Hi Janine, welcome from me too! Great news to hear that you`ve got into a trial with Sofosbuvir and if you can avoid interferon so much the better. Genotype 1 usually needs another drug along with Sofosbuvir apart from ribavirin to make it more effective, and as you are not doing interferon I`m wondering if it will be a trial for Sofosbuvir/Ledipasvir fixed dose combo?
I`ve had a quick search in the clinical trials website and I can see there are trials being held for that combo in New Zealand, and so wonder if that`s what you`ll be doing. Your particular trial may not be listed yet, and I`m not sure whether you fit into any of these categories, but here`s what I`ve found so far...
Wishing you all the best of luck, and look forward to hearing from you again!
Tig said
Mar 18, 2014
Hi Janine,
Welcome to the forum. We're glad to have you here and will try to provide some opinions on your treatment options. First, do you know what genotype you have? It's either 1A or 1B. There is one form of the genotyping process that doesn't specify which of the two it is, it just identifies it as 1a/1b. There are some minor differences in success rates with treatment but it's not important at this point. Your doctor could provide you with that information when requested. You should strive to obtain copies of all of your lab test results and keep them on file.
I wasn't aware there were any trials being run in New Zealand utilizing Sovaldi alone at this time. Do you happen to know the name of the trial? The reason I ask is because previous trials already determined that Sovaldi (Sofosbuvir) needs to be taken with Peg Interferon and Ribavirin, or with Olysio (with or without Ribavirin) for genotype 1 HCV. While Sovaldi and Olysio are considered off label treatments, it has proven to be one of the most effective options and with fewer side effects than anything with Interferon. I encourage you to seek more information from the prescribing doctor on that. We have a lot of information here on the forum, use our search function at the top center of each page and you'll find more data on the subject.
Good luck and if you have any additional information you'd like to share, like your blood tests, AST, ALT, biopsy, etc., it will help us provide you with better informed opinions. Stay in touch!
Tig
longld said
Mar 17, 2014
Janine,
Many of us on the site are using Sovaldi (mktg name) and Ribavirin successfully - I and many more are not in a 'trial' either. While they still have some issues, it would appear that they have much less than the older treatments. Search through the website and you will see multiple posts on this experience.
lee
Terry said
Mar 17, 2014
Hi Janine I just read your post so welcome to a great site. I personally did not try the sofosbuvir trial drugs as I just finished with the Abbvie Turquois II trial. I also refused to do the Interferon and held out for the new treatments and you are taking the best treatment out there so don't worry. I am sure you will hear from some of the ones that just did that trial. Take care Terry
Jayzcatt said
Mar 17, 2014
Hi everyone my name is Janine I have hep c genotype 1a/1b I am awaiting news of when I will start my trial with sofosbuvir, has anyone out there got some advice anything really, I refused the interferon due to being told that it would more than likely not help me have just come from my specialist today he informed me that this trial would be more helpful and less stressful. It would be nice to hear from someone that has used this drug maybe put me at ease I wil
Hi Janine, welcome from me too! Great news to hear that you`ve got into a trial with Sofosbuvir and if you can avoid interferon so much the better. Genotype 1 usually needs another drug along with Sofosbuvir apart from ribavirin to make it more effective, and as you are not doing interferon I`m wondering if it will be a trial for Sofosbuvir/Ledipasvir fixed dose combo?
I`ve had a quick search in the clinical trials website and I can see there are trials being held for that combo in New Zealand, and so wonder if that`s what you`ll be doing. Your particular trial may not be listed yet, and I`m not sure whether you fit into any of these categories, but here`s what I`ve found so far...
http://www.clinicaltrials.gov/ct2/show/NCT01826981?term=sofosbuvir+new+zealand&rank=5
Wishing you all the best of luck, and look forward to hearing from you again!
Hi Janine,
Welcome to the forum. We're glad to have you here and will try to provide some opinions on your treatment options. First, do you know what genotype you have? It's either 1A or 1B. There is one form of the genotyping process that doesn't specify which of the two it is, it just identifies it as 1a/1b. There are some minor differences in success rates with treatment but it's not important at this point. Your doctor could provide you with that information when requested. You should strive to obtain copies of all of your lab test results and keep them on file.
I wasn't aware there were any trials being run in New Zealand utilizing Sovaldi alone at this time. Do you happen to know the name of the trial? The reason I ask is because previous trials already determined that Sovaldi (Sofosbuvir) needs to be taken with Peg Interferon and Ribavirin, or with Olysio (with or without Ribavirin) for genotype 1 HCV. While Sovaldi and Olysio are considered off label treatments, it has proven to be one of the most effective options and with fewer side effects than anything with Interferon. I encourage you to seek more information from the prescribing doctor on that. We have a lot of information here on the forum, use our search function at the top center of each page and you'll find more data on the subject.
Good luck and if you have any additional information you'd like to share, like your blood tests, AST, ALT, biopsy, etc., it will help us provide you with better informed opinions. Stay in touch!
Tig
Janine,
Many of us on the site are using Sovaldi (mktg name) and Ribavirin successfully - I and many more are not in a 'trial' either. While they still have some issues, it would appear that they have much less than the older treatments. Search through the website and you will see multiple posts on this experience.
lee
Hi Janine I just read your post so welcome to a great site. I personally did not try the sofosbuvir trial drugs as I just finished with the Abbvie Turquois II trial. I also refused to do the Interferon and held out for the new treatments and you are taking the best treatment out there so don't worry. I am sure you will hear from some of the ones that just did that trial. Take care Terry
Hi everyone my name is Janine I have hep c genotype 1a/1b I am awaiting news of when I will start my trial with sofosbuvir, has anyone out there got some advice anything really, I refused the interferon due to being told that it would more than likely not help me have just come from my specialist today he informed me that this trial would be more helpful and less stressful. It would be nice to hear from someone that has used this drug maybe put me at ease I wil
Thanks Janine