Thank you all so much! Congratulations to those of you who beat the dragon! Jim, Tim, Jill, Tig, Gator - - how wonderful for you and your loved ones!!!
Isiscat is right... it goes without saying that achieving SVR is worth it! My real question is if you felt improvements physically, emotionally, energetically, etc. And you gave me answers that I was hoping for.
Of course there is no way to know what will happen with my aches and pains or if they're HCV related, but I do know that I am going to do everything I can to get on Harvoni. I have been waiting a LONG time for a treatment that has a good chance of freeing me from the virus and maybe spare my liver (and who knows what other body parts) from further damage.
To echo what others said, it doesn't matter how anyone caught HCV. Nobody I know has lived a perfect life.
Thanks again to everyone. I am very happy to have found this place!
Josh Haynie said
Nov 12, 2014
I look at it this way :)
SVR is like beating something you want to beat ..... Its a goal .... like finishing a race
all the sacrifices of staying healthy ,,not drinking,,, quitting cigaretes ...... are not made in vain.....
getting SVR is the goal......... do i feel any side affects from my Hep C that ive had since 2002 ??? no i dont.... maybe slower healing on cuts .....
but the mere fact i know that son of a bi..:) is in me .. makes me say your days are numberd dragon i will kick your ass and not relent untill i have smote your ruin upon the rock :)
then i shall drink a beer and laugh :) but yes no matter how long the battle and sacrifices ... or the waiting..... There is no surrender or compromise...
I do not like you hep c i am... i will not eat with green eggs or ham... i do not like you in a boat ... while im wearing my coat....
i dont like you hep C... Its a goal.... set a goal make a plan... execute plan.. get outcome .... and then you look back and admire the work that went into it... was it worth it ? of course it was i pland and executed it to the outcome i wanted to get ......
so I say good luck to us all :) in all our endeavours and that you may call upon me when ever you wish for my opinion or help with anything you want help with ...
brought to you by THE TEAM WORK NETWORK :)
Gator Man said
Nov 12, 2014
Is SVR worth it? No debate, hands down I would do it again with S/O or Harvoni today. Would I take a therapy that included interferon if that was my only option? Now that I have cirrhosis, probably yes, although I would have to give considerable thought to 24 or 48 weeks with a significant chance of treatment failure. Since I had problems with Inf/Riba in the past, the Incivek/Victrelis triple therapies were not considered good options.
Do I feel better? Yes, although my symptoms with progressive liver disease were relatively subtle. In hindsight, I realize that I probably had physical effects from HCV and cirrhosis, but was in some degree of denial waiting for better treatment options.
Angel, no offense and it doesn't matter how you got here. Smoking for 30 years is one of my bad choices (I won't mention my equivalents to Isiscat's drummer), perhaps causing worse damage than HCV in the long run. Even though I've quit for three years, lung cancer and heart disease maybe as significant of a risk as HCC and liver failure as I grow older.
I can't take back the years of smoking or alcohol use and its consequences in my ignorance of HCV, but I can take steps to improve my health today. It was almost a year ago when I started with my hepatologist who put me on S/O, almost two years to the day that I quit cigarettes. Even if I keel over tomorrow, they are the best things I've ever done to improve my sense of wellness at this stage in life. Get on Harvoni Tess, and slay the dragon for good!
-- Edited by Gator Man on Wednesday 12th of November 2014 09:05:30 PM
Tig said
Nov 12, 2014
Is it worth it? Absolutely! Was it a tough journey? Definitely! The things along the way were silent, but progressive and I knew it. I educated myself and learned that I could only delay doing something about it for so long. The odds were beginning to go against me and I wasn't feeling good, more and more often. As was mentioned, the odds seemed to be grouped into thirds and the way I was feeling, I didn't believe I was in the third that would walk through this without experiencing more problems, serious problems. I decided if I was going to try and beat this, I had better get serious and do something about it. I went through IFN tx twice, monotherapy in the 90's and just completed IFN/Riba/Victrelis treatment successfully one year ago in December. If I had known that Sovaldi was so close to release I may have waited, but HCV treatment (in general) has always been developing, with more and better protocols being promised. So I didn't know when something better was actually going to come along. I knew waiting for the day that something perfect did come along, may likely come with a cost of lower odds of success, as well as increased problems in the way of liver disease itself but increased hepatic manifestations. Waiting was no longer an option in my mind, so I decided the IFN journey again, but this time with the aid of additional drugs was worth the effort and physical toll I knew I'd have to experience. It wasn't entirely pleasant, but it was also entirely doable and I'm glad I did it. Just knowing I accomplished that goal makes me feel better and I'm thankful knowing that HCV or something it caused won't be responsible for early death or disease...
Tig
Cinnamon Girl said
Nov 12, 2014
Tess wrote:
Hi,
I am a 60 year old woman and have had Hep C for 32 years, supposedly from a blood transfusion in '82. Was diagnosed in 2001 after checking for Lyme Disease due to chronic neck pain. No Lyme, but they found HCV. Since then I have been monitored with regular biopsies and blood work. Moderate fibrosis. No cirrhosis yet. Pain has continued and I can barely move my neck from side to side. I have also been depressed and have other joint pain, but don't know if it is related to HCV or age and injuries :) Non-gastro docs say it is arthritis.
I didn't want to try treatments that involved ribavirin or interferon and asked my gastro doc to let me know when other treatments are available. Today my doc called to say that I can go on Harvoni (assuming my insurance, Fed Blue, will cover it or if there is another way). My question is.... if the treatment is successful, what have those of you with SVR experienced? Do you feel better? Hoping for some good news!
Thanks
Tess
Hi Tess, welcome to the forum!
To answer your question I would say that most people feel a lot better after achieving SVR, whether in terms of energy levels and general health, or also as far as their emotional and psychological well being is concerned.
For many people clearing the virus leads to a new lease of life, especially if they have had the infection for a long time, and also it takes away many fears about possible progression of liver fibrosis, as well as issues such as who they can trust with their diagnosis, and the worry of whether they run the risk of passing the virus on to others.
For me personally, I had suffered from debilitating fatigue, as well as muscle and joint pain, for many years before I did my treatment, and achieving SVR literally gave me my life back. My energy levels have increased beyond my expectations and my aches and pains have improved significantly.
Wishing you the best of luck with getting your Harvoni treatment approved! Do keep us updated, we`ll look forward to hearing from you again! Jill
hrsetrdr said
Nov 12, 2014
I don't know where my lengthy reply went...so much for posting using he iPad. :-/
Anyway-yes! SVR is worth it no matter what, but not having to use Interferon to get there is a big plus.
I wouldn't make so much of it, if there were effective pain remedies available...
Isiscat2011 said
Nov 12, 2014
Angel67 wrote:
Apologies Isiscat...and anyone else offended.
No problem, Angel. I've certainly made my share of bad choices (that drummer in '76 comes to mind) but I definitely didn't do anything to deserve this and neither did anyone else, IMO, including those who overdid the partying in their youth. Viruses are mostly just the result of bad luck.
My older brother also has HCV and he drinks alcohol much to my dismay. So far his liver is still in better shape than mine. Luck of the draw sometimes.
Angel67 said
Nov 12, 2014
Apologies Isiscat...and anyone else offended. I am one of those stupid fools who basically gave this virus to himself...youth, yes wasted on the young! I just question things and I have to keep questioning until I am happy with the answer. But it's a gamble to think you might get through fine without treatment, though statistically you will probably die of a heart attack before HCV kills you! I just want to beat the living daylights out of the people that run these companies! But I suppose this is where capitalism takes you..."I'm alright Jack" and f@#k everyone else. Their deals with the third world have nothing whatsoever to do with humanity, they can't even conceive what that word means, but I guess it's obsolete these days and soon to be erased from history?
Isiscat2011 said
Nov 12, 2014
Angel: Dude, you are giving a bad rep to those of us who didn't have the honor of shooting drugs, drinking our livers into oblivion, and super-sizing our fries. Believe me when I tell you that the virus itself can cause cirrhosis; if or when that will happen depends on a multitude of factors that don't include lifestyle choices. Genetics, immune systems, and a whole host of bio-chemical factors play a role in HCV induced liver disease progression.
If 100 buddhist monks were infected with the HCV virus, ~ 1/3 would clear it spontaneously. Of the 2/3 who went on to develop chronic HCV ~ 2/3 would develop cirrhosis at some point (usually by age 65) and 1/3 would never get cirrhosis but would die peacefully chanting (or be trampled to death by some random pack of Tibetian mastiffs). I hear what you are saying but don't underestimate the damage the virus can do; it just depends on the host.
The question of is SVR worth it is pretty much guaranteed to yield an affirmative response because nobody would want their HCV back. The better questions (IMHO) are: 1) would you have waited for better tx, and 2) do you feel better with SVR. The answers will be wide and varied depending on people's individual experiences.
There was a UK study that asked patients whether they feel better post tx and as I recall ~half said no. Mind you, these results were a couple of years after Interferon/Riba tx that was usually a year or so in duration. Nobody knows yet what the long term effects of the new DAAs will be. We all have to weigh the potential benefits vs the potential risks (which are not entirely known).
-- Edited by Isiscat2011 on Wednesday 12th of November 2014 05:34:23 PM
JIme said
Nov 12, 2014
Hi Tess,
I had it for over 35 years too and I tried triple tx 3 yrs ago, which failed. That was with interferon and riba and that was not fun. I was lucky enough to get on a trail with what became Harvoni ( Sobusfur ?, 7977 ) I think.
It was worth it. The new drugs were almost without sx for me but 2 years later I feel great. I am healthy and I don't have any lingering effects that I can pinpoint. I feel like it extended my life and raised my quality of life too.
We aren't getting any younger. I would rather fight it sooner than later. ( as long as I didn't have to take interferon I mean. )
Good luck!
Angel67 said
Nov 12, 2014
Hi Tess, I can't see how this virus could be causing neck symptoms? I have had this virus for about 28 years, but was only diagnosed recently. I too am reluctant to take Interferon/Rib....even my consultant told me to hang on for a while ( my liver has some damage but nothing too alarming, of course this is subject to change) till better drugs come along. It's a hard choice to make...turning down treatment that is corrosive and perhaps more damaging than the illness. I do wonder if the whole medical profession, drug companies etc are hyping up Hep C? I don't say this lightly, but clearly there are riches beyond belief at stake here....billionaires are being made! I think that all of a sudden every ailment, illness, malady is because of Hepatitis, for instance, a life long heavy drinker may present with Cirrhosis and viral Hepatitis c...all of a sudden it's the Hep c that caused the Cirrhosis and nothing at all to do with alcohol. The same goes with the obese patient. How much of our liver damage is down to Hep c and how much of it is a lifestyle choice? If a person drank like a fish, ate like a hog and never exercised, in time you would expect this person to have liver disease, but chuck in HCV and everyone points to the virus as the cause...I feel this is encouraged by the drug companies and doctors. This idea won't go down well with many people as it's easier to blame a virus than ones own life choices. I am torn between believing what the doctors say and what I am starting to suspect. Personally I think my own Steatosis and liver fibrosis has been caused by excess alcohol consumption and a very poor diet. Liver disease is becoming endemic in western nations, particularly north America, and poor diet is responsible for most of it, not HCV. If we add this virus into the equation of poor nutrition, high alcohol intake, lack of exercise and even drug use, how can we ever know what has caused the liver degradation? From what people have said about treatments and ridding themselves of the virus, I think most are very happy to see the back of it. If you can get your hands on the modern drugs, then I would say it was worth taking them...but Interferon/Rib is something you will have to think long and hard about. I have had some people telling me I should just bite the bullet and take the damned stuff, while others have told DON'T TAKE IT! Personally I will hold on for some time, watch my health and hope that the grotesquely avaricious drug companies lower their bloated and extortionate prices of these "apparent" life saving drugs....fingers crossed!
-- Edited by Angel67 on Wednesday 12th of November 2014 12:33:19 PM
Tess said
Nov 12, 2014
Hi,
I am a 60 year old woman and have had Hep C for 32 years, supposedly from a blood transfusion in '82. Was diagnosed in 2001 after checking for Lyme Disease due to chronic neck pain. No Lyme, but they found HCV. Since then I have been monitored with regular biopsies and blood work. Moderate fibrosis. No cirrhosis yet. Pain has continued and I can barely move my neck from side to side. I have also been depressed and have other joint pain, but don't know if it is related to HCV or age and injuries :) Non-gastro docs say it is arthritis.
I didn't want to try treatments that involved ribavirin or interferon and asked my gastro doc to let me know when other treatments are available. Today my doc called to say that I can go on Harvoni (assuming my insurance, Fed Blue, will cover it or if there is another way). My question is.... if the treatment is successful, what have those of you with SVR experienced? Do you feel better? Hoping for some good news!
Thank you all so much! Congratulations to those of you who beat the dragon! Jim, Tim, Jill, Tig, Gator - - how wonderful for you and your loved ones!!!
Isiscat is right... it goes without saying that achieving SVR is worth it! My real question is if you felt improvements physically, emotionally, energetically, etc. And you gave me answers that I was hoping for.
Of course there is no way to know what will happen with my aches and pains or if they're HCV related, but I do know that I am going to do everything I can to get on Harvoni. I have been waiting a LONG time for a treatment that has a good chance of freeing me from the virus and maybe spare my liver (and who knows what other body parts) from further damage.
To echo what others said, it doesn't matter how anyone caught HCV. Nobody I know has lived a perfect life.
Thanks again to everyone. I am very happy to have found this place!
I look at it this way :)
SVR is like beating something you want to beat ..... Its a goal .... like finishing a race
all the sacrifices of staying healthy ,,not drinking,,, quitting cigaretes ...... are not made in vain.....
getting SVR is the goal......... do i feel any side affects from my Hep C that ive had since 2002 ??? no i dont.... maybe slower healing on cuts .....
but the mere fact i know that son of a bi..:) is in me .. makes me say your days are numberd dragon i will kick your ass and not relent untill i have smote your ruin upon the rock :)
then i shall drink a beer and laugh :) but yes no matter how long the battle and sacrifices ... or the waiting..... There is no surrender or compromise...
I do not like you hep c i am... i will not eat with green eggs or ham... i do not like you in a boat ... while im wearing my coat....
i dont like you hep C... Its a goal.... set a goal make a plan... execute plan.. get outcome .... and then you look back and admire the work that went into it... was it worth it ? of course it was i pland and executed it to the outcome i wanted to get ......
so I say good luck to us all :) in all our endeavours and that you may call upon me when ever you wish for my opinion or help with anything you want help with ...
brought to you by THE TEAM WORK NETWORK :)
Is SVR worth it? No debate, hands down I would do it again with S/O or Harvoni today. Would I take a therapy that included interferon if that was my only option? Now that I have cirrhosis, probably yes, although I would have to give considerable thought to 24 or 48 weeks with a significant chance of treatment failure. Since I had problems with Inf/Riba in the past, the Incivek/Victrelis triple therapies were not considered good options.
Do I feel better? Yes, although my symptoms with progressive liver disease were relatively subtle. In hindsight, I realize that I probably had physical effects from HCV and cirrhosis, but was in some degree of denial waiting for better treatment options.
Angel, no offense and it doesn't matter how you got here. Smoking for 30 years is one of my bad choices (I won't mention my equivalents to Isiscat's drummer), perhaps causing worse damage than HCV in the long run. Even though I've quit for three years, lung cancer and heart disease maybe as significant of a risk as HCC and liver failure as I grow older.
I can't take back the years of smoking or alcohol use and its consequences in my ignorance of HCV, but I can take steps to improve my health today. It was almost a year ago when I started with my hepatologist who put me on S/O, almost two years to the day that I quit cigarettes. Even if I keel over tomorrow, they are the best things I've ever done to improve my sense of wellness at this stage in life. Get on Harvoni Tess, and slay the dragon for good!
-- Edited by Gator Man on Wednesday 12th of November 2014 09:05:30 PM
Is it worth it? Absolutely! Was it a tough journey? Definitely! The things along the way were silent, but progressive and I knew it. I educated myself and learned that I could only delay doing something about it for so long. The odds were beginning to go against me and I wasn't feeling good, more and more often. As was mentioned, the odds seemed to be grouped into thirds and the way I was feeling, I didn't believe I was in the third that would walk through this without experiencing more problems, serious problems. I decided if I was going to try and beat this, I had better get serious and do something about it. I went through IFN tx twice, monotherapy in the 90's and just completed IFN/Riba/Victrelis treatment successfully one year ago in December. If I had known that Sovaldi was so close to release I may have waited, but HCV treatment (in general) has always been developing, with more and better protocols being promised. So I didn't know when something better was actually going to come along. I knew waiting for the day that something perfect did come along, may likely come with a cost of lower odds of success, as well as increased problems in the way of liver disease itself but increased hepatic manifestations. Waiting was no longer an option in my mind, so I decided the IFN journey again, but this time with the aid of additional drugs was worth the effort and physical toll I knew I'd have to experience. It wasn't entirely pleasant, but it was also entirely doable and I'm glad I did it. Just knowing I accomplished that goal makes me feel better and I'm thankful knowing that HCV or something it caused won't be responsible for early death or disease...
Tig
Hi Tess, welcome to the forum!
To answer your question I would say that most people feel a lot better after achieving SVR, whether in terms of energy levels and general health, or also as far as their emotional and psychological well being is concerned.
For many people clearing the virus leads to a new lease of life, especially if they have had the infection for a long time, and also it takes away many fears about possible progression of liver fibrosis, as well as issues such as who they can trust with their diagnosis, and the worry of whether they run the risk of passing the virus on to others.
For me personally, I had suffered from debilitating fatigue, as well as muscle and joint pain, for many years before I did my treatment, and achieving SVR literally gave me my life back. My energy levels have increased beyond my expectations and my aches and pains have improved significantly.
Wishing you the best of luck with getting your Harvoni treatment approved! Do keep us updated, we`ll look forward to hearing from you again! Jill
Anyway-yes! SVR is worth it no matter what, but not having to use Interferon to get there is a big plus.
I wouldn't make so much of it, if there were effective pain remedies available...
No problem, Angel. I've certainly made my share of bad choices (that drummer in '76 comes to mind) but I definitely didn't do anything to deserve this and neither did anyone else, IMO, including those who overdid the partying in their youth. Viruses are mostly just the result of bad luck.
My older brother also has HCV and he drinks alcohol much to my dismay. So far his liver is still in better shape than mine. Luck of the draw sometimes.
Apologies Isiscat...and anyone else offended. I am one of those stupid fools who basically gave this virus to himself...youth, yes wasted on the young! I just question things and I have to keep questioning until I am happy with the answer. But it's a gamble to think you might get through fine without treatment, though statistically you will probably die of a heart attack before HCV kills you! I just want to beat the living daylights out of the people that run these companies! But I suppose this is where capitalism takes you..."I'm alright Jack" and f@#k everyone else. Their deals with the third world have nothing whatsoever to do with humanity, they can't even conceive what that word means, but I guess it's obsolete these days and soon to be erased from history?
Angel: Dude, you are giving a bad rep to those of us who didn't have the honor of shooting drugs, drinking our livers into oblivion, and super-sizing our fries. Believe me when I tell you that the virus itself can cause cirrhosis; if or when that will happen depends on a multitude of factors that don't include lifestyle choices. Genetics, immune systems, and a whole host of bio-chemical factors play a role in HCV induced liver disease progression.
If 100 buddhist monks were infected with the HCV virus, ~ 1/3 would clear it spontaneously. Of the 2/3 who went on to develop chronic HCV ~ 2/3 would develop cirrhosis at some point (usually by age 65) and 1/3 would never get cirrhosis but would die peacefully chanting (or be trampled to death by some random pack of Tibetian mastiffs). I hear what you are saying but don't underestimate the damage the virus can do; it just depends on the host.
The question of is SVR worth it is pretty much guaranteed to yield an affirmative response because nobody would want their HCV back. The better questions (IMHO) are: 1) would you have waited for better tx, and 2) do you feel better with SVR. The answers will be wide and varied depending on people's individual experiences.
There was a UK study that asked patients whether they feel better post tx and as I recall ~half said no. Mind you, these results were a couple of years after Interferon/Riba tx that was usually a year or so in duration. Nobody knows yet what the long term effects of the new DAAs will be. We all have to weigh the potential benefits vs the potential risks (which are not entirely known).
-- Edited by Isiscat2011 on Wednesday 12th of November 2014 05:34:23 PM
I had it for over 35 years too and I tried triple tx 3 yrs ago, which failed. That was with interferon and riba and that was not fun. I was lucky enough to get on a trail with what became Harvoni ( Sobusfur ?, 7977 ) I think.
It was worth it. The new drugs were almost without sx for me but 2 years later I feel great. I am healthy and I don't have any lingering effects that I can pinpoint. I feel like it extended my life and raised my quality of life too.
We aren't getting any younger. I would rather fight it sooner than later. ( as long as I didn't have to take interferon I mean. )
Good luck!
Hi Tess, I can't see how this virus could be causing neck symptoms? I have had this virus for about 28 years, but was only diagnosed recently. I too am reluctant to take Interferon/Rib....even my consultant told me to hang on for a while ( my liver has some damage but nothing too alarming, of course this is subject to change) till better drugs come along. It's a hard choice to make...turning down treatment that is corrosive and perhaps more damaging than the illness. I do wonder if the whole medical profession, drug companies etc are hyping up Hep C? I don't say this lightly, but clearly there are riches beyond belief at stake here....billionaires are being made! I think that all of a sudden every ailment, illness, malady is because of Hepatitis, for instance, a life long heavy drinker may present with Cirrhosis and viral Hepatitis c...all of a sudden it's the Hep c that caused the Cirrhosis and nothing at all to do with alcohol. The same goes with the obese patient. How much of our liver damage is down to Hep c and how much of it is a lifestyle choice? If a person drank like a fish, ate like a hog and never exercised, in time you would expect this person to have liver disease, but chuck in HCV and everyone points to the virus as the cause...I feel this is encouraged by the drug companies and doctors. This idea won't go down well with many people as it's easier to blame a virus than ones own life choices. I am torn between believing what the doctors say and what I am starting to suspect. Personally I think my own Steatosis and liver fibrosis has been caused by excess alcohol consumption and a very poor diet. Liver disease is becoming endemic in western nations, particularly north America, and poor diet is responsible for most of it, not HCV. If we add this virus into the equation of poor nutrition, high alcohol intake, lack of exercise and even drug use, how can we ever know what has caused the liver degradation? From what people have said about treatments and ridding themselves of the virus, I think most are very happy to see the back of it. If you can get your hands on the modern drugs, then I would say it was worth taking them...but Interferon/Rib is something you will have to think long and hard about. I have had some people telling me I should just bite the bullet and take the damned stuff, while others have told DON'T TAKE IT! Personally I will hold on for some time, watch my health and hope that the grotesquely avaricious drug companies lower their bloated and extortionate prices of these "apparent" life saving drugs....fingers crossed!
-- Edited by Angel67 on Wednesday 12th of November 2014 12:33:19 PM
Hi,
I am a 60 year old woman and have had Hep C for 32 years, supposedly from a blood transfusion in '82. Was diagnosed in 2001 after checking for Lyme Disease due to chronic neck pain. No Lyme, but they found HCV. Since then I have been monitored with regular biopsies and blood work. Moderate fibrosis. No cirrhosis yet. Pain has continued and I can barely move my neck from side to side. I have also been depressed and have other joint pain, but don't know if it is related to HCV or age and injuries :) Non-gastro docs say it is arthritis.
I didn't want to try treatments that involved ribavirin or interferon and asked my gastro doc to let me know when other treatments are available. Today my doc called to say that I can go on Harvoni (assuming my insurance, Fed Blue, will cover it or if there is another way). My question is.... if the treatment is successful, what have those of you with SVR experienced? Do you feel better? Hoping for some good news!
Thanks
Tess