Hepatitis c treatment length for triple therapy with Telaprevir (Incivek/Incivo)
Biggyb said
Dec 10, 2013
Erix wrote:
I don't want to experience same shock I had 6 months after the first therapy, when doctor said the words "unfortunately... positive again".
I know the feeling, this time i am fully prepared for them words. I pray i don't hear them, but i can handle it now..
Erix said
Dec 10, 2013
Thank you my friends! Sometimes when you have a dilemma and make your own decision based on information you have, it is important that some other competent people tell you that you made a right decision. I asked for advice some other doctors, but typical answer was that I have to do what my doctor said. Nobody wants to take a risk, and that's understandable.
Decision is made - today I'm finishing the therapy, therefore keep your fingers crossed for me next 6 months. I don't want to experience same shock I had 6 months after the first therapy, when doctor said the words "unfortunately... positive again". Only then I got to know about gene IL28B, and understood what happened.
Regarding therapy costs - I know that in many European countries DAAs are not offered for free, but I believe that in all other EU countries patients don't pay for Interferon and Ribavirin. At least not 1/3 or more of the monthly income. The infection risk in Latvia is one of the highest in Europe, and when new people are infected, they are in hopeless situation. I come from a country side where people earn only 300-350 US $ per moth and that's how much the basic therapy costs. Even if patients have a very good chance to be cured (CC genotype and not the virus genotype 1), they have to live with the virus with a risk to infect somebody else. That's wrong. We have to continue this discussion in another topic.
Biggyb said
Dec 9, 2013
Welcome Erix, keep us posted to your TX. Hang in there.
mallani said
Dec 9, 2013
Hi again Erix,
Thanks for the additional information. Even if you're a prior relapser with the TT genotype, if you were Undetected at 4 and 12 weeks you qualify for RGT, which means a treatment length of 24 weeks. You are young, with a fairly low VL, so your chances of SVR are high.
As Jill said, portal fibrosis without bridging fibrosis means you are F2, so treatment length is not affected.
Latvia is not the only EU country where access to DAAs is expensive. In Spain, only cirrhotics can access Boceprevir (Victrelis) or telaprevir (Incivek).
If it was me, I'd stop Rx after 24 weeks. Best of luck. Cheers.
Cinnamon Girl said
Dec 9, 2013
Hi Erix, welcome from me too. Good to hear you`re active in the fight for free treatment in your country, and we`ll look forward to getting to know you better.
The incivek protocols indicate that 24 weeks on treatment should be enough after being undetected at weeks 4 and 12, even though you relapsed 6 months after your previous course of treatment. As I understand it, portal fibrosis is non-cirrhotic and so still early stage liver damage, so I don`t think it would affect the length of tx, but that`s something Malcolm (mallini) will be able to tell you more about.
Best of luck, keep in touch.
Erix said
Dec 9, 2013
Hello! According to USA Today Riga is a "must see" place in Europe. But unfortunately Latvia is the only EU member, where patients have to pay for HCV treatment drugs. Monthly costs for Interferon and Ribavirin are about 320 US$, what makes 1/3 of average salary here (the remaining 75% are paid by state). But new drugs like Telaprevir or Boceprevir are too expensive for our government and patients have to pay 100% of these costs (only 2 patients from 1600 new discovered cases had such money within last year). That's why many people like me are leaving the country to work and get free treatment in other European countries. Some people don't come back.
I'm one of the activists, who is fighting for free treatment with effective drugs here in Latvia, therefore I will be an active forum member. In Latvia dentists don't use B type autoclave to sterilize high risk instruments after each patient, and people are infected even in hospitals. Especially during heart surgery, when doctors sterilize and use again expensive disposal instruments (according to producer instructions these instruments are for single use and can't be sterilized).
I forgot to tell that my liver is comparatively good - biopsy shows that there is a portal fibrosis (not the bridging fibrosis yet). Viral load before second treatment was 690 000 IU/ml, ALAT 57, but 4 weeks after triple therapy beginning the virus was undetected. Same result after 12 weeks of treatment and most probably such result will be after 24 weeks of treatment. The guidelines I can find in internet confirm the words of my Norwegian doctor and I'm going to finish the therapy after 2 days. But I'm still confused that my Latvian doctor insists on 48 weeks treatment, saying that it's a guideline from Telaprevir producer for patients like me. I hope that Latvian doctor has less experience with Telaprevir and therefore misunderstood something, but strange thing is that it was a group of doctors (council), which decided regarding 48 weeks therapy. Then it's not only one men mistake.
I explained to myself that there is no need to continue with another 24 weeks with Ribavirin + Interferon as the first therapy clearly showed that combination of these two drugs can't kill the virus in me. The mutation of the virus can resist until the day, when I will finish with drugs, and then the reproduction of viruses will start again. The only hope is that virus is already killed by Telaprevir, but if so, there is no need to continue poisoning of my organism. Am I right?
mallani said
Dec 9, 2013
Hi Erix,
Welcome to the Forum. We had 3 weeks in Riga and Jurmala 2 years ago, and thoroughly enjoyed your country.
Can you tell us your Viral Load, before treatment, after 4 and 12 weeks of treatment? IL28B genotype TT is the one that is least responsive to Interferon, so your doctor in Latvia may be using that as a guide. As a previous relapser, this is also taken into account. If you were Undetected after 4 weeks of Telaprevir, and stayed Undetected at week 12, the standard course is 24 weeks of treatment. If you have significant liver damage ( by biopsy or Fibroscan), 48 weeks is the recommended treatment length. If we know your Viral Load results, we could give better advice. Cheers.
Erix said
Dec 9, 2013
I started the second therapy (Ribavirin+Interferon+Telaprevir) in Norway, but during the therapy moved back to Latvia, and have now two different recommendations from doctors regarding the therapy length. Norwegian doctor says that therapy can be finished after 24 weeks while the doctor in Latvia says that I have to continue with Ribavirin and Interferon another 24 weeks with total therapy length 48 weeks.
I have virus genotype 1 and Im a prior relapse patient (during the first therapy with Ribavirin+Interferon the virus was under detection level 3 months after the start of therapy and was not found also after 48 weeks, but was fount 6 months after therapy again. Gene IL28B subtype is TT, but as I understand this fact shouldnt change the length of treatment.
What kind of experience you have in other countries? Should I finish the therapy according to Norwegian doctor recommendations, or do I have to continue 48weeks?
I know the feeling, this time i am fully prepared for them words. I pray i don't hear them, but i can handle it now..
Decision is made - today I'm finishing the therapy, therefore keep your fingers crossed for me next 6 months. I don't want to experience same shock I had 6 months after the first therapy, when doctor said the words "unfortunately... positive again". Only then I got to know about gene IL28B, and understood what happened.
Regarding therapy costs - I know that in many European countries DAAs are not offered for free, but I believe that in all other EU countries patients don't pay for Interferon and Ribavirin. At least not 1/3 or more of the monthly income. The infection risk in Latvia is one of the highest in Europe, and when new people are infected, they are in hopeless situation. I come from a country side where people earn only 300-350 US $ per moth and that's how much the basic therapy costs. Even if patients have a very good chance to be cured (CC genotype and not the virus genotype 1), they have to live with the virus with a risk to infect somebody else. That's wrong. We have to continue this discussion in another topic.
Welcome Erix, keep us posted to your TX. Hang in there.
Hi again Erix,
Thanks for the additional information. Even if you're a prior relapser with the TT genotype, if you were Undetected at 4 and 12 weeks you qualify for RGT, which means a treatment length of 24 weeks. You are young, with a fairly low VL, so your chances of SVR are high.
As Jill said, portal fibrosis without bridging fibrosis means you are F2, so treatment length is not affected.
Latvia is not the only EU country where access to DAAs is expensive. In Spain, only cirrhotics can access Boceprevir (Victrelis) or telaprevir (Incivek).
If it was me, I'd stop Rx after 24 weeks. Best of luck. Cheers.
Hi Erix, welcome from me too. Good to hear you`re active in the fight for free treatment in your country, and we`ll look forward to getting to know you better.
The incivek protocols indicate that 24 weeks on treatment should be enough after being undetected at weeks 4 and 12, even though you relapsed 6 months after your previous course of treatment. As I understand it, portal fibrosis is non-cirrhotic and so still early stage liver damage, so I don`t think it would affect the length of tx, but that`s something Malcolm (mallini) will be able to tell you more about.
Best of luck, keep in touch.
Hello! According to USA Today Riga is a "must see" place in Europe. But unfortunately Latvia is the only EU member, where patients have to pay for HCV treatment drugs. Monthly costs for Interferon and Ribavirin are about 320 US$, what makes 1/3 of average salary here (the remaining 75% are paid by state). But new drugs like Telaprevir or Boceprevir are too expensive for our government and patients have to pay 100% of these costs (only 2 patients from 1600 new discovered cases had such money within last year). That's why many people like me are leaving the country to work and get free treatment in other European countries. Some people don't come back.
I'm one of the activists, who is fighting for free treatment with effective drugs here in Latvia, therefore I will be an active forum member. In Latvia dentists don't use B type autoclave to sterilize high risk instruments after each patient, and people are infected even in hospitals. Especially during heart surgery, when doctors sterilize and use again expensive disposal instruments (according to producer instructions these instruments are for single use and can't be sterilized).
I forgot to tell that my liver is comparatively good - biopsy shows that there is a portal fibrosis (not the bridging fibrosis yet). Viral load before second treatment was 690 000 IU/ml, ALAT 57, but 4 weeks after triple therapy beginning the virus was undetected. Same result after 12 weeks of treatment and most probably such result will be after 24 weeks of treatment. The guidelines I can find in internet confirm the words of my Norwegian doctor and I'm going to finish the therapy after 2 days. But I'm still confused that my Latvian doctor insists on 48 weeks treatment, saying that it's a guideline from Telaprevir producer for patients like me. I hope that Latvian doctor has less experience with Telaprevir and therefore misunderstood something, but strange thing is that it was a group of doctors (council), which decided regarding 48 weeks therapy. Then it's not only one men mistake.
I explained to myself that there is no need to continue with another 24 weeks with Ribavirin + Interferon as the first therapy clearly showed that combination of these two drugs can't kill the virus in me. The mutation of the virus can resist until the day, when I will finish with drugs, and then the reproduction of viruses will start again. The only hope is that virus is already killed by Telaprevir, but if so, there is no need to continue poisoning of my organism. Am I right?
Hi Erix,
Welcome to the Forum. We had 3 weeks in Riga and Jurmala 2 years ago, and thoroughly enjoyed your country.
Can you tell us your Viral Load, before treatment, after 4 and 12 weeks of treatment? IL28B genotype TT is the one that is least responsive to Interferon, so your doctor in Latvia may be using that as a guide. As a previous relapser, this is also taken into account. If you were Undetected after 4 weeks of Telaprevir, and stayed Undetected at week 12, the standard course is 24 weeks of treatment. If you have significant liver damage ( by biopsy or Fibroscan), 48 weeks is the recommended treatment length. If we know your Viral Load results, we could give better advice. Cheers.
I started the second therapy (Ribavirin+Interferon+Telaprevir) in Norway, but during the therapy moved back to Latvia, and have now two different recommendations from doctors regarding the therapy length. Norwegian doctor says that therapy can be finished after 24 weeks while the doctor in Latvia says that I have to continue with Ribavirin and Interferon another 24 weeks with total therapy length 48 weeks.
I have virus genotype 1 and Im a prior relapse patient (during the first therapy with Ribavirin+Interferon the virus was under detection level 3 months after the start of therapy and was not found also after 48 weeks, but was fount 6 months after therapy again. Gene IL28B subtype is TT, but as I understand this fact shouldnt change the length of treatment.
What kind of experience you have in other countries? Should I finish the therapy according to Norwegian doctor recommendations, or do I have to continue 48weeks?