Hi all, boy I'm I disappointed with TX. today i went to the doctor and he informed me, i have to stop TX. My VL went up to 86,000 from less than a thousand 12 weeks ago. I made a post about how i wanted to drink again after 25 years of being in 12 step program a couple of days ago but just for today i think i can handle it and not take a drink again. I must admit that now I'm really at a lost. I had such high hope with this TX and that why i feel at a lost. I failed interferon, failed peg & riba and now i failed Incevik & riba and peg . where do i go now, are there any trials that work with non responders like me. I need all the input i can get.
any and all input or advise would be very very helpful.
Hi Edmed,
Sorry to hear about the failed therapy. Unfortunately, the same thing happened to me. I never went to UND and by week 8 it was creeping back up. Just FYI, i am going to see my doctor in Dec. to discuss treatment with sofosbuvir and interferon. My nurse said she didn't think I would be taking riba with this treatment. I will have more answers in Dec obviously. I have to get more information about the statistics and if it is a good idea for me to wait until the other drug ledipasvir is approved. I really don't have any answers at all, but just to let you know there are options that will be available soon. Good luck!!
ios9 said
Aug 21, 2013
Sorry Edmed, I understand how difficult it must have been to be told this treatment does not work for you. But with such a "good" lever, I would reither wait for Sofo and else. Have a Fibroscan done first if you may, then if it is near as good as it was in 2008, better to wait for the new drugs to be on the market, that way you and your doc can choose what you want and how long you want it.
Keep water near you, and all the best,
Warm regards
Do
JoAnneh said
Aug 21, 2013
Sorry to hear you got bad news!:(
Thankful it looks like you still have time
On your side for newer drugs coming.
hepcat60 said
Aug 21, 2013
I am not giving out medical advice, but I agree. If my numbers looked like that, I would probably be waiting for that treatment. I am 30 weeks in and could not wait for the opportunity to take something less invasive at the time. Good luck with this decision.
mallani said
Aug 21, 2013
Hi Ed,
If you were A2 F0 in 2008, it's unlikely that you have progressed much further at your age. Can you find out whether Fibroscan is available in your area? It's now approved in the USA, and there should be a lot of new Clinics where this can be done. If it was me, I'd try to get a Fibroscan just for reassurance, and make sure my bilirubin, platelets, albumin and INR (or Prothrombin Time) were normal. Then I'd sit and wait for the FDA approvals to come through. I would want Sofosbuvir and Ledipasvir (single tablet) or Sofosbuvir and BMS's Daclatasvir. It make take 2 years, but you can afford to wait that long. Just don't drink, lose some weight ( to help the steatosis) and eat a healthy diet in the meantime. You'll be fine. Cheers.
Tig said
Aug 21, 2013
Hang in there Ed! There is a PM on the way, keep your eyes open! We're going beat this thing one way or another!
edmed said
Aug 20, 2013
mallani wrote:
How is your liver? I don't recall seeing a biopsy or Fibroscan result. That may help decide whether you need to get on a Trial, or chill out and wait for Sofosbuvir and a NS5A blocker.
first of all I want to say thank you all so so much for being there to help when help is needed.
Yes i had a boipsy in 2008 and it showed mild chronic hep without fribrosis, grade 2, stage 0, mild steatosis {1+ out of 4} I think those are good numbers? I really dont understand all this stuff but the doctor said i was doing great at that time. when i started TX this time the doctor didn't want to put me thru another procedure, so those are latest numbers i have. I did have a ultrasound of the liver in 2011 and that showed enlarged liver 16.0 cm with fatty infiltration.
I'm not sure what going to happen but I will do the foot work and hopefully some great will happen.
do you know of any trail in south florida I can look into???
Biggyb said
Aug 20, 2013
Sorry Ed, gets frustrating i know. My GI also told me if this time didn't work some new crap should be out very soon. Just relax and continue a sober life. You and me and all of us will beat this someday. Cheers~Bob
GodsGrl said
Aug 20, 2013
So sorry to hear that Ed. You will be in my prayers! Keep you head up new treatments are very near!
Kellie said
Aug 20, 2013
Hi Ed, my heart goes out to you today. I'm sorry your body didn't take to the medicine. My NP mentioned to me when I started treatment, if it didn't work for me there would be something available by the end of next year. Don't give up hope. A cure is right around the corner. big hug for you K
mallani said
Aug 20, 2013
Hi Ed,
Sorry the triple Rx didn't work for you. I can understand your frustration. You're obviously not Interferon sensitive, so taking more of that poison is out of the question. You can't take another antiprotease so the Gilead combo will be the one for you. It may take a couple of years, but you'll get there. How is your liver? I don't recall seeing a biopsy or Fibroscan result. That may help decide whether you need to get on a Trial, or chill out and wait for Sofosbuvir and a NS5A blocker. Don't pick up that first drink-PLEASE!
nurschic said
Aug 20, 2013
Hey Edmed..... Sorry to hear about treatment not working out for you. On Sept 11th I will go to the Dr to see if I stay on treatmetn or stop. I am also on Incivek and my 4 week VL was well over 1000 but my Dr kept me on the treatment.
I will be speaking with my Dr about trials at my next appointment. If I hear anything good I will let you know!
Hang in there and keep your head held high.....and drinking is not going to help anything, it just makes things worse.
Tig said
Aug 20, 2013
I wondered after you mentioned your concern over the weekend. It's uncanny how you just know when something is up. I'm sorry Brother, really sorry that it didn't work this time. I know your chance to succeed in the near future gets better every month and you will. Just hold on to the same hope you started your most recent treatment with and you'll be rewarded eventually. There isn't much anyone can say right now except that your help here during this course of treatment has made a difference to all of us. I hope you'll count on us to help you over this rough spot like you have been there for us. Stay strong and keep up that positive attitude! It will see you through anything this disease can throw at you, that's a promise...
edmed said
Aug 20, 2013
Hi all, boy I'm I disappointed with TX. today i went to the doctor and he informed me, i have to stop TX. My VL went up to 86,000 from less than a thousand 12 weeks ago. I made a post about how i wanted to drink again after 25 years of being in 12 step program a couple of days ago but just for today i think i can handle it and not take a drink again. I must admit that now I'm really at a lost. I had such high hope with this TX and that why i feel at a lost. I failed interferon, failed peg & riba and now i failed Incevik & riba and peg . where do i go now, are there any trials that work with non responders like me. I need all the input i can get.
any and all input or advise would be very very helpful.
Hi Edmed,
Sorry to hear about the failed therapy. Unfortunately, the same thing happened to me. I never went to UND and by week 8 it was creeping back up. Just FYI, i am going to see my doctor in Dec. to discuss treatment with sofosbuvir and interferon. My nurse said she didn't think I would be taking riba with this treatment. I will have more answers in Dec obviously. I have to get more information about the statistics and if it is a good idea for me to wait until the other drug ledipasvir is approved. I really don't have any answers at all, but just to let you know there are options that will be available soon. Good luck!!
Sorry Edmed, I understand how difficult it must have been to be told this treatment does not work for you. But with such a "good" lever, I would reither wait for Sofo and else. Have a Fibroscan done first if you may, then if it is near as good as it was in 2008, better to wait for the new drugs to be on the market, that way you and your doc can choose what you want and how long you want it.
Keep water near you, and all the best,
Warm regards
Do
Thankful it looks like you still have time
On your side for newer drugs coming.
I am not giving out medical advice, but I agree. If my numbers looked like that, I would probably be waiting for that treatment. I am 30 weeks in and could not wait for the opportunity to take something less invasive at the time. Good luck with this decision.
Hi Ed,
If you were A2 F0 in 2008, it's unlikely that you have progressed much further at your age. Can you find out whether Fibroscan is available in your area? It's now approved in the USA, and there should be a lot of new Clinics where this can be done. If it was me, I'd try to get a Fibroscan just for reassurance, and make sure my bilirubin, platelets, albumin and INR (or Prothrombin Time) were normal. Then I'd sit and wait for the FDA approvals to come through. I would want Sofosbuvir and Ledipasvir (single tablet) or Sofosbuvir and BMS's Daclatasvir. It make take 2 years, but you can afford to wait that long. Just don't drink, lose some weight ( to help the steatosis) and eat a healthy diet in the meantime. You'll be fine. Cheers.
Hang in there Ed! There is a PM on the way, keep your eyes open! We're going beat this thing one way or another!
first of all I want to say thank you all so so much for being there to help when help is needed.
Yes i had a boipsy in 2008 and it showed mild chronic hep without fribrosis, grade 2, stage 0, mild steatosis {1+ out of 4} I think those are good numbers? I really dont understand all this stuff but the doctor said i was doing great at that time. when i started TX this time the doctor didn't want to put me thru another procedure, so those are latest numbers i have. I did have a ultrasound of the liver in 2011 and that showed enlarged liver 16.0 cm with fatty infiltration.
I'm not sure what going to happen but I will do the foot work and hopefully some great will happen.
do you know of any trail in south florida I can look into???
Sorry Ed, gets frustrating i know. My GI also told me if this time didn't work some new crap should be out very soon. Just relax and continue a sober life. You and me and all of us will beat this someday. Cheers~Bob
Hi Ed, my heart goes out to you today. I'm sorry your body didn't take to the medicine. My NP mentioned to me when I started treatment, if it didn't work for me there would be something available by the end of next year. Don't give up hope. A cure is right around the corner. big hug for you
K
Hi Ed,
Sorry the triple Rx didn't work for you. I can understand your frustration. You're obviously not Interferon sensitive, so taking more of that poison is out of the question. You can't take another antiprotease so the Gilead combo will be the one for you. It may take a couple of years, but you'll get there. How is your liver? I don't recall seeing a biopsy or Fibroscan result. That may help decide whether you need to get on a Trial, or chill out and wait for Sofosbuvir and a NS5A blocker. Don't pick up that first drink-PLEASE!
Hey Edmed..... Sorry to hear about treatment not working out for you. On Sept 11th I will go to the Dr to see if I stay on treatmetn or stop. I am also on Incivek and my 4 week VL was well over 1000 but my Dr kept me on the treatment.
I will be speaking with my Dr about trials at my next appointment. If I hear anything good I will let you know!
Hang in there and keep your head held high.....and drinking is not going to help anything, it just makes things worse.
I wondered after you mentioned your concern over the weekend. It's uncanny how you just know when something is up. I'm sorry Brother, really sorry that it didn't work this time. I know your chance to succeed in the near future gets better every month and you will. Just hold on to the same hope you started your most recent treatment with and you'll be rewarded eventually. There isn't much anyone can say right now except that your help here during this course of treatment has made a difference to all of us. I hope you'll count on us to help you over this rough spot like you have been there for us. Stay strong and keep up that positive attitude! It will see you through anything this disease can throw at you, that's a promise...
Hi all, boy I'm I disappointed with TX. today i went to the doctor and he informed me, i have to stop TX. My VL went up to 86,000 from less than a thousand 12 weeks ago. I made a post about how i wanted to drink again after 25 years of being in 12 step program a couple of days ago but just for today i think i can handle it and not take a drink again. I must admit that now I'm really at a lost. I had such high hope with this TX and that why i feel at a lost. I failed interferon, failed peg & riba and now i failed Incevik & riba and peg . where do i go now, are there any trials that work with non responders like me. I need all the input i can get.
any and all input or advise would be very very helpful.