Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
Mark Y said
Feb 13, 2014
senderton wrote:
I just ran into this forum because I was researching to see if insurance companies were approving off-label combination of Olysio and Sovaldi. My doctor is trying to get that combination approved for me without Riba. Trying to find out what insurance companies are approving the off-label combination.
Hi senderton, I'm not sure what insurance companies are covering this but I have Anthem Blue Cross and mine was approved very fast, even my Dr. and nurse were both very surprised on how quick it was. If you use the co-pay coupons also the price becomes very affordable. A 28 day supply of both Sovaldi and Olysio cost me just $65. I hope everything works out for you.
Cinnamon Girl said
Feb 12, 2014
Hi Stephen, welcome from me too.
This is the thread that Tig56 mentioned, and I have now added your post to it so that others on the same treatment combo can reply to you.
We have had several new members joining recently who have had this off label treatment approved by their insurance companies, so best of luck!
Tig said
Feb 12, 2014
Hello Senderton,
I'd like to welcome you to the forum! We don't have a list of insurance companies approving this off label treatment. Primarily because it's off label and it's approved on a case by case basis by the insurance companies. Each case is different and will depend on the appeal made by your doctor. There are attempts being made now to fast track getting that off label classification changed to a routine standard of care. I'm going to move this post to a thread already established on the forum. There you will find others already taking this treatment. They'll be able to help you further. Please feel free to introduce yourself in the New Members section and let us know a little about yourself, genotype, liver function tests, etc. good luck!
Tig
senderton said
Feb 12, 2014
I just ran into this forum because I was researching to see if insurance companies were approving off-label combination of Olysio and Sovaldi. My doctor is trying to get that combination approved for me without Riba. Trying to find out what insurance companies are approving the off-label combination.
Gator Man said
Feb 12, 2014
I will happily stay a day behind in Tx Dragon Slayer, so long as we both finish UND!
It can be surprising how low your CBC levels can go without being aware anything is wrong. In 1984, I was nearing finals in law school and started to notice some fatigue, tachycardia and was ghostly pale. Feeling lousy after class one day and doing the smart thing, I went for a 4 mile run and thought I was having a heart attack at the end. Went to the campus clinic the next day (because heart attacks can wait if you are busy) and discovered that my HB was 3.2, platelets 4 and total WBC at essentially 0.The clinic hematologist was surprised that I was still alive, much less walking into the clinic under my own steam I was diagnosed with aplastic anemia. After a month in the hospital, numerous transfusions, (where I probably contracted HCV) and gamma globulin therapy, my CBC returned to normal. I don't know if there is anything to be learned from my little personal history other than your HB and hematocrit can go extremely low if you blindly ignore how you feel and that fatigue and exhaustion are not to be ignored. Glad you all are staying on top of your CBC levels.
-- Edited by Gator Man on Wednesday 12th of February 2014 05:29:44 PM
OldenSlow said
Feb 11, 2014
Thanks for the input, Dragon Slayer. It is appreciated. They mentioned prior to treatment that lowering the Riba dose would be the first line of defense, should the numbers get too wonky. I'm sure they will drop further, but I'm not going to worry about it. Glad to hear my numbers compare favorably to yours, since you seem to be responding well, VL-wise. Post back, if you will, with anything pertinent from tomorrow's CBC.
Wayne
Hep-C Dragon Slayer said
Feb 11, 2014
Congrats Wayne.
Your week two CBC results seem to on pace with my week two results.
My week 4 CBC had my Hemoglobin drop to 13 from 16. Then week 5 CBC it dropped to 10.
Doc said little concerned on the big drop two weeks in a row but she is not worried until its below 8. She did reduce my Riba from 1200 (two pills a day) to 900. I take one 600 in am and half a pill in evening.
Tomorrow will be another CBC, cant wait.....
Hep-C Dragon Slayer said
Feb 11, 2014
CONGRATS Gatorman. Great news on day 28. UND.....
I still do not have my day 30 results back yet, hopefully tomorrow.
Looks like I am about 24 hours in front of you.
OldenSlow said
Feb 11, 2014
Two week labs are in but not much to report. It was a bare bones CBC, with no LFT"S or VL checks done. That will come in nine days.
Of note:
Hemoglobin - dropped from 14.8 to 13.6 g/dL Hematocrit - dropped from 44 to 40% Platelets - increased from 60 to 81 K/uL
And that's about it. All else pretty much at baseline. Tx is going well. Some sleep issues and a little itching, otherwise I wouldn't even know I was being treated.
Take care, all
Wayne
maddie said
Feb 11, 2014
Welcome, Mark and Pierre. Let's hope this combination is the answer for us all. Pierre, wish I could give up sugar like you...it is definitely a problem for me. Love sweets.
Am I the only Gt1a (with the Q80K polymorphism)? I know that 1b has a more favorable response to medications. I am Patiently waiting to see my 2 week resuts on tx. I called today to find out and got voice mail again.
Gator Man said
Feb 11, 2014
I'm on day 35 of Tx with Sovaldi/Olysio without any patent side effects (perhaps a slight increase in insomnia). I have been taking both in the morning, shortly after waking up and before breakfast. In my case, taking both pills at the beginning of the day was likely to be more consistent and eliminated forgetting the second pill until bed time. Otherwise, dividing the dosage makes perfect sense.
I exercise 5 days a week for the last several years and have had no perceptible change resulting from Tx. Like you Pierre, I am probably in better physical shape than at any point since turning 30. With the exception of my failed Pegasys/Riba experience, I've not had any condition warranting medication and was asymptomatic for liver disease issues until recently. I now realize that with compensated cirrhosis, feeling well and good health are not a given. Even prior to diagnosis with cirrhosis, but with the knowledge that the day of reckoning would come, I have gone to a more liver friendly diet, although can't claim to be sugar free.
Obviously, the most significant issue for ongoing health is beating HCV for good. Given yesterday's UND results, I believe for the first time in over a decade that there is hope for all of us, particularly prior null responders. I've got my fingers crossed for achieving post Tx SVR. but am taking it one day at a time.
-- Edited by Gator Man on Tuesday 11th of February 2014 04:09:26 PM
pierre said
Feb 11, 2014
Hi, I'm new here, so a quick résumé: I started the Sovaldi/Olysio treatment 5 days ago. Taking one pill in the morning, the other in the afternoon, on the theory that if one of them has side-effects I may be better able to determine which one is the culprit. So far, no side effects. Will have first blood work in 10 days & will of course report back. My HCV 1b was diagnosed exactly 2 years ago & while waiting for non-interferon treatment to become available, I, with the help of my wife Nicole, have been following a very strict regimen: obviously no alcohol whatsoever, but also: a low-glycemic (no sugar at all) diet & daily exercise (walks) which allowed me to lose 35 pound so that even before starting the treatment I feel - am, in fact - in better shape than I've been since my late twenties (I'm 67). & yes, good luck to everyone!
Mark Y said
Feb 11, 2014
I just posted in the new members area. I'm very interested in this particular thread due to the fact that I'll be starting the Sovaldi/Olysio without Riba on Friday. I will share whatever information I have. Good luck to everybody!
maddie said
Feb 10, 2014
So happy for you, GatorMan! Great news for you and your wife.
Gator Man said
Feb 10, 2014
Thank you Maddie. Since we are somewhat at the forefront of the off label Tx with Solvaldi/Olysio, I certainly wish that our collective results/experience can benefit others. Having it including in one thread "is a good thing" to quote Martha Stewart.
If good things come to those who wait, then 28 days = UND! My wife is pretty happy to have this as an early Valentine's Day present (I'm pretty happy myself).
Here's hoping that everyone in the very near future will have the same good fortune in becoming UND. It's too early to say that the dragon is slayed for good, but perhaps it is on it's knees!
-- Edited by Gator Man on Monday 10th of February 2014 08:09:41 PM
maddie said
Feb 10, 2014
Appreciate your post, Gator Man. Thank you. I just thought if all of us could post in one spot that it would make it easier than trying to find info going from post to post. I was doing that but then had trouble finding the posts again if I wanted to reread something.
It took nearly 3 weeks before I got my baseline results so I figure I won't see the 2 week bld results for possibly another week. I don't think that the doctors staff that handles this is full time. And you are right...good things come to those who wait... From your lips to God's ears.... Maddie
Gator Man said
Feb 9, 2014
Just waiting for my 4 week results. I should have them as early as tomorrow, no later than Wednesday. Apparently while VL tests can be run in less than a day, the labs do them in batches. It depends on whether your sample is at the beginning or end of a batch being collected for processing as to the wait to get results. Oh well, all good things ...
OldenSlow said
Feb 9, 2014
Hi maddie,
Awaiting two weeks labs, as well. Doc's office called to say things looked stable and gave me a few details, but I want the whole report. Tomorrow, hopefully. When it arrives I will post here and we can perhaps do some comparisons. You are a week ahead of me on tx and I'm using Riba, but it might be useful to see how things stack up as we move along. No VL check for me until week four.
Be well,
Wayne
maddie said
Feb 9, 2014
Thank you Michaele.
No results yet on my 2 wk. bloods. Can't understand why it takes so long. When I hear, I'll post.
Michaele said
Feb 7, 2014
Maddie, I declined tx until interferon free approved. I was class 1-2 , stage 2-3 , so maybe because of the amount of fibrosis and bridging, I dont know. 12 wks or 6 months doesnt matter; I just dont want to do the Riba. But everyone seems ok with the Riba without the interferon; except for itch and anemia. I live 6 minutes from hosp and 15 mins from my GI. So if I need blood; I could get help STAT. Im used to the itch from hep c. Thanks for wondering about it. Hope u have an easy time of it. Michaele
maddie said
Feb 7, 2014
Thanks for the link Tig.
Michaele, I wonder if your doctor wants you to treat for 24 weeks due to relapse or non-response to a previous treatment. Have you ever treated before?
Michaele said
Feb 7, 2014
Hi Maddie, Im not approved yet. My doc wants 6mo on both plus the Riba. Dont understand why Riba or why 6mo . She said something like thats what is required. I thought required by Medicare D, but that cant be. So Im waiting and wondering. Glad to see you not suffering side effects. Will keep up if accepted. Michaele
Tig said
Feb 7, 2014
Hi Maddie,
There are a number of threads and posts on the subject. I checked our search function and found several items. Here is one of those threads. I hope these will help! I'll also look for some additional info on the subject. Be well!
Thought it would be helpful to have all those taking the off-label treatment to be grouped together in some way. If you are on Sovaldi/Olysio either with or without Riba, would you mind posting here so that we can get a better idea of how many are on these protocols, the side effects, if any, with and without riba, and the status of viral loads during treatment and at end of treatment and beyond to the 12/24 week EOT bloods. I started the two drug combo without riba 3 weeks ago for Gt1a. Haven't gotten results back yet for my 2week bloods on treatment. At baseline the vl was 1.9 million (been as high as 17 M in the past). Q80K polymorphism present. Have not had any noticeable side effects for the 3 weeks on treatment.
Hi senderton, I'm not sure what insurance companies are covering this but I have Anthem Blue Cross and mine was approved very fast, even my Dr. and nurse were both very surprised on how quick it was. If you use the co-pay coupons also the price becomes very affordable. A 28 day supply of both Sovaldi and Olysio cost me just $65. I hope everything works out for you.
Hi Stephen, welcome from me too.
This is the thread that Tig56 mentioned, and I have now added your post to it so that others on the same treatment combo can reply to you.
We have had several new members joining recently who have had this off label treatment approved by their insurance companies, so best of luck!
I'd like to welcome you to the forum! We don't have a list of insurance companies approving this off label treatment. Primarily because it's off label and it's approved on a case by case basis by the insurance companies. Each case is different and will depend on the appeal made by your doctor. There are attempts being made now to fast track getting that off label classification changed to a routine standard of care. I'm going to move this post to a thread already established on the forum. There you will find others already taking this treatment. They'll be able to help you further. Please feel free to introduce yourself in the New Members section and let us know a little about yourself, genotype, liver function tests, etc. good luck!
Tig
I just ran into this forum because I was researching to see if insurance companies were approving off-label combination of Olysio and Sovaldi. My doctor is trying to get that combination approved for me without Riba. Trying to find out what insurance companies are approving the off-label combination.
I will happily stay a day behind in Tx Dragon Slayer, so long as we both finish UND!
It can be surprising how low your CBC levels can go without being aware anything is wrong. In 1984, I was nearing finals in law school and started to notice some fatigue, tachycardia and was ghostly pale. Feeling lousy after class one day and doing the smart thing, I went for a 4 mile run and thought I was having a heart attack at the end. Went to the campus clinic the next day (because heart attacks can wait if you are busy) and discovered that my HB was 3.2, platelets 4 and total WBC at essentially 0.The clinic hematologist was surprised that I was still alive, much less walking into the clinic under my own steam I was diagnosed with aplastic anemia. After a month in the hospital, numerous transfusions, (where I probably contracted HCV) and gamma globulin therapy, my CBC returned to normal. I don't know if there is anything to be learned from my little personal history other than your HB and hematocrit can go extremely low if you blindly ignore how you feel and that fatigue and exhaustion are not to be ignored. Glad you all are staying on top of your CBC levels.
-- Edited by Gator Man on Wednesday 12th of February 2014 05:29:44 PM
Thanks for the input, Dragon Slayer. It is appreciated. They mentioned prior to treatment that lowering the Riba dose would be the first line of defense, should the numbers get too wonky. I'm sure they will drop further, but I'm not going to worry about it. Glad to hear my numbers compare favorably to yours, since you seem to be responding well, VL-wise. Post back, if you will, with anything pertinent from tomorrow's CBC.
Wayne
Congrats Wayne.
Your week two CBC results seem to on pace with my week two results.
My week 4 CBC had my Hemoglobin drop to 13 from 16. Then week 5 CBC it dropped to 10.
Doc said little concerned on the big drop two weeks in a row but she is not worried until its below 8. She did reduce my Riba from 1200 (two pills a day) to 900. I take one 600 in am and half a pill in evening.
Tomorrow will be another CBC, cant wait.....
CONGRATS Gatorman. Great news on day 28. UND.....
I still do not have my day 30 results back yet, hopefully tomorrow.
Looks like I am about 24 hours in front of you.
Two week labs are in but not much to report. It was a bare bones CBC, with no LFT"S or VL checks done. That will come in nine days.
Of note:
Hemoglobin - dropped from 14.8 to 13.6 g/dL
Hematocrit - dropped from 44 to 40%
Platelets - increased from 60 to 81 K/uL
And that's about it. All else pretty much at baseline. Tx is going well. Some sleep issues and a little itching, otherwise I wouldn't even know I was being treated.
Take care, all
Wayne
Welcome, Mark and Pierre. Let's hope this combination is the answer for us all. Pierre, wish I could give up sugar like you...it is definitely a problem for me.
Love sweets.
Am I the only Gt1a (with the Q80K polymorphism)? I know that 1b has a more favorable response to medications. I am Patiently waiting to see my 2 week resuts on tx. I called today to find out and got voice mail again.
I'm on day 35 of Tx with Sovaldi/Olysio without any patent side effects (perhaps a slight increase in insomnia). I have been taking both in the morning, shortly after waking up and before breakfast. In my case, taking both pills at the beginning of the day was likely to be more consistent and eliminated forgetting the second pill until bed time. Otherwise, dividing the dosage makes perfect sense.
I exercise 5 days a week for the last several years and have had no perceptible change resulting from Tx. Like you Pierre, I am probably in better physical shape than at any point since turning 30. With the exception of my failed Pegasys/Riba experience, I've not had any condition warranting medication and was asymptomatic for liver disease issues until recently. I now realize that with compensated cirrhosis, feeling well and good health are not a given. Even prior to diagnosis with cirrhosis, but with the knowledge that the day of reckoning would come, I have gone to a more liver friendly diet, although can't claim to be sugar free.
Obviously, the most significant issue for ongoing health is beating HCV for good. Given yesterday's UND results, I believe for the first time in over a decade that there is hope for all of us, particularly prior null responders. I've got my fingers crossed for achieving post Tx SVR. but am taking it one day at a time.
-- Edited by Gator Man on Tuesday 11th of February 2014 04:09:26 PM
Hi, I'm new here, so a quick résumé: I started the Sovaldi/Olysio treatment 5 days ago. Taking one pill in the morning, the other in the afternoon, on the theory that if one of them has side-effects I may be better able to determine which one is the culprit. So far, no side effects. Will have first blood work in 10 days & will of course report back. My HCV 1b was diagnosed exactly 2 years ago & while waiting for non-interferon treatment to become available, I, with the help of my wife Nicole, have been following a very strict regimen: obviously no alcohol whatsoever, but also: a low-glycemic (no sugar at all) diet & daily exercise (walks) which allowed me to lose 35 pound so that even before starting the treatment I feel - am, in fact - in better shape than I've been since my late twenties (I'm 67). & yes, good luck to everyone!
I just posted in the new members area. I'm very interested in this particular thread due to the fact that I'll be starting the Sovaldi/Olysio without Riba on Friday. I will share whatever information I have. Good luck to everybody!
So happy for you, GatorMan! Great news for you and your wife.
Thank you Maddie. Since we are somewhat at the forefront of the off label Tx with Solvaldi/Olysio, I certainly wish that our collective results/experience can benefit others. Having it including in one thread "is a good thing" to quote Martha Stewart.
If good things come to those who wait, then 28 days = UND!
My wife is pretty happy to have this as an early Valentine's Day present (I'm pretty happy myself).
Here's hoping that everyone in the very near future will have the same good fortune in becoming UND. It's too early to say that the dragon is slayed for good, but perhaps it is on it's knees!
-- Edited by Gator Man on Monday 10th of February 2014 08:09:41 PM
Appreciate your post, Gator Man. Thank you. I just thought if all of us could post in one spot that it would make it easier than trying to find info going from post to post. I was doing that but then had trouble finding the posts again if I wanted to reread something.
It took nearly 3 weeks before I got my baseline results so I figure I won't see the 2 week bld results for possibly another week. I don't think that the doctors staff that handles this is full time. And you are right...good things come to those who wait...
From your lips to God's ears.... Maddie
Just waiting for my 4 week results. I should have them as early as tomorrow, no later than Wednesday. Apparently while VL tests can be run in less than a day, the labs do them in batches. It depends on whether your sample is at the beginning or end of a batch being collected for processing as to the wait to get results. Oh well, all good things ...
Hi maddie,
Awaiting two weeks labs, as well. Doc's office called to say things looked stable and gave me a few details, but I want the whole report. Tomorrow, hopefully. When it arrives I will post here and we can perhaps do some comparisons. You are a week ahead of me on tx and I'm using Riba, but it might be useful to see how things stack up as we move along. No VL check for me until week four.
Be well,
Wayne
Thank you Michaele.
No results yet on my 2 wk. bloods. Can't understand why it takes so long. When I hear, I'll post.
Maddie, I declined tx until interferon free approved. I was class 1-2 , stage 2-3 , so maybe because of the amount of fibrosis and bridging, I dont know. 12 wks or 6 months doesnt matter; I just dont want to do the Riba. But everyone seems ok with the Riba without the interferon; except for itch and anemia. I live 6 minutes from hosp and 15 mins from my GI. So if I need blood; I could get help STAT. Im used to the itch from hep c. Thanks for wondering about it. Hope u have an easy time of it. Michaele
Thanks for the link Tig.
Michaele, I wonder if your doctor wants you to treat for 24 weeks due to relapse or non-response to a previous treatment. Have you ever treated before?
Hi Maddie, Im not approved yet. My doc wants 6mo on both plus the Riba. Dont understand why Riba or why 6mo . She said something like thats what is required. I thought required by Medicare D, but that cant be. So Im waiting and wondering. Glad to see you not suffering side effects. Will keep up if accepted. Michaele
Hi Maddie,
There are a number of threads and posts on the subject. I checked our search function and found several items. Here is one of those threads. I hope these will help! I'll also look for some additional info on the subject. Be well!
http://hepcfriends.activeboard.com/t56555475/new-hcv-treatment-guidelines-from-us-medical-societies-inclu/
Tig
Thought it would be helpful to have all those taking the off-label treatment to be grouped together in some way. If you are on Sovaldi/Olysio either with or without Riba, would you mind posting here so that we can get a better idea of how many are on these protocols, the side effects, if any, with and without riba, and the status of viral loads during treatment and at end of treatment and beyond to the 12/24 week EOT bloods. I started the two drug combo without riba 3 weeks ago for Gt1a. Haven't gotten results back yet for my 2week bloods on treatment. At baseline the vl was 1.9 million (been as high as 17 M in the past). Q80K polymorphism present. Have not had any noticeable side effects for the 3 weeks on treatment.