Aa
Seeking happy post treatment story!
Hi there!
I am 7 months through triple therapy with Incivek / telaprivir, and have struggled massively, to the point where I am seriously contemplating stopping treatment now (zero viral load from week 12, so expected to go 5 months more). Given the new orals on the horizon (if I relapse) and because all of the forums I peruse are FULL of painful post treatment stories, I wonder if I will stop. My doctors and nurse have repeatedly waved off my concerns about lasting side effects (saying that most patients have no problems at all, and I should stay off the Internet). But I am seriously worried, as I am yet to find one positive post treatment story where interferon and ribavarin are concerned!
I am certain that I will anyway take time to recover, after 7 months treatment, but Im also certain that the sx will be worse still after 5 months more. I would really love to hear from anyone out there who has had a positive experience generally with tx and post tx.....is there anyone out there who has actually bounced back good as gold (as my docs promise that I will, as I go for another blood transfusion!!)
To all of you out there still suffering from this dastardly poison, dig deep, we all have hidden strengths that can come to the fore when we really need. This is a wonderful support here.......thanks to all of you for sharing our stories....
LeelaLo x
I am 7 months through triple therapy with Incivek / telaprivir, and have struggled massively, to the point where I am seriously contemplating stopping treatment now (zero viral load from week 12, so expected to go 5 months more). Given the new orals on the horizon (if I relapse) and because all of the forums I peruse are FULL of painful post treatment stories, I wonder if I will stop. My doctors and nurse have repeatedly waved off my concerns about lasting side effects (saying that most patients have no problems at all, and I should stay off the Internet). But I am seriously worried, as I am yet to find one positive post treatment story where interferon and ribavarin are concerned!
I am certain that I will anyway take time to recover, after 7 months treatment, but Im also certain that the sx will be worse still after 5 months more. I would really love to hear from anyone out there who has had a positive experience generally with tx and post tx.....is there anyone out there who has actually bounced back good as gold (as my docs promise that I will, as I go for another blood transfusion!!)
To all of you out there still suffering from this dastardly poison, dig deep, we all have hidden strengths that can come to the fore when we really need. This is a wonderful support here.......thanks to all of you for sharing our stories....
LeelaLo x
Happy ending coming right up! I achieved SVR in March 2013, and as of the last few months I am now feeling GREAT! It was a long and difficult road, which I will describe below, but it felt worth it all from the moment I was told I was SVR , and now the icing on the cake is having finally gotten free of my last couple of sx which I had been attributing (perhaps incorrectly) to the triple tx itself.
I was infected with HCV from a transfusion in 1984, I treated unsuccessfully with interferon alone pretty early on and by 2004 I had full blown cirrhosis. Soon after that dx I treated with interferon and ribavirin for 15 months, but relapsed within 6 weeks of finishing tx. Both of those treatments were really hard on me but neither caused me any lasting side effects. In fall 2011 I started my third treatment, triple tx with Incivek. I had to do the full 48 weeks and it was really hellish just about the whole time. I also seriously considered stopping early. I was UND from week 8 and I seemed to keep getting sicker the whole way through, but everyone (people here, my family and my doctors ) all kept urging me to stick it out to the end. I did stick it out and finished in fall of 2012 and was declared SVR in March of 2013. I felt somewhat better within a few weeks of stopping the meds but it took an incredibly long time to fully recover. It was truly a full year before I seemed to have shaken off most of the ill effects, and even then I still suffered continuing GI issues and continuing fatigue (though nowhere near as bad as during tx). Just in the short time since Christmas I have finally gotten those remaining problems resolved. I had developed a case of IBS which is now being controlled with meds. It might have been something I would have developed anyway, but it seems that the tx really brought it on. Anyway, it's under control now. The remaining fatigue was really resistant to resolution and I was convinced it was a post-tx syndrome in spite of my hepatologist denying that, until my very smart internist interrogated me in great detail about my sleep. On learning that I awakened frequently from hip pain and had to change sides frequently during the night she investigated that issue. I was probably never even going to mention it on my own because it seemed so minor (easily relieved by changing position, and never hurting during normal daytime activities), but she thought it needed tx. I just had steroid injections in both sides, for trochanteric bursitis, and three days later my fatigue disappeared! That "minor" problem was interfering with my sleep pattern enough to be the cause of years of severe daytime fatigue! I know post-interferon syndrome is real, but I do wonder how many other people have problems they blame on post-interferon syndrome that really could be of another cause.
You really have to balance out the risks and benefits as best you can, and remember to give adequate weight to the risks of the virus itself. You probably know all about what it can do to your liver, but do you know about the longterm sx possible just from carrying the virus? I don't know all the possibilities but I do know that the virus is quite capable of triggering your immune system to start attacking itself. Lots of people worry about interferon causing autoimmune joint problems but fewer seem to know that the virus itself causes this too (and personally I think it does it more frequently than the interferon does). I developed autoimmune arthritis within two years of infection, which was at least 8 years before I first treated with interferon. The arthritis has been with me ever since and so far does not seem to have been relieved by eliminating the virus. I think harboring it for so many years allowed the autoimmune problem to take on a life of its own.
My personal take on the balance of pluses and minuses comes down very strongly on the side of finishing this tx. You have a very good chance of SVR if you complete it, but think of how awful it would be to have done all this hard work and suffering for nought and then to wonder whether it was only a failure because you didn't finish. If you finish you will probably have the joy of achieving SVR but you will at the least know you gave it your best shot.
I was infected with HCV from a transfusion in 1984, I treated unsuccessfully with interferon alone pretty early on and by 2004 I had full blown cirrhosis. Soon after that dx I treated with interferon and ribavirin for 15 months, but relapsed within 6 weeks of finishing tx. Both of those treatments were really hard on me but neither caused me any lasting side effects. In fall 2011 I started my third treatment, triple tx with Incivek. I had to do the full 48 weeks and it was really hellish just about the whole time. I also seriously considered stopping early. I was UND from week 8 and I seemed to keep getting sicker the whole way through, but everyone (people here, my family and my doctors ) all kept urging me to stick it out to the end. I did stick it out and finished in fall of 2012 and was declared SVR in March of 2013. I felt somewhat better within a few weeks of stopping the meds but it took an incredibly long time to fully recover. It was truly a full year before I seemed to have shaken off most of the ill effects, and even then I still suffered continuing GI issues and continuing fatigue (though nowhere near as bad as during tx). Just in the short time since Christmas I have finally gotten those remaining problems resolved. I had developed a case of IBS which is now being controlled with meds. It might have been something I would have developed anyway, but it seems that the tx really brought it on. Anyway, it's under control now. The remaining fatigue was really resistant to resolution and I was convinced it was a post-tx syndrome in spite of my hepatologist denying that, until my very smart internist interrogated me in great detail about my sleep. On learning that I awakened frequently from hip pain and had to change sides frequently during the night she investigated that issue. I was probably never even going to mention it on my own because it seemed so minor (easily relieved by changing position, and never hurting during normal daytime activities), but she thought it needed tx. I just had steroid injections in both sides, for trochanteric bursitis, and three days later my fatigue disappeared! That "minor" problem was interfering with my sleep pattern enough to be the cause of years of severe daytime fatigue! I know post-interferon syndrome is real, but I do wonder how many other people have problems they blame on post-interferon syndrome that really could be of another cause.
You really have to balance out the risks and benefits as best you can, and remember to give adequate weight to the risks of the virus itself. You probably know all about what it can do to your liver, but do you know about the longterm sx possible just from carrying the virus? I don't know all the possibilities but I do know that the virus is quite capable of triggering your immune system to start attacking itself. Lots of people worry about interferon causing autoimmune joint problems but fewer seem to know that the virus itself causes this too (and personally I think it does it more frequently than the interferon does). I developed autoimmune arthritis within two years of infection, which was at least 8 years before I first treated with interferon. The arthritis has been with me ever since and so far does not seem to have been relieved by eliminating the virus. I think harboring it for so many years allowed the autoimmune problem to take on a life of its own.
My personal take on the balance of pluses and minuses comes down very strongly on the side of finishing this tx. You have a very good chance of SVR if you complete it, but think of how awful it would be to have done all this hard work and suffering for nought and then to wonder whether it was only a failure because you didn't finish. If you finish you will probably have the joy of achieving SVR but you will at the least know you gave it your best shot.
The fact that you have made it through seven whole months on this treatment, tells me you are one strong person. Only you know what you can bare but I would just like to point out that you have done amazingly well to make it to this point. You are stronger than you think and you are undetected!
The finish line is not that far off.
Best of luck whatever you decide.
Nan
The finish line is not that far off.
Best of luck whatever you decide.
Nan
Hello there, congratulations getting to UND.
Like Frank said you have come so far to quit now. Please try to hang in there. There are new medications but you might want to check into them as I have the all orals just approved is only for people who have not treated and the other one will still contain interferon and ribavirin.
I am sure other more knowledgeable members will be along soon. I just wanted to say, please hang in there. You are so close to stop now.
I understand the feeling, there were times I wanted to quit so badly but I didn't and I am now cured. If I had to do it all over again I would.
Everyone is different so there is no way to know how long it will take you to feel better.
Take care, Dee
Like Frank said you have come so far to quit now. Please try to hang in there. There are new medications but you might want to check into them as I have the all orals just approved is only for people who have not treated and the other one will still contain interferon and ribavirin.
I am sure other more knowledgeable members will be along soon. I just wanted to say, please hang in there. You are so close to stop now.
I understand the feeling, there were times I wanted to quit so badly but I didn't and I am now cured. If I had to do it all over again I would.
Everyone is different so there is no way to know how long it will take you to feel better.
Take care, Dee
Sorry to hear that you are suffering so badly! Unfortunately I am not expecting to improve but rather get much worse year after year even though I "cured" a virus! about five years ago!
I may agree with what your doc/nurse have said "MOST patients have no problems at all..." but then again, if I am not wrong, old school double treatment had to include the possibility of death warning - obviously not a large number but a possibility was always there, a very very rare case.
Now everyone is at least aware of the Mayo Clinic coming out with Post-Interferon Syndrome which there are more than just a very rare number of patients who are suffering long term effects and if you ask the local doc out there they are the ones who see the PIS patients as the Liver Gurus don't want to believe we exist!
If I were you I would try to continue on as you have already gone thru so much and take the chance as it is pretty low. There are a ton of folk out there who get right back on their bicycle and never look back.
Good luck,f
I may agree with what your doc/nurse have said "MOST patients have no problems at all..." but then again, if I am not wrong, old school double treatment had to include the possibility of death warning - obviously not a large number but a possibility was always there, a very very rare case.
Now everyone is at least aware of the Mayo Clinic coming out with Post-Interferon Syndrome which there are more than just a very rare number of patients who are suffering long term effects and if you ask the local doc out there they are the ones who see the PIS patients as the Liver Gurus don't want to believe we exist!
If I were you I would try to continue on as you have already gone thru so much and take the chance as it is pretty low. There are a ton of folk out there who get right back on their bicycle and never look back.
Good luck,f
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