Post Hep c Treatment...If i had to do it all over again...
Gracie said
Aug 5, 2015
The incevik left me with hip and elbow pain. It did go away after a few months. The harvoni is making my hands hurt (achy feeling), but it's not constant, and hope it's not permanent. Still glad I'm doing this treatment, as hcc would be way worse and anything I can do to prevent that from happening is worth the risk.
gsx1250fa said
Aug 5, 2015
Thanks Cinnamon Girl :) I didn't know that was the new name of the drug combo. I'm not so sure my side effects aren't from this last tx with the combo. Every time i came off the interferon I did return to normal...libido, zest etc. it was this last go round that zapped me for some reason...and there was no interferon involved.
Cinnamon Girl said
Aug 5, 2015
Yes Michael, you were on the trial arm that included riba, along with sofosbuvir and GS-5885 (Ledipasvir)... the drug combo now known as Harvoni.
Hi fourlocos. The 2 drugs i was on was gileads sofosbuvir and GS5885 and I believe i was also taking ribivarin with this. it was a gilead trial at the time here in San Antonio. Although the drugs have far fewer initial side effects compared to lets say old school interferon...Nobody knows the long term affects of any of the new drugs out on the market. Drugs are brand new and trials are very quick. If they work they are fast tracked through the FDA. There is big competition between big pharma. Keep fighting the good fight :)
-- Edited by gsx1250fa on Wednesday 5th of August 2015 10:40:17 PM
gsx1250fa said
Aug 5, 2015
Hi Scruffy. Thanks for the response. hey at 63 you you are entitled to forget a few things :) I'm hoping the effects don't last a lifetime and refuse to go on meds. Physically I am n the best shape I have been in my life. Waiting for the mind to catch up.
fourlocos said
Aug 5, 2015
What was the final treatment that did cure you? Only because the "newer drugs" have left me without zest as well. I am not the person I was for sure. I muddle through work and my life now.
Scruffy said
Aug 5, 2015
Hi Mike
I went through two tx both with interferon. The last one with incivek worked, it wasn't easy. My first attempt was on a trail when the inter/riba was in its trial. I can relate to what your saying. I have a bike in storage because I take care of my Mom and have no place to keep it out of the elements. I put a charger on it every week and take it for a ride every other week. I used to ride it every day. My memory isn't what it used to be. I'm also in good shape. I think things are taking a back seat do to my age (63 this year) more than the lasting effects of treatment.
Best wishes
gsx1250fa said
Aug 5, 2015
Hi Cinnamon Girl. Yes it has been a while :) Funny thing is that I didn't have any of these symptoms until the end of my last tx. When on interferon I still use to ride my motorcycles all day and have a zest for life. I'm working on the situation as best I can. My diet is clean and I am physically in as good a shape as I was in my 20's. Thanks for the reply and we shall see what the future holds. :)
Cinnamon Girl said
Aug 5, 2015
Hello again Michael,
I remember you well, and I`m so sorry to hear about how bad you`re still feeling post treatment.
I can understand that you wish you'd waited longer, but although you`re struggling with health issues you didn`t have before tx, at least you did finally rid yourself of the Hep C virus which could well have progressed further by now and led to other more serious problems. That in itself is a huge achievement and must have taken a lot of determination and strength of will.
I realise that`s probably not much consolation to you right now and I do hope that things improve for you in time. Maybe cutting down your work commitment or making any other changes in your lifestyle will make it easier for you to cope day to day.
Best of luck with finding a treatment for your low T levels, maybe someone else will be able to chime in here too.
Sending all good wishes your way... Jill
gsx1250fa said
Aug 4, 2015
I would have waited for the new drugs that cured me. Hi Folks. haven't posted on here since i got cured of Hep C 2-3 years ago. I had 4 years of 4 Tx atttempts with the 4th curing me with the newer experimental drugs. The first 3 years included interferon and ribavirin. I had a zest for life and a great libido before treatment/attempts...and even for the first 3 of the 4 years (although sick from tx). I was so happy to get cured...but soon after I found myself in a black hole. No libido, memory problems...and my mojo was gone. Things i had a passion for I know longer cared about. I was very driven at work and loved it...and now found myself forcing myself to work. I went to a trt clinic and apparently had low T now...which I never had. I've been struggling with the trt trying to find the right application for the last year. Anybody out there feeling the same or have any suggestions. I feel like I'm in a bubble sometimes detached from reality and my memory is shot. My quality of life ***** compared to before treatment. I can honestly say I regret treatment...even though it cured me. Sorry for the wordy post. thks folks
The incevik left me with hip and elbow pain. It did go away after a few months. The harvoni is making my hands hurt (achy feeling), but it's not constant, and hope it's not permanent. Still glad I'm doing this treatment, as hcc would be way worse and anything I can do to prevent that from happening is worth the risk.
Thanks Cinnamon Girl :) I didn't know that was the new name of the drug combo. I'm not so sure my side effects aren't from this last tx with the combo. Every time i came off the interferon I did return to normal...libido, zest etc. it was this last go round that zapped me for some reason...and there was no interferon involved.
Yes Michael, you were on the trial arm that included riba, along with sofosbuvir and GS-5885 (Ledipasvir)... the drug combo now known as Harvoni.
I`ve just checked back on your old thread...
http://hepcfriends.activeboard.com/t52112013/new-studytreatment-no-shots/
Hi FL, please excuse me chiming in here...
Hi fourlocos. The 2 drugs i was on was gileads sofosbuvir and GS5885 and I believe i was also taking ribivarin with this. it was a gilead trial at the time here in San Antonio. Although the drugs have far fewer initial side effects compared to lets say old school interferon...Nobody knows the long term affects of any of the new drugs out on the market. Drugs are brand new and trials are very quick. If they work they are fast tracked through the FDA. There is big competition between big pharma. Keep fighting the good fight :)
-- Edited by gsx1250fa on Wednesday 5th of August 2015 10:40:17 PM
Hi Scruffy. Thanks for the response. hey at 63 you you are entitled to forget a few things :) I'm hoping the effects don't last a lifetime and refuse to go on meds. Physically I am n the best shape I have been in my life. Waiting for the mind to catch up.
What was the final treatment that did cure you? Only because the "newer drugs" have left me without zest as well. I am not the person I was for sure. I muddle through work and my life now.
Hi Mike
I went through two tx both with interferon. The last one with incivek worked, it wasn't easy. My first attempt was on a trail when the inter/riba was in its trial. I can relate to what your saying. I have a bike in storage because I take care of my Mom and have no place to keep it out of the elements. I put a charger on it every week and take it for a ride every other week. I used to ride it every day. My memory isn't what it used to be. I'm also in good shape. I think things are taking a back seat do to my age (63 this year) more than the lasting effects of treatment.
Best wishes
Hi Cinnamon Girl. Yes it has been a while :) Funny thing is that I didn't have any of these symptoms until the end of my last tx. When on interferon I still use to ride my motorcycles all day and have a zest for life. I'm working on the situation as best I can. My diet is clean and I am physically in as good a shape as I was in my 20's. Thanks for the reply and we shall see what the future holds. :)
Hello again Michael,
I remember you well, and I`m so sorry to hear about how bad you`re still feeling post treatment.
I can understand that you wish you'd waited longer, but although you`re struggling with health issues you didn`t have before tx, at least you did finally rid yourself of the Hep C virus which could well have progressed further by now and led to other more serious problems. That in itself is a huge achievement and must have taken a lot of determination and strength of will.
I realise that`s probably not much consolation to you right now and I do hope that things improve for you in time. Maybe cutting down your work commitment or making any other changes in your lifestyle will make it easier for you to cope day to day.
Best of luck with finding a treatment for your low T levels, maybe someone else will be able to chime in here too.
Sending all good wishes your way... Jill
I would have waited for the new drugs that cured me. Hi Folks. haven't posted on here since i got cured of Hep C 2-3 years ago. I had 4 years of 4 Tx atttempts with the 4th curing me with the newer experimental drugs. The first 3 years included interferon and ribavirin. I had a zest for life and a great libido before treatment/attempts...and even for the first 3 of the 4 years (although sick from tx). I was so happy to get cured...but soon after I found myself in a black hole. No libido, memory problems...and my mojo was gone. Things i had a passion for I know longer cared about. I was very driven at work and loved it...and now found myself forcing myself to work. I went to a trt clinic and apparently had low T now...which I never had. I've been struggling with the trt trying to find the right application for the last year. Anybody out there feeling the same or have any suggestions. I feel like I'm in a bubble sometimes detached from reality and my memory is shot. My quality of life ***** compared to before treatment. I can honestly say I regret treatment...even though it cured me. Sorry for the wordy post. thks folks