Fight the Good Fight - Sofosbuvir Working for Me, now for SVR.
sandyw said
Jan 10, 2015
I am taking Sofosbuvir and Daclatasvir. Started since 2 weeks and viral load has gone from 2 million to 285 thousand. No side effects besides what I already had which was the full body itching.
Quite amazing. Hope yours work well.
Tig said
Nov 24, 2014
Hi Scot,
Your location is just fine and this post would be suitable for either. I'm glad you got on this trial, it's a good one and I believe you'll do very well on it. I've seen statements regarding the use of Riba as unnecessary, and some that show a felt benefit. Whatever your position on it is, if you can tolerate it, no harm done and it will provide one more arrow in your quiver.
Good luck and keep us involved in your progress. This time SVR is yours!!!!
Tig
scotu said
Nov 24, 2014
Perhaps this post should be in the Harvoni Treatment Train... I'll leave that to one of the moderators.
Thanks to all for your support! So here we go again.
My Harvoni Trial (Gilead: 90 mg of ledipasvir and 400 mg of sofosbuvir) Train has left the station. And it still includes Ribavirin.
End of Week 1 virus down from 790,000 (at week 24 post Sovaldi+Riba) to 67, not quit undetected.
At week 4 undetectable.
This is another Gilead (24 week) trial through the University of Pennsylvania for Geno 1A'ers, relapser's, and all those other things.
My thoughts, prayers and support go out to all.
Side effects are negligible or maybe I'm just used to it; insomnia, low energy, etc.
But this time IT'S GONNA WORK! SVR here I come.
Dzdayscomin said
Sep 18, 2014
Hey Scott , sorry to hear of your set back that really bites, but hang in there and be strong for the next go round, we are a ll here thinking about you and praying for your successful tx to come.
Blessings to you good man stay strong and you will overcome!
Duane
Groupergetter said
Sep 18, 2014
Truly sorry to hear this Scot. It's good you can stay positive about it. With the new meds there are such high hopes and expectations that we often lose sight of the down side. I will go into any future tx with a much more guardedly optimistic, and realistic view. Next time will be 4 for me. Give the little one a hug, it will make you both feel better. Be well sir.
-- Edited by Groupergetter on Friday 19th of September 2014 12:52:13 AM
-- Edited by Groupergetter on Friday 19th of September 2014 01:03:33 AM
mallani said
Sep 18, 2014
Hi Scot,
That's really disappointing!! Obviously Riba isn't the drug to control Sovaldi variants in your case.
You've been through the mill, and you must get it right next time. I'd talk to the docs, and see what they think about the AbbVie trio. Your liver has had a good holiday so you've got time to carefully consider the next (final) step. Tough luck mate!
Isiscat2011 said
Sep 18, 2014
Hi Scot:
So sorry to read of your relapse at 24 weeks. Rather an odd protocol you were on for a gt 1. Adding Ledipasvir could work but I'd still be a bit concerned about Sovaldi RAVs which are, in all likelihood, the reason for the relapse. How about going with the ABBvie combo in December? Any thoughts on that?
Just hate to see you go through this yet another time--and for 6 months--you need to SVR for good next time!
Tig said
Sep 18, 2014
Hey Scot,
Damn!! is right I'm so sorry to hear your news. I'm stunned frankly! If 48 weeks of Sovaldi and Riba weren't enough to kill your beast, then it must be one mean and nasty variant. What's your plan? Are you going to jump back on it right away or spend some additional time recovering? I would almost lean toward going right back after it. Let us know when you have a chance. Do your best to keep your spirits up. I hope you keep us in the loop. We're here to help if we can Scot, just let us know. The newest "kids" on the block seem to really offer some good hope for the future. I hope they will finally offer you the results you've long deserved. Good luck buddy!
Tig
TomF said
Sep 18, 2014
I am sorry to hear your disappointing news. That really hurts -- just when you thought you were safely through. "Damn" does not even begin to cover it. You are a far better man than I!
This is also a painful reality check for the rest of us who are currently being treated. The new medicines are amazing, but they are not perfect. That is difficult to think about, and even more difficult to write about, but it is something we all need to accept.
Fortunately the medicines keep improving. Sofosbuvir/Ledipasvir will be even more amazing. I hope it is the one for you!
scotu said
Sep 18, 2014
Unfortunately, my 12 Week Post Sofosbuvir/Ribavirin jubilation was dampened @ Week 24.
The beast is back.
Damn (please excuse my language)... from Day 3 through 48 Weeks of Meds and 1,4 and 12 Weeks Post it was undetected.
Even Mr. Doctor and staff were shocked, they said (mostly teasingly) that I had messed up a research paper they were set to publish.
Sorry 'bout that!
Anyway if all goes well I'll start another 24 Week regiment of Sofosbuvir, Ledipasvir and of course good old Ribavirin.
Matt Chris said
May 19, 2014
Hey Scot
Its such happy news to hear that you have made to 12 weeks EOT UND, You have been a super trooper in the HCV treatments with a never give up attitude which we all need to have.
Thanks for keeping us informed
matt
Cinnamon Girl said
May 18, 2014
Hi again Scot, how wonderful to hear this news...many congratulations!!
You`ve waited a long time and fought a tough battle and how fantastic that you`ve got there in the end!
Hope your recovery is going well...how are you feeling now? Apart from being overjoyed, that is!!
Onward to SVR!!
mallani said
May 17, 2014
Hi Scot,
You've made it at last! Congrats, buddy.
Good to see that drop in portal venous pressure. It will continue to drop, and your liver will start to improve. All the best, and thanks for sharing. Cheers.
Tig said
May 17, 2014
Congratulations Scot!!!! Such good vibes are flowing on the forum this weekend! You've fought a long and repetitive battle but finally a successful blow against the beast. I know you're enjoying an almost unbelievable bit of news, but true it is and it's your time to celebrate my friend. I can't be happier for you! .5% relapse??? I like them kinda odds! Good luck....
Tig
scotu said
May 17, 2014
Some of the Best News I've had in a long time!
After many trials (since 1999, Interferon in various formulations and enough Ribavirin to fill a room), and prescription drugs (Incivek was the worst)...,
then 48 Weeks of Sofosbuvir (7977) and Ribavirin (undetected at day 3 on)
12 Week Post Treatment: HCV RNA PCR TAQMAN 2.0 -- HCV RNA not detected.
According to trial coordinator, if undetected @ week 12 post, there is less than .5% chance of a reoccurrence. Next check is 3 months.
Looks like some of this poison we take to fight the dragon may actually work!
To those on treatment, hang tough!
scotu said
Feb 25, 2014
Pressure test went well. Pressure was reduced from 19 (at the start of the trial) to 14 (last week) which is good (I'm told) showing I have mild portal hypertension. Cirrhosis and portal hypertension were requirements of the Gilead GS7977 study. Had post treatment blood work last Monday (same day as pressure test). 2 week post treatment blood work this Friday.
Loopy Lisa said
Feb 9, 2014
Thank you for letting me know, at least I wont have to worry about being a bag of bones on my TX when I start. Keeping my fingers crossed for you! :D
lauralou57 said
Feb 9, 2014
Congragulations on being undetected!
scotu said
Feb 9, 2014
Thank you all,
Lisa,
I actually wish there was some weight loss, but I gained a little. I'm over weight to being with, and my body is probably getting used to this "stuff."
Malcolm,
Cirrhotics and portal hypertension (I've had a couple esophageal varices banding procedures)were requirements of this trial. Transjugular hepatic venous pressure test was also a requirement at the beginning and the end.
Scot
Loopy Lisa said
Feb 8, 2014
Hi Scott,
Congratulations on being undetedected! I was wondering if you had experienced any weight loss on this combination? The old treatment we heard a lot about weight loss and this combination....
Thanks...
Cinnamon Girl said
Feb 8, 2014
Hi Scott, nice to hear from you again! I really admire your determination having been through so many different treatments, and I`m so pleased this trial has gone so well for you...Und from day 3 is fantastic!!
Thanks for sharing your experiences with the side effects, this is very useful for us to hear about. Even with 48 weeks of fatigue, insomnia etc, this must have been a breeze for you compared with previous treatments, and especially with incivek!
Wishing you all the best for SVR, I`d say you have good reason to be optimistic this time around!
Keep us posted!
mallani said
Feb 8, 2014
Hi Scot,
Good to hear from you! Wow, that's a lot of Sovaldi- it sounds easier than the Incivek triple.
I'm interested in the transjugular hepatic venous pressure test. Is that only for cirrhotics? It's a hell of a way to test for portal hypertension but certainly accurate.
Onwards to SVR. Cheers.
Matt Chris said
Feb 7, 2014
Hey Scot
That is great news for all to hear, wow 48 weeks of Sofosbuvir have not heard of that trial.
Hope all goes well with your other issues and please stay in touch, SVR is on its way.
matt
scotu said
Feb 7, 2014
Haven't posted in a while... was kinda of scolded by trial coordinator for posting/sharing too much.
Coming to the end of 48 weeks of Sofosbuvir (400mg x 1 a day) and Ribavirin (200mg 3 x am, 3 x pm). 9 days left.
Undetectable from day 3 on. This stuff works for me. Sad to hear it now costs a grand a pill.
Side effects: some loss of energy/drive, insomnia, some general aches and pains, but no worse than the many other treatments.
Next visit is Trans-jugular Hepatic Venous Pressure test. Had one going in and one coming out.
Next milestone is post treatment SVR. All fingers crossed.
My thoughts and prayers continue to go out to the entire HCV Community!
If your on treatment, hang in!!! Fight the good fight.
Thanks to those who have been through the various clinical trials (as i have) to test these concoctions.
I've lost track of how many times I've taken Ribavirin, Interferon (of one form or the other), and Oh! the pain from Teleprevir/Incivek but it would have been worth it if there was SVR.
-- Edited by scotu on Friday 7th of February 2014 04:29:55 PM
I am taking Sofosbuvir and Daclatasvir. Started since 2 weeks and viral load has gone from 2 million to 285 thousand. No side effects besides what I already had which was the full body itching.
Quite amazing. Hope yours work well.
Hi Scot,
Your location is just fine and this post would be suitable for either. I'm glad you got on this trial, it's a good one and I believe you'll do very well on it. I've seen statements regarding the use of Riba as unnecessary, and some that show a felt benefit. Whatever your position on it is, if you can tolerate it, no harm done and it will provide one more arrow in your quiver.
Good luck and keep us involved in your progress. This time SVR is yours!!!!
Tig
Perhaps this post should be in the Harvoni Treatment Train... I'll leave that to one of the moderators.
Thanks to all for your support! So here we go again.
My Harvoni Trial (Gilead: 90 mg of ledipasvir and 400 mg of sofosbuvir) Train has left the station. And it still includes Ribavirin.
End of Week 1 virus down from 790,000 (at week 24 post Sovaldi+Riba) to 67, not quit undetected.
At week 4 undetectable.
This is another Gilead (24 week) trial through the University of Pennsylvania for Geno 1A'ers, relapser's, and all those other things.
My thoughts, prayers and support go out to all.
Side effects are negligible or maybe I'm just used to it; insomnia, low energy, etc.
But this time IT'S GONNA WORK! SVR here I come.
Hey Scott , sorry to hear of your set back that really bites, but hang in there and be strong for the next go round, we are a ll here thinking about you and praying for your successful tx to come.
Blessings to you good man stay strong and you will overcome!
Duane
Truly sorry to hear this Scot. It's good you can stay positive about it. With the new meds there are such high hopes and expectations that we often lose sight of the down side. I will go into any future tx with a much more guardedly optimistic, and realistic view. Next time will be 4 for me. Give the little one a hug, it will make you both feel better. Be well sir.
-- Edited by Groupergetter on Friday 19th of September 2014 12:52:13 AM
-- Edited by Groupergetter on Friday 19th of September 2014 01:03:33 AM
Hi Scot,
That's really disappointing!! Obviously Riba isn't the drug to control Sovaldi variants in your case.
You've been through the mill, and you must get it right next time. I'd talk to the docs, and see what they think about the AbbVie trio. Your liver has had a good holiday so you've got time to carefully consider the next (final) step. Tough luck mate!
Hi Scot:
So sorry to read of your relapse at 24 weeks. Rather an odd protocol you were on for a gt 1. Adding Ledipasvir could work but I'd still be a bit concerned about Sovaldi RAVs which are, in all likelihood, the reason for the relapse. How about going with the ABBvie combo in December? Any thoughts on that?
Just hate to see you go through this yet another time--and for 6 months--you need to SVR for good next time!
Hey Scot,
Damn!! is right
I'm so sorry to hear your news. I'm stunned frankly! If 48 weeks of Sovaldi and Riba weren't enough to kill your beast, then it must be one mean and nasty variant. What's your plan? Are you going to jump back on it right away or spend some additional time recovering? I would almost lean toward going right back after it. Let us know when you have a chance. Do your best to keep your spirits up. I hope you keep us in the loop. We're here to help if we can Scot, just let us know. The newest "kids" on the block seem to really offer some good hope for the future. I hope they will finally offer you the results you've long deserved. Good luck buddy!
Tig
I am sorry to hear your disappointing news.
That really hurts -- just when you thought you were safely through. "Damn" does not even begin to cover it. You are a far better man than I!
This is also a painful reality check for the rest of us who are currently being treated. The new medicines are amazing, but they are not perfect. That is difficult to think about, and even more difficult to write about, but it is something we all need to accept.
Fortunately the medicines keep improving. Sofosbuvir/Ledipasvir will be even more amazing. I hope it is the one for you!
Unfortunately, my 12 Week Post Sofosbuvir/Ribavirin jubilation was dampened @ Week 24.
The beast is back.
Damn (please excuse my language)... from Day 3 through 48 Weeks of Meds and 1,4 and 12 Weeks Post it was undetected.
Even Mr. Doctor and staff were shocked, they said (mostly teasingly) that I had messed up a research paper they were set to publish.
Sorry 'bout that!
Anyway if all goes well I'll start another 24 Week regiment of Sofosbuvir, Ledipasvir and of course good old Ribavirin.
Hey Scot
Its such happy news to hear that you have made to 12 weeks EOT UND, You have been a super trooper in the HCV treatments with a never give up attitude which we all need to have.
Thanks for keeping us informed
matt
Hi again Scot, how wonderful to hear this news...many congratulations!!
You`ve waited a long time and fought a tough battle and how fantastic that you`ve got there in the end!
Hope your recovery is going well...how are you feeling now? Apart from being overjoyed, that is!!
Onward to SVR!!
Hi Scot,
You've made it at last! Congrats, buddy.
Good to see that drop in portal venous pressure. It will continue to drop, and your liver will start to improve. All the best, and thanks for sharing. Cheers.
Congratulations Scot!!!! Such good vibes are flowing on the forum this weekend! You've fought a long and repetitive battle but finally a successful blow against the beast. I know you're enjoying an almost unbelievable bit of news, but true it is and it's your time to celebrate my friend. I can't be happier for you! .5% relapse??? I like them kinda odds! Good luck....
Tig
Some of the Best News I've had in a long time!
After many trials (since 1999, Interferon in various formulations and enough Ribavirin to fill a room), and prescription drugs (Incivek was the worst)...,
then 48 Weeks of Sofosbuvir (7977) and Ribavirin (undetected at day 3 on)
12 Week Post Treatment: HCV RNA PCR TAQMAN 2.0 -- HCV RNA not detected.
According to trial coordinator, if undetected @ week 12 post, there is less than .5% chance of a reoccurrence. Next check is 3 months.
Looks like some of this poison we take to fight the dragon may actually work!
To those on treatment, hang tough!
Pressure test went well. Pressure was reduced from 19 (at the start of the trial) to 14 (last week) which is good (I'm told) showing I have mild portal hypertension. Cirrhosis and portal hypertension were requirements of the Gilead GS7977 study. Had post treatment blood work last Monday (same day as pressure test). 2 week post treatment blood work this Friday.
Thank you for letting me know, at least I wont have to worry about being a bag of bones on my TX when I start. Keeping my fingers crossed for you! :D
Congragulations on being undetected!
Thank you all,
Lisa,
I actually wish there was some weight loss, but I gained a little. I'm over weight to being with, and my body is probably getting used to this "stuff."
Malcolm,
Cirrhotics and portal hypertension (I've had a couple esophageal varices banding procedures) were requirements of this trial. Transjugular hepatic venous pressure test was also a requirement at the beginning and the end.
Scot
Hi Scott,
Congratulations on being undetedected! I was wondering if you had experienced any weight loss on this combination? The old treatment we heard a lot about weight loss and this combination....
Thanks...
Hi Scott, nice to hear from you again! I really admire your determination having been through so many different treatments, and I`m so pleased this trial has gone so well for you...Und from day 3 is fantastic!!
Thanks for sharing your experiences with the side effects, this is very useful for us to hear about. Even with 48 weeks of fatigue, insomnia etc, this must have been a breeze for you compared with previous treatments, and especially with incivek!
Wishing you all the best for SVR, I`d say you have good reason to be optimistic this time around!
Keep us posted!
Hi Scot,
Good to hear from you! Wow, that's a lot of Sovaldi- it sounds easier than the Incivek triple.
I'm interested in the transjugular hepatic venous pressure test. Is that only for cirrhotics? It's a hell of a way to test for portal hypertension but certainly accurate.
Onwards to SVR. Cheers.
Hey Scot
That is great news for all to hear, wow 48 weeks of Sofosbuvir have not heard of that trial.
Hope all goes well with your other issues and please stay in touch, SVR is on its way.
matt
Haven't posted in a while... was kinda of scolded by trial coordinator for posting/sharing too much.
Coming to the end of 48 weeks of Sofosbuvir (400mg x 1 a day) and Ribavirin (200mg 3 x am, 3 x pm). 9 days left.
Undetectable from day 3 on. This stuff works for me. Sad to hear it now costs a grand a pill.
Side effects: some loss of energy/drive, insomnia, some general aches and pains, but no worse than the many other treatments.
Next visit is Trans-jugular Hepatic Venous Pressure test. Had one going in and one coming out.
Next milestone is post treatment SVR. All fingers crossed.
My thoughts and prayers continue to go out to the entire HCV Community!
If your on treatment, hang in!!! Fight the good fight.
Thanks to those who have been through the various clinical trials (as i have) to test these concoctions.
I've lost track of how many times I've taken Ribavirin, Interferon (of one form or the other), and Oh! the pain from Teleprevir/Incivek but it would have been worth it if there was SVR.
-- Edited by scotu on Friday 7th of February 2014 04:29:55 PM