Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
Caryn said
Apr 15, 2014
Thanks Sara and Wayne! I did my labs yesterday - not sure why at one week, but whatever! I hope these results are good. I am not really sure where I started since my VL was done in the middle of Feb and was very high at 37,000,000. I hope that was a mistake, but I will never know. I guess what matters is now. I will post my results once I get them.
Congrats Sara on such a nice drop!! That is fantastic news!
Cinnamon Girl said
Apr 15, 2014
Hi Sara, great result for only 2 weeks into treatment, that`s excellent!
Don`t worry about the rise in your bilirubin, it`s almost certainly directly related to the drop in your Hgb, and is caused by the breakdown of red blood cells by the ribavirin. It will probably settle down as you go further along, and it shows that the treatment is working well!
Keep going, and best of luck!
Sara said
Apr 15, 2014
I just got my 2 week lab results - HCV RNA 16! YEAH! My platelets went up from 59 to 84. Hemoglobin down from 13.6 to 10.6. RBC down from 3.96 to 3.07. Bilirubin went up from 1.2 to 2.7 (I don't understand this). AST/ALT went down from 94/78 to 30/22.
Congrats Gatorman on EOT/UND!
Caryn - I'm glad you're able to work and exercising - don't push yourself too hard! Best wishes for good lab results.
All the success being posted here by those on this combo is truly amazing!
OldenSlow said
Apr 14, 2014
Caryn wrote:
... Is anyone still exercising?
Hi Caryn,
Week 12, same combo. I have continued to jump on the accursed treadmill most days and give it a go. Pretty pathetic sometimes honestly, but as long as I don't push too hard I feel it does more good than harm. In my case, running was ok the first couple of tx weeks, but declined after that. Things seemed to level off somewhere around the 8 week mark and have improved a bit lately. I know I'll have to clear the drugs (especially the riba) from my system before there's any normalcy on that front. Weather's improving hereabouts and I'll be able to move my act outside, which will help a lot. Pace yourself and rest as needed and hopefully you'll be able to maintain some kind of regular exercise program. Be well.
wayne
Caryn said
Apr 13, 2014
I have completed one week of treatment so far. I am going to get my bloodwork done hopefully tomorrow, but if I am unable to get away from work then it will have to be on Wednesday. Up until Friday I felt fine. I have even been riding my bike 5 to 6 miles a day. Friday I just felt exhausted and the same yesterday. So I didn't ride yesterday thinking maybe I was pushing too hard and didn't ride today either. I felt much better today. I am thinking maybe I should just go every other day and see how that goes.Is anyone still exercising? BTW - I do not leave my house without putting sunscreen with spf 50 all over any exposed skin.
So far, my sides have been minimal, but I have had a few that started later in the week. I have a few small spots where I have a rash, my mouth feels sort of raw...like when I brush my teeth the toothpaste feels like hot sauce, and of course fatigue. I do feel some muscle aches, but not that bad and a little itchy at times, but nothing like when I was on incivek. Oh, and I have been dingy as hell! I am working this time and the distraction has helped tremendously.
OldenSlow said
Apr 13, 2014
darkstar wrote:
Oldenslow, my AFP started at > 230 and on most recent labs was 3.5
Thanks. Mine was cut in half at 4 weeks, but AFP won't be checked again until EOT @ 16 wks. That's really encouraging news.
darkstar said
Apr 13, 2014
I have been in the sun and although I have been careful, I have had exposure and have not had the problems many have described.
Gatorman, there is data on improvement of fibrosis/cirrhosis. Would love to see data on the 50% number cited by Rybronco, I have not seen that.
Oldenslow, my AFP started at > 230 and on most recent labs was 3.5
Groupergetter said
Apr 12, 2014
Barnacle, I too have been in the sun my entire life. Never had a problem unless I stayed out waaaay to long with no sunscreen . I got burned once while on these meds.....it won't happen again. When working in the yard, I wear long sleeves and my fishing cap which covers my ears and neck. Actually ordered a couple more upf long sleeve T-shirts today. Some people don't seem as affected? Have my six week labs drawn Monday. Time flies when you're having fun. Wishin I was fishin
Rybronco said
Apr 12, 2014
Gatorman,
Long term studies show that those who are SVR have marked histological improvement, gradual decline in degree of fibrosis, AND 50% of patients have resolution of cirrhosis. Excellent long term outcomes after getting there!
Rockon!
Barnacle said
Apr 11, 2014
I don't know if this is the best place to post this but here it is.
When your Dr says avoid sunlight while taking Olysio he means it. I assumed that since we are just getting the first days of spring here the infrequent sunlight would be no problem. I have been on Tx for one week and I have a sunburn on the top of my head in spite of cloudy and mostly rainy days.
I will be wearing a hat and covering up from here on. I have a dark complexion and rarely use sunscreen even when I visit tropical areas but this drug has really increased my sun sensitivity.
Gator Man said
Apr 11, 2014
Thanks and congratulations to all the progress towards UND and SVR that has been posted so far. In the interim of waiting on 12 week SVR results, I am quite surprised that liver functions have returned to the clinically normal range at the same time, especially since I already have cirrhosis. I'm not sure of the medical significance of this, but hope that SVR (fingers crossed) will halt fibrotic progression and decompensation of the liver. If the trade-off is ultrasounds every six months to check for HCC, that is a far better outcome than I thought was possible a year ago!
Matt Chris said
Apr 11, 2014
Hey Gatorman
Congrats on making to EOT UND, its a very important accomplishment, now your body has to take over and carry you through the next 12 weeks. Keep yourself healthy and well nourished and well rested and and all will be fine.
Thanks for all the contributions that you have made to the forum these last 12 weeks, hoping and pulling for your SVR
matt
OldenSlow said
Apr 10, 2014
Nice, darkstar. Almost there. Your AFP still way down, or that been checked recently?
darkstar said
Apr 10, 2014
14 weeks in, LFTs are normal, undetectable virus, 13 more doses to go!!
OldenSlow said
Apr 10, 2014
Excellent news, Gator. SVR in your future, no doubt.
Groupergetter said
Apr 10, 2014
Happy for you G-man, looking forward to my next labs and the real UND.
pierre said
Apr 10, 2014
yes, VL went down from 1.8m to 25 (after 2 weeks) to UND at 6 weeks.
maddie said
Apr 10, 2014
Thanks, Pierre. Sorry your RA is giving you such a time of it.
Have you had VL checks done during tx??
pierre said
Apr 10, 2014
Congrats Maddie, congrats Gatorman, congrats everybody, in fact!Looks good for all of us.
I'm starting week 9 of 12. New blood work due at week 10. So far all looks fine, 'cept for a 4-day bout with what seems to be rheumatoid arthritis in right foot. Indeed, the only number in my counts that is still off is the rheumatoid factor which is 105 (down from 199 a year ago) [shld be lower than 40-60]. Now, there has been some mention that one of side-effects of simeprevir is joint pains, but given that I've had these high numbers even before starting on this treatment, it may not arise from the simeprevir, though I hadn't had any arthritic flare-up for a year.
Anyway, can't wait for next VC test to be sure it's still UND.
A sunny spring day in NYC, & that's exactly how I feel, even if the foot schlepps a bit...
maddie said
Apr 10, 2014
Gator, congrats on the EOT UND. Fantastic! I'm hoping for same when I get my results sometime in the next week or two.
Thanks for good wishes Tig, Matt & Jill. I will keep everyone posted over the weeks to come.
Audrey, glad you were approved for S/O combo. It really was an extremely tolerable tx. for me , and most others from what I read.
Cinnamon Girl said
Apr 10, 2014
Great to see all this good news here!
Congrats to Maddie, you`ve finished, excellent! Best of luck with your EOT results!
Well done to Gator Man, brilliant news, congrats on your continuing Und result...onwards to SVR!
And to Audrey, so pleased to see you`ve got your approval through, very good news! And don`t worry, It`s fine to post here!
Keep it coming folks, and best of luck to all!
Rybronco said
Apr 10, 2014
Gator Man,
Happy for you brother! Like Tig, I'm convinced you will see that UND move to SVR. This is truley an exciting time to be a part of treatment for Hep C.
In the next month or two there will be about twenty or so folks reaching the finishing line, and even more after that! My last refill arrives today!!
Wish you well.
Rockon!
Tig said
Apr 10, 2014
Hey Gator Man,
Yeah buddy!!!!! Congrats dude! I have no doubt that UND will quickly turn to SVR. I can feel your relief and elation for not only being finished but for all the possibilities your new Hep C free future has in store for you. Enjoy it Brother, you earned it...
I can soooo relate to the feeling of doom you mentioned. I felt like that since my diagnosis. I have not felt that doom feeling since starting this combo regimen and what a relief that has been.
Congrats and keep us posted!
Rockon!
Sara said
Apr 10, 2014
Congrats Audrey!
I'm so happy for you getting approval from your insurance company for Sovaldi/Olysio treatment.
-- Edited by Sara on Thursday 10th of April 2014 12:03:36 PM
Groupergetter said
Apr 10, 2014
Audrey, please keep us posted of your start date. Also want to see results of your first labs. This regimen appears to be working great for so many. To have a real hope of SVR and feeling better is very uplifting. Enjoy the day.
Audreyanna said
Apr 9, 2014
Hi everyone. Me again. Good news - I got an approval letter from my insurance company for the off label olysio/sovaldi and still may need to wait another 6 weeks to get it but yay! I'm excited! I haven't felt so good in years. The doom is lifting!
hope I'm posting in the right spot. Still a little confused with this site. Maybe the brain fog will leave too!
Audrey
Matt Chris said
Apr 9, 2014
Hey Maddie
Congrats on your EOT, its a great time from that free and floating feeling ENJOY
matt
Tig said
Apr 9, 2014
Congratulations Maddie! I know you're feeling good tonight! I wish you the very best of luck and look forward to hearing about your first SVR. Enjoy knowing this chapter is now in your rear view mirror...
Tig
maddie said
Apr 9, 2014
Thank you Rybronco and Groupergetter. I wish SVR for the both of you too. Have to admit, I am nervous but I need to have faith and positive thoughts.
Groupergetter said
Apr 9, 2014
Maddie, hoping and praying you win the hard fought battle for SVR. Hoping your life gets better with each passing day.
Rybronco said
Apr 9, 2014
Congrats on finishing Maddie!! You are leading the way!!!
SVR is in sight!!
Rockon!
maddie said
Apr 9, 2014
Thanks so much, Wayne. Saw you got a 4 wk extension, so guess you can keep breathing till then!
Thanks Sara. Exhale will be a big sigh of relief when (positive thoughts) I reach SVR.
Thanks to all of you for your support. This is a wonderful forum. Many knowledgeable people. And I appreciate you all. Maddie
OldenSlow said
Apr 9, 2014
Congrats, Maddie! It's gotta feel good. You'll have lots of company in your breath holding with all of the upcoming followup labs.
Sara said
Apr 9, 2014
Congrats on EOT Maddie!
We're a little off (label) but right on (track)!
Don't forget to exhale
maddie said
Apr 9, 2014
Last of my pills taken this morning. First EOT blood draw tomorrow. Now I hold my breath....and pray.
Sara said
Apr 5, 2014
Thank you Maddie and Greg.
Yes - onward to SVR!
maddie said
Apr 4, 2014
Hi Sara, welcome and glad to see you have started treatment on this combo. So far, all of us here have reached UND during tx while on Sovaldi, Olysio with or without Riba.
Caryn, excited for you to get started on tx.
Gator thanks for the heads up on the coming COSMOS results. I'm anxious to read them.
Groupgetter....Congratulations on your 4 wk (minus 4 day ) results. Great news!!! I have six days left of tx ,counting today. Then the waiting begins. I need some ruby red slippers to click together.....There's no place like SVR, there's no place like SVR.....
Groupergetter said
Apr 3, 2014
Congrats Sara, you are gonna be a happy camper. This is a fantastic tx regimen, we are fortunate to be on it. Hoping you have the excitement and joy so many others here are finding with this combination. Onwards to SVR.
Tig said
Apr 3, 2014
Hi Sarah,
Thanks for the update on your co infection. If you haven't seen our new section here on Co-infection, please take a look at the information. We're just getting it started and your input would be really helpful.
Keep in touch and good luck with your treatment and tests!
Tig
Sara said
Apr 3, 2014
Thank you for welcoming me to the forum Tig.
I am co-infected with hiv and hep c from a blood transfusion.
I will post test results as I get them.
I hope all infected - especially those co-infected - have the same opportunities to treat and cure without interferon!!!
Tig said
Apr 3, 2014
Hi Sara,
Welcome to the forum! I'm glad you introduced yourself. We also have a New Members section if you'd also like to say hi there.
So glad you got the opportunity to treat with this triple combo! You will have a great chance at reaching the ultimate goal of SVR! If I may ask, what are you co infected with? The new treatment options available now are giving people with different co infected illnesses good reason to treat. I wish you the best of luck. I'll look forward to hearing more about you and your test results as they come available!
Tig
Sara said
Apr 3, 2014
I started tx a week ago - Sovaldi/Olysio/Riba and am glad to see all the posts here of those on the same tx and those already cured.
Congrats and good luck to all
I am SO grateful for this new tx and looking optimistically forward to the 4 week appt with my dr and improved labs. So far, the only side effect I've noticed is insomnia. I've suffered with itching from cirrhosis and hopefully this will stop soon.
I qualified for PAP since I have no rx ins and get Sovaldi and Olysio $0. Riba is now generic so no PAP. I pay $.60 per cap (so much for generic being inexpensive), making my total for riba $250. I'm worth it Rx for tabs is $7.15 per tab (makes no sense).
I have been turned down for trials the past 3 years due to co-infection, cirrhosis and low platelets. I had my local gastro doc refuse to off label rx. Last month a trial dr I met 2 1/2 years ago reached out to me and offered off label rx. I drove 9 hours to get it.
Victory for us all!
Caryn said
Apr 3, 2014
This is good news as I will be receiving my meds today, and will start treatment on Monday. I will be on Sovaldi/Olysio/Riba. When they called me for the dosing schedule, they said they didn't have a script for the Riba. As much as I would like NOT to take it, I knew that one more piece of ammunition is good. I called my nurse and told her that the doctor had told me I would be on Riba. They called it in and it will be delivered today with the rest of my meds. This is a perfect example of why you really need to be on top of your treatment and listen and take notes at the doctors office. This could have been easily over looked.
After the last treatment failure, I am a little skeptical, but after reading about the results I feel a little better. My last VL was taken on Feb 14th and it was 37,000,000and yes I have that correct. I could not believe it was so high! It will be interesting to see what my labs will be at the 2 week draw.
Gator Man said
Apr 3, 2014
Outstanding Groupergetter, Rybronco and Darkstar!!! As I recently posted, I think our good response will mirror the COSMOS results that will be announced next week in London. I was informed without knowing the specifics, that the SVR results are very high. I believe we all will be SVR12 in the near future!
I think you are at a great time for treatment options Fireman Rob, and wish you the best going forward!
P.S. It will come as no surprise that I am a lifelong and loyal University of Florida fan. With the NCAA Final Four starting on Saturday, all I can say is GO GATORS!!! For those of you who may have have no interest in American collegiate sports, I humbly ask for your indulgence.
-- Edited by Gator Man on Thursday 3rd of April 2014 02:57:52 PM
Rybronco said
Apr 3, 2014
I reasched my halfway point today....6 weeks!!
The reality of this treatment actually curing me is starting to take some footing. Although, I'm still not counting my chickens yet. The fact that I am UND and my liver is not under active attack is a blessing to me.
I've got smiles to share! You guys rock!
Rybronco said
Apr 3, 2014
Congrats to you Groupergetter and Darkstar!!!! These results are absolutely AWESOME!!!!
Good luck to you Fireman Rob m- I'm pullin for your approval.
Rockon!
Dee Dee said
Apr 2, 2014
It makes me so happy to hear everyones good results!!! Things are definitely looking like they've gotten the cure this time!! Yeah for all of us!!
jimbob said
Apr 2, 2014
Good deal and congrats Grouper! Hopefully it won't be long now to SVR.
Thanks Sara and Wayne! I did my labs yesterday - not sure why at one week, but whatever! I hope these results are good. I am not really sure where I started since my VL was done in the middle of Feb and was very high at 37,000,000. I hope that was a mistake, but I will never know. I guess what matters is now. I will post my results once I get them.
Congrats Sara on such a nice drop!! That is fantastic news!
Hi Sara, great result for only 2 weeks into treatment, that`s excellent!
Don`t worry about the rise in your bilirubin, it`s almost certainly directly related to the drop in your Hgb, and is caused by the breakdown of red blood cells by the ribavirin. It will probably settle down as you go further along, and it shows that the treatment is working well!
Keep going, and best of luck!
I just got my 2 week lab results - HCV RNA 16! YEAH! My platelets went up from 59 to 84. Hemoglobin down from 13.6 to 10.6. RBC down from 3.96 to 3.07. Bilirubin went up from 1.2 to 2.7 (I don't understand this). AST/ALT went down from 94/78 to 30/22.
Congrats Gatorman on EOT/UND!
Caryn - I'm glad you're able to work and exercising - don't push yourself too hard! Best wishes for good lab results.
All the success being posted here by those on this combo is truly amazing!
Hi Caryn,
Week 12, same combo. I have continued to jump on the accursed treadmill most days and give it a go. Pretty pathetic sometimes honestly, but as long as I don't push too hard I feel it does more good than harm. In my case, running was ok the first couple of tx weeks, but declined after that. Things seemed to level off somewhere around the 8 week mark and have improved a bit lately. I know I'll have to clear the drugs (especially the riba) from my system before there's any normalcy on that front. Weather's improving hereabouts and I'll be able to move my act outside, which will help a lot. Pace yourself and rest as needed and hopefully you'll be able to maintain some kind of regular exercise program. Be well.
wayne
I have completed one week of treatment so far. I am going to get my bloodwork done hopefully tomorrow, but if I am unable to get away from work then it will have to be on Wednesday. Up until Friday I felt fine. I have even been riding my bike 5 to 6 miles a day. Friday I just felt exhausted and the same yesterday. So I didn't ride yesterday thinking maybe I was pushing too hard and didn't ride today either. I felt much better today. I am thinking maybe I should just go every other day and see how that goes. Is anyone still exercising? BTW - I do not leave my house without putting sunscreen with spf 50 all over any exposed skin.
So far, my sides have been minimal, but I have had a few that started later in the week. I have a few small spots where I have a rash, my mouth feels sort of raw...like when I brush my teeth the toothpaste feels like hot sauce, and of course fatigue. I do feel some muscle aches, but not that bad and a little itchy at times, but nothing like when I was on incivek. Oh, and I have been dingy as hell! I am working this time and the distraction has helped tremendously.
Thanks. Mine was cut in half at 4 weeks, but AFP won't be checked again until EOT @ 16 wks. That's really encouraging news.
I have been in the sun and although I have been careful, I have had exposure and have not had the problems many have described.
Gatorman, there is data on improvement of fibrosis/cirrhosis. Would love to see data on the 50% number cited by Rybronco, I have not seen that.
Oldenslow, my AFP started at > 230 and on most recent labs was 3.5
Barnacle, I too have been in the sun my entire life. Never had a problem unless I stayed out waaaay to long with no sunscreen . I got burned once while on these meds.....it won't happen again. When working in the yard, I wear long sleeves and my fishing cap which covers my ears and neck. Actually ordered a couple more upf long sleeve T-shirts today. Some people don't seem as affected? Have my six week labs drawn Monday. Time flies when you're having fun. Wishin I was fishin
Gatorman,
Long term studies show that those who are SVR have marked histological improvement, gradual decline in degree of fibrosis, AND 50% of patients have resolution of cirrhosis. Excellent long term outcomes after getting there!
Rockon!
When your Dr says avoid sunlight while taking Olysio he means it. I assumed that since we are just getting the first days of spring here the infrequent sunlight would be no problem. I have been on Tx for one week and I have a sunburn on the top of my head in spite of cloudy and mostly rainy days.
I will be wearing a hat and covering up from here on. I have a dark complexion and rarely use sunscreen even when I visit tropical areas but this drug has really increased my sun sensitivity.
Thanks and congratulations to all the progress towards UND and SVR that has been posted so far. In the interim of waiting on 12 week SVR results, I am quite surprised that liver functions have returned to the clinically normal range at the same time, especially since I already have cirrhosis. I'm not sure of the medical significance of this, but hope that SVR (fingers crossed) will halt fibrotic progression and decompensation of the liver. If the trade-off is ultrasounds every six months to check for HCC, that is a far better outcome than I thought was possible a year ago!
Hey Gatorman
Congrats on making to EOT UND, its a very important accomplishment, now your body has to take over and carry you through the next 12 weeks. Keep yourself healthy and well nourished and well rested and and all will be fine.
Thanks for all the contributions that you have made to the forum these last 12 weeks, hoping and pulling for your SVR
matt
Nice, darkstar. Almost there. Your AFP still way down, or that been checked recently?
14 weeks in, LFTs are normal, undetectable virus, 13 more doses to go!!
Excellent news, Gator. SVR in your future, no doubt.
Happy for you G-man, looking forward to my next labs and the real UND.
yes, VL went down from 1.8m to 25 (after 2 weeks) to UND at 6 weeks.
Thanks, Pierre. Sorry your RA is giving you such a time of it.
Have you had VL checks done during tx??
Congrats Maddie, congrats Gatorman, congrats everybody, in fact!Looks good for all of us.
I'm starting week 9 of 12. New blood work due at week 10. So far all looks fine, 'cept for a 4-day bout with what seems to be rheumatoid arthritis in right foot. Indeed, the only number in my counts that is still off is the rheumatoid factor which is 105 (down from 199 a year ago) [shld be lower than 40-60]. Now, there has been some mention that one of side-effects of simeprevir is joint pains, but given that I've had these high numbers even before starting on this treatment, it may not arise from the simeprevir, though I hadn't had any arthritic flare-up for a year.
Anyway, can't wait for next VC test to be sure it's still UND.
A sunny spring day in NYC, & that's exactly how I feel, even if the foot schlepps a bit...
Gator, congrats on the EOT UND. Fantastic! I'm hoping for same when I get my results sometime in the next week or two.
Thanks for good wishes Tig, Matt & Jill. I will keep everyone posted over the weeks to come.
Audrey, glad you were approved for S/O combo. It really was an extremely tolerable tx. for me , and most others from what I read.
Great to see all this good news here!
Congrats to Maddie, you`ve finished, excellent! Best of luck with your EOT results!
Well done to Gator Man, brilliant news, congrats on your continuing Und result...onwards to SVR!
And to Audrey, so pleased to see you`ve got your approval through, very good news! And don`t worry, It`s fine to post here!
Keep it coming folks, and best of luck to all!
Gator Man,
Happy for you brother! Like Tig, I'm convinced you will see that UND move to SVR. This is truley an exciting time to be a part of treatment for Hep C.
In the next month or two there will be about twenty or so folks reaching the finishing line, and even more after that! My last refill arrives today!!
Wish you well.
Rockon!
Hey Gator Man,
Yeah buddy!!!!! Congrats dude! I have no doubt that UND will quickly turn to SVR. I can feel your relief and elation for not only being finished but for all the possibilities your new Hep C free future has in store for you. Enjoy it Brother, you earned it...
Tig
4/2/2014=84 days=EOT=Still UND=all blood tests normal.
Audrey,
That's not good news....thats GREAT news!!!
I can soooo relate to the feeling of doom you mentioned. I felt like that since my diagnosis. I have not felt that doom feeling since starting this combo regimen and what a relief that has been.
Congrats and keep us posted!
Rockon!
Congrats Audrey!
I'm so happy for you getting approval from your insurance company for Sovaldi/Olysio treatment.
-- Edited by Sara on Thursday 10th of April 2014 12:03:36 PM
Audrey, please keep us posted of your start date. Also want to see results of your first labs.
This regimen appears to be working great for so many. To have a real hope of SVR and feeling better is very uplifting. Enjoy the day.
Hi everyone. Me again. Good news - I got an approval letter from my insurance company for the off label olysio/sovaldi and still may need to wait another 6 weeks to get it but yay! I'm excited! I haven't felt so good in years. The doom is lifting!
hope I'm posting in the right spot. Still a little confused with this site. Maybe the brain fog will leave too!
Audrey
Hey Maddie
Congrats on your EOT, its a great time from that free and floating feeling ENJOY
matt
Congratulations Maddie! I know you're feeling good tonight! I wish you the very best of luck and look forward to hearing about your first SVR. Enjoy knowing this chapter is now in your rear view mirror...
Tig
Thank you Rybronco and Groupergetter. I wish SVR for the both of you too. Have to admit, I am nervous but I need to have faith and positive thoughts.
Maddie, hoping and praying you win the hard fought battle for SVR. Hoping your life gets better with each passing day.
Congrats on finishing Maddie!! You are leading the way!!!
SVR is in sight!!
Rockon!
Thanks so much, Wayne. Saw you got a 4 wk extension, so guess you can keep breathing till then!
Thanks Sara. Exhale will be a big sigh of relief when (positive thoughts) I reach SVR.
Thanks to all of you for your support. This is a wonderful forum. Many knowledgeable people. And I appreciate you all. Maddie
Congrats, Maddie! It's gotta feel good. You'll have lots of company in your breath holding with all of the upcoming followup labs.
Congrats on EOT Maddie!
We're a little off (label) but right on (track)!
Don't forget to exhale
Last of my pills taken this morning.
First EOT blood draw tomorrow. Now I hold my breath....and pray.
Thank you Maddie and Greg.
Yes - onward to SVR!
Hi Sara, welcome and glad to see you have started treatment on this combo. So far, all of us here have reached UND during tx while on Sovaldi, Olysio with or without Riba.
Caryn, excited for you to get started on tx.
Gator thanks for the heads up on the coming COSMOS results. I'm anxious to read them.
Groupgetter....Congratulations on your 4 wk (minus 4 day
) results. Great news!!! I have six days left of tx ,counting today. Then the waiting begins. I need some ruby red slippers to click together.....There's no place like SVR, there's no place like SVR.....
Congrats Sara, you are gonna be a happy camper. This is a fantastic tx regimen, we are fortunate to be on it. Hoping you have the excitement and joy so many others here are finding with this combination. Onwards to SVR.
Hi Sarah,
Thanks for the update on your co infection. If you haven't seen our new section here on Co-infection, please take a look at the information. We're just getting it started and your input would be really helpful.
Keep in touch and good luck with your treatment and tests!
Tig
Thank you for welcoming me to the forum Tig.
I am co-infected with hiv and hep c from a blood transfusion.
I will post test results as I get them.
I hope all infected - especially those co-infected - have the same opportunities to treat and cure without interferon!!!
Hi Sara,
Welcome to the forum! I'm glad you introduced yourself. We also have a New Members section if you'd also like to say hi there.
So glad you got the opportunity to treat with this triple combo! You will have a great chance at reaching the ultimate goal of SVR! If I may ask, what are you co infected with? The new treatment options available now are giving people with different co infected illnesses good reason to treat. I wish you the best of luck. I'll look forward to hearing more about you and your test results as they come available!
Tig
I started tx a week ago - Sovaldi/Olysio/Riba and am glad to see all the posts here of those on the same tx and those already cured.
Congrats and good luck to all
I am SO grateful for this new tx and looking optimistically forward to the 4 week appt with my dr and improved labs. So far, the only side effect I've noticed is insomnia. I've suffered with itching from cirrhosis and hopefully this will stop soon.
I qualified for PAP since I have no rx ins and get Sovaldi and Olysio $0. Riba is now generic so no PAP. I pay $.60 per cap (so much for generic being inexpensive), making my total for riba $250. I'm worth it
Rx for tabs is $7.15 per tab (makes no sense).
I have been turned down for trials the past 3 years due to co-infection, cirrhosis and low platelets. I had my local gastro doc refuse to off label rx. Last month a trial dr I met 2 1/2 years ago reached out to me and offered off label rx. I drove 9 hours to get it.
Victory for us all!
This is good news as I will be receiving my meds today, and will start treatment on Monday. I will be on Sovaldi/Olysio/Riba. When they called me for the dosing schedule, they said they didn't have a script for the Riba. As much as I would like NOT to take it, I knew that one more piece of ammunition is good. I called my nurse and told her that the doctor had told me I would be on Riba. They called it in and it will be delivered today with the rest of my meds. This is a perfect example of why you really need to be on top of your treatment and listen and take notes at the doctors office. This could have been easily over looked.
After the last treatment failure, I am a little skeptical, but after reading about the results I feel a little better. My last VL was taken on Feb 14th and it was 37,000,000and yes I have that correct. I could not believe it was so high! It will be interesting to see what my labs will be at the 2 week draw.
Outstanding Groupergetter, Rybronco and Darkstar!!! As I recently posted, I think our good response will mirror the COSMOS results that will be announced next week in London. I was informed without knowing the specifics, that the SVR results are very high. I believe we all will be SVR12 in the near future!
I think you are at a great time for treatment options Fireman Rob, and wish you the best going forward!
P.S. It will come as no surprise that I am a lifelong and loyal University of Florida fan. With the NCAA Final Four starting on Saturday, all I can say is GO GATORS!!! For those of you who may have have no interest in American collegiate sports, I humbly ask for your indulgence.
-- Edited by Gator Man on Thursday 3rd of April 2014 02:57:52 PM
I reasched my halfway point today....6 weeks!!
The reality of this treatment actually curing me is starting to take some footing. Although, I'm still not counting my chickens yet. The fact that I am UND and my liver is not under active attack is a blessing to me.
I've got smiles to share! You guys rock!
Congrats to you Groupergetter and Darkstar!!!! These results are absolutely AWESOME!!!!
Good luck to you Fireman Rob m- I'm pullin for your approval.
Rockon!
It makes me so happy to hear everyones good results!!! Things are definitely looking like they've gotten the cure this time!! Yeah for all of us!!
Good deal and congrats Grouper! Hopefully it won't be long now to SVR.
jimbob