Hi again, Dopey, do let us know how the phone call with your nurse goes.
The problem with these new interferon free treatment combos is that they are quite a lot more expensive, and that applies especially to Harvoni (sofosbuvir + ledipasvir). That`s the same situation elsewhere as well as in the UK. And because of their high cost these drugs are currently being rationed out, with priority being given to people with more advanced fibrosis. But Harvoni and Viekirax have now been approved by NICE for everyone with genotype 1 in the UK, according to the links I gave you, and your medical team will be aware of this.
So even though it`s great news for you that your fibroscan score is so low, it does mean that you`ll have to be very assertive if you don`t want to go down the interferon/riba route again, and it could mean a longer wait. Although with your liver status you do have time to wait.
In the end your choice, and we`re here to support you whatever you do.
Best of luck, try not to worry!!
Dopey said
Oct 31, 2015
Thank you so much everyone I always know I can find the support I need On here.
I will definitely go call my nurse and put all this information to her and see what her response is. the nurse has left it to me to call her with a decision on which treatment I'd want to go for and when.
Tig said
Oct 31, 2015
A couple of things come to mind and I don't want to repeat what the others have said, but I'd like to expound on them a little. The fact that your liver is still in good shape gives you the time to wait for better (easier) options. There is absolutely nothing wrong with your desire to get rid of your life sentence. With the newest treatments, this is no longer a life sentence. It can be stopped and in short order. I have had the displeasure of going through Interferon treatment twice and you won't like it, not one bit. It should be effective, certainly with all of those other drugs they want to give you, but as Gracie mentioned, there can be life long side effects from their use. I'm dealing a number of problems from them. Sure they cured me, but at a cost. If you're healthy enough to wait, I recommend seeking a newer protocol and leaving the Interferon behind.
If you read the info I left below, you will see that the treatment you're being offered is no longer recommended in your case. I know you're in the UK and things are a bit different than the US, but not significantly. The medical professionals all follow the current guidelines, but unfortunately it's the money that often determines their actions. But regardless of difference, they are avoiding the use of Interferon/Riba if there are better options available. That's because the new DAA's are far easier, have better rates of success and often offer shorter courses of treatment. The side effects are also easier to deal with during treatment. Some people are experiencing lingering joint and muscle pain with the Sovaldi (Sofosbuvir) combos, but many aren't experiencing any problems at all. If you add Interferon and Ribavirin to any combination, you will experience far more side effects than I believe you want. If you're responsible for children and a husband that depend on your help daily, you should know that the Interferon/Ribavirin combos will among other things, cause anemia, extreme fatigue and can cause you some emotional distress. Basically, it can make life a challenge, even on a good day.
Ultimately the choice is yours and all we can do is share our thoughts and experiences. Do your homework and question everything. Your doctors should be willing to explain your options and should absolutely know what the current recommended treatments are and what are soon to be released. If you meet a doctor that doesn't understand your desire to seek the best, shortest and easiest treatment available, you need to seek additional counsel. You are always welcome to ask us anything and we'll do our best to help you find an answer. Best of luck to you!
Gracie said
Oct 31, 2015
Totally get it! I've been waiting for the SVR day for a long long time and hope it's coming up soon. Can you try for harvoni or Vic Pak? Both of those have over 90% cure rates and no RIBA/int. Very tolerable symptoms that are much easier. One pill a day for harvoni.
Dopey said
Oct 31, 2015
Hmmmmm yes I could wait. I know it's irrational but I just want to rid myself of this life sentence. i know my mum was diagnosed too late (she already had cirrhosis) but sometimes it feels like the wait and see approach is suffocating.
I just can't explain it I'm a positive person the glass half full and all! But in these dark moments can sometimes feel overwhelming. And I just can't afford to sink in self pity with young kids and a husband who is dependent on me (registered blind)
i know I sound ungrateful and whingy but I just can't explain it. I should be and am extremely grateful to god that I am still in very good health.
Gracie said
Oct 31, 2015
I would for sure wait. There are lasting side effects with RIBA/inf that you may want to avoid. Tinnitus, joint pain ... With no fibrosis, waiting for a newer - much shorter duration DAA would be in your best interest (IMO). Not everybody gets these lasting symptoms of course, but some do and they are very real.
best of luck to you ...
Cinnamon Girl said
Oct 31, 2015
Hello again Dopey, yes I think I would ask about one of the new non-interferon treatments, if I was in your position.
I`m sure you must be impatient to start another treatment to rid yourself of this virus, but with such a healthy liver you don`t need to be in a hurry, you have time to wait.
When are you seeing your nurse again?
Dopey said
Oct 30, 2015
Thank you for the prompt replies. Fortunately my liver is still in good condition with the last fibroscan showing No fibrosis.
Cinnamon I am being offered both the drugs WITH ribavirin and interferon. And these were the only 2 she's mentioned. Do you think I should ask for the availability of the others?
Cinnamon Girl said
Oct 30, 2015
Just to add to what I said, the treatment with sofosbuvir would be in a combination with another drug called `ledipasvir`, and together they are known as Harvoni. As you are tx experienced without cirrhosis (I`m assuming you haven`t progressed that far in the last 2 years) the alternate choice, according to the NICE guidelines, would be Viekirax, which would also be for 12 weeks, and your chances of success would be excellent for both of those 2 drug regimes.
Do let us know if we can help any further with all of this, I know it must be confusing. Treatment options have moved forward at some speed since you were here last time, even in the UK!
Here`s another link about the new `all oral` treatments now available in the UK, and note that it says this..."All those with genotypes 1 and 4, should now be able to access the new non-interferon based treatments with shorter treatment times and less severe side effects."
Try not to worry, it will all become clear soon enough, and you`ll be on your way to clearing the virus once and for all.
Tig said
Oct 30, 2015
Have they tested you for RAV's? I'm sorry you're having a hard time making this decision, but hopefully we may be able to help you with that decision. The current guidelines recommend against using the Peg/Riba combo along with anything else, in favor of the DAA (all orals). I'll give you a link to some information. I would still request the RAV testing, so you can determine the length of treatment recommended and any other considerations that might be made with that information. Are you cirrhotic? That makes a difference too. Looks like Jill has provided you with some information too. This will hopefully make your decision easier and let you get some sleep tonight! Good luck!
I`m very glad you`re planning your next treatment, and now is the best time to go for it since the new NICE recommendations came out earlier this month for `all oral` treatments in the UK. I must say I agree with your nurse that Sofosbuvir would be your best option, and you wouldn`t have to do Peg interferon + ribavirin with it. Simeprivir is no longer amongst the recommended treatment regimes, so I`m surprised you you were offered it as an alternative.
Here`s a link to the new treatment guidelines for the UK..
As I remember, you don`t have advanced fibrosis as of your last fibroscan. Have you had a more recent one since then?
Good to hear from you again, and best of luck!
Dopey said
Oct 30, 2015
Hi and hope hope everyone is well. I've not posted in a very long time after failing treatment twice I just decided to hide away (easier than facing reality).
Anyway ive been offered a chance to try treatment again. Now I'm really stressed I've been given the choice between sovosfibir and simemprivir with the old poisons riba and interferon. Now I can't decide which one to go for I'm losing sleep over making the wrong choice. The nurse recommended sovosfobir as this is 12 weeks as opposed to the simemprivir which is 24 weeks. Anyone out there can help with thoughts I'd be grateful
Hi again, Dopey, do let us know how the phone call with your nurse goes.
The problem with these new interferon free treatment combos is that they are quite a lot more expensive, and that applies especially to Harvoni (sofosbuvir + ledipasvir). That`s the same situation elsewhere as well as in the UK. And because of their high cost these drugs are currently being rationed out, with priority being given to people with more advanced fibrosis. But Harvoni and Viekirax have now been approved by NICE for everyone with genotype 1 in the UK, according to the links I gave you, and your medical team will be aware of this.
So even though it`s great news for you that your fibroscan score is so low, it does mean that you`ll have to be very assertive if you don`t want to go down the interferon/riba route again, and it could mean a longer wait. Although with your liver status you do have time to wait.
In the end your choice, and we`re here to support you whatever you do.
Best of luck, try not to worry!!
Thank you so much everyone I always know I can find the support I need On here.
I will definitely go call my nurse and put all this information to her and see what her response is. the nurse has left it to me to call her with a decision on which treatment I'd want to go for and when.
A couple of things come to mind and I don't want to repeat what the others have said, but I'd like to expound on them a little. The fact that your liver is still in good shape gives you the time to wait for better (easier) options. There is absolutely nothing wrong with your desire to get rid of your life sentence. With the newest treatments, this is no longer a life sentence. It can be stopped and in short order. I have had the displeasure of going through Interferon treatment twice and you won't like it, not one bit. It should be effective, certainly with all of those other drugs they want to give you, but as Gracie mentioned, there can be life long side effects from their use. I'm dealing a number of problems from them. Sure they cured me, but at a cost. If you're healthy enough to wait, I recommend seeking a newer protocol and leaving the Interferon behind.
If you read the info I left below, you will see that the treatment you're being offered is no longer recommended in your case. I know you're in the UK and things are a bit different than the US, but not significantly. The medical professionals all follow the current guidelines, but unfortunately it's the money that often determines their actions. But regardless of difference, they are avoiding the use of Interferon/Riba if there are better options available. That's because the new DAA's are far easier, have better rates of success and often offer shorter courses of treatment. The side effects are also easier to deal with during treatment. Some people are experiencing lingering joint and muscle pain with the Sovaldi (Sofosbuvir) combos, but many aren't experiencing any problems at all. If you add Interferon and Ribavirin to any combination, you will experience far more side effects than I believe you want. If you're responsible for children and a husband that depend on your help daily, you should know that the Interferon/Ribavirin combos will among other things, cause anemia, extreme fatigue and can cause you some emotional distress. Basically, it can make life a challenge, even on a good day.
Ultimately the choice is yours and all we can do is share our thoughts and experiences. Do your homework and question everything. Your doctors should be willing to explain your options and should absolutely know what the current recommended treatments are and what are soon to be released. If you meet a doctor that doesn't understand your desire to seek the best, shortest and easiest treatment available, you need to seek additional counsel. You are always welcome to ask us anything and we'll do our best to help you find an answer. Best of luck to you!
Totally get it! I've been waiting for the SVR day for a long long time and hope it's coming up soon. Can you try for harvoni or Vic Pak? Both of those have over 90% cure rates and no RIBA/int. Very tolerable symptoms that are much easier. One pill a day for harvoni.
Hmmmmm yes I could wait. I know it's irrational but I just want to rid myself of this life sentence. i know my mum was diagnosed too late (she already had cirrhosis) but sometimes it feels like the wait and see approach is suffocating.
I just can't explain it I'm a positive person the glass half full and all! But in these dark moments can sometimes feel overwhelming. And I just can't afford to sink in self pity with young kids and a husband who is dependent on me (registered blind)
i know I sound ungrateful and whingy but I just can't explain it. I should be and am extremely grateful to god that I am still in very good health.
I would for sure wait. There are lasting side effects with RIBA/inf that you may want to avoid. Tinnitus, joint pain ... With no fibrosis, waiting for a newer - much shorter duration DAA would be in your best interest (IMO). Not everybody gets these lasting symptoms of course, but some do and they are very real.
best of luck to you ...
Hello again Dopey, yes I think I would ask about one of the new non-interferon treatments, if I was in your position.
I`m sure you must be impatient to start another treatment to rid yourself of this virus, but with such a healthy liver you don`t need to be in a hurry, you have time to wait.
When are you seeing your nurse again?
Thank you for the prompt replies. Fortunately my liver is still in good condition with the last fibroscan showing No fibrosis.
Cinnamon I am being offered both the drugs WITH ribavirin and interferon. And these were the only 2 she's mentioned. Do you think I should ask for the availability of the others?
Just to add to what I said, the treatment with sofosbuvir would be in a combination with another drug called `ledipasvir`, and together they are known as Harvoni. As you are tx experienced without cirrhosis (I`m assuming you haven`t progressed that far in the last 2 years) the alternate choice, according to the NICE guidelines, would be Viekirax, which would also be for 12 weeks, and your chances of success would be excellent for both of those 2 drug regimes.
Do let us know if we can help any further with all of this, I know it must be confusing. Treatment options have moved forward at some speed since you were here last time, even in the UK!
Here`s another link about the new `all oral` treatments now available in the UK, and note that it says this..."All those with genotypes 1 and 4, should now be able to access the new non-interferon based treatments with shorter treatment times and less severe side effects."
http://hepctrust.org.uk/news/oct-2015/nice-announce-criteria-access-daklinza-harvoni-viekirax-and-exviera
Try not to worry, it will all become clear soon enough, and you`ll be on your way to clearing the virus once and for all.
Have they tested you for RAV's? I'm sorry you're having a hard time making this decision, but hopefully we may be able to help you with that decision. The current guidelines recommend against using the Peg/Riba combo along with anything else, in favor of the DAA (all orals). I'll give you a link to some information. I would still request the RAV testing, so you can determine the length of treatment recommended and any other considerations that might be made with that information. Are you cirrhotic? That makes a difference too. Looks like Jill has provided you with some information too. This will hopefully make your decision easier and let you get some sleep tonight! Good luck!
http://www.hepatitisc.uw.edu/go/treatment-infection/treatment-genotype-1/core-concept/all
http://www.hcvguidelines.org/node/71
Hello again, Dopey, welcome back!
I`m very glad you`re planning your next treatment, and now is the best time to go for it since the new NICE recommendations came out earlier this month for `all oral` treatments in the UK. I must say I agree with your nurse that Sofosbuvir would be your best option, and you wouldn`t have to do Peg interferon + ribavirin with it. Simeprivir is no longer amongst the recommended treatment regimes, so I`m surprised you you were offered it as an alternative.
Here`s a link to the new treatment guidelines for the UK..
http://hepctrust.org.uk/new-treatments-genotype-1-determined-nice-october-2015
As I remember, you don`t have advanced fibrosis as of your last fibroscan. Have you had a more recent one since then?
Good to hear from you again, and best of luck!
Hi and hope hope everyone is well. I've not posted in a very long time after failing treatment twice I just decided to hide away (easier than facing reality).
Anyway ive been offered a chance to try treatment again. Now I'm really stressed I've been given the choice between sovosfibir and simemprivir with the old poisons riba and interferon. Now I can't decide which one to go for I'm losing sleep over making the wrong choice. The nurse recommended sovosfobir as this is 12 weeks as opposed to the simemprivir which is 24 weeks. Anyone out there can help with thoughts I'd be grateful
im genotype 1b previous null responder.