatment options available to you.
All the best, Jill
-- Edited by Cinnamon Girl on Thursday 4th of April 2013 02:55:59 PM