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Post Info TOPIC: Combo drug prescription of Sovaldi and Olysio with Ribavirin !


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RE: Combo drug prescription of Sovaldi and Olysio with Ribavirin !


Steverino wrote:

Wow, everyone seems to not have any side effects. I,m on my 10th day and have had nausea, headaches, nightmares (2 nights), insomnia and really don't feel very well.

Not near the discomfort of 1&1/2 years of interferon.

Hope it's up hill from here.


 Welcome Steverino:

Side effects are common with all hepc treatments but not everyone experiences the same ones or to the same degree.  Side effects can also change, and either decrease or increase, during the course of tx.  I noticed you are on the S/0 combo without riba.  Many people will have side effects with this combo too and nausea, headaches, and insomnia are common enough that they are listed on the labels.  Also, this is an experimental treatment.  Truth be told all the hepc txs are experimental to some degree because they are so new.

If there is a specific side effect you want to talk about just start a thread and there will be others who can offer their experiences and perhaps things they did that lessened the side effect.  For example, drinking plenty of water is always a good idea.  If your side effects become severe or are unusual you should, of course, seek professional medical care.  

I personally appreciate your candor very much.  It helps others to realistically evaluate how they might feel so they can plan accordingly, just in case.  I hope things improve, and that is very likely.  It does take a while to get used to any new meds.  Thank you for sharing your experience.  



__________________

Diagnosed with HepC in 2011, Incivek triple therapy in 2011, tx discontinued week 10, Genotype 1a, CT, VL 7mill, early cirrhosis dx in 2012, age 57, female, waiting for new DAAs.



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Wow, everyone seems to not have any side effects. I,m on my 10th day and have had nausea, headaches, nightmares (2 nights), insomnia and really don't feel very well.

Not near the discomfort of 1&1/2 years of interferon.

Hope it's up hill from here.



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Sm


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Great news, Dragon-Slayer!!!  biggrin Even more amazing considering the high doses of steroids.  Very impressive...nothing to replicate.

I am extremely happy for you.

 



__________________

Dx. 2005...liver bx.: stg 2  gr 1. at that time  - GT 1a Contracted due to multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!!



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Well we have achieve    SVR  8

For all those on the new tx,  so far so good. 

As one of the early new combo tx users of Olysio and Sovaldi and Ribaviran, 

only advice:

Stay strong during your 12 week run.  It works.......

 

By the way,  Prednisone (Sarcoid treatment) in mega doses does not effect the results of HEP C as long as you hit "not detected" at end of your 12 week tx. 

My doctor and her group of doctors plus the Oylsio and Sovaldi reps were concerned that Prednisone may effect the SVR opportunity.  Prednisone does speed up the replication process of HEP C and complicates the liver as well as the lungs.

There is also some concern that HEP C virus and Sarciods go hand in hand but my decision to proceed on Prednisone tx was based on once I achieved SVR there was no opportunity to replicate HEP C or anything to speed up.

So far so good......

 

 



__________________

GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14



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Oh Wow, Dragon Slayer, just saw this post that you are UND at 4 wk EOT.  Congratulations!!!  Glad that you are able to tx the sarcoidosis now. 

I had been away for a while and am trying to catch up with everyones progress.  I, too, am UND at the 4 wk EOT and have been dancing on clouds. 



__________________

Dx. 2005...liver bx.: stg 2  gr 1. at that time  - GT 1a Contracted due to multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!!



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Dragon Slayer -   Thank you for the detailed update. It's nice hearing from those at the front of the class. May the SVR's continue and the sarcoidosis disappear. Quite the year for you, I daresay.

wayne



__________________

65 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba 1/14 - 5/14 - VL ~4mil - 62 @ 4 wks -  UND @ 8 wks - UND @ EOT + 4

 



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Hi Dragon-Slayer,

Congrats on the SVR4. Look forward to the SVR12.

The relationship between sarcoidosis and HepC is well documented. Some believe HepC triggers the sarcoid, and they have been many case reports of sarcoid appearing after starting Interferon and Ribavirin.

I hope the steroids clear it up, and you can enjoy life, HCV and sarcoid free. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  cirrhotic, 71 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +52 weeks.

Malcolm



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Excellent news!!



__________________

GT 1a, CT. Started Incivek 1/2013, vl 810 @ 2 week labs, 610 @ 4 week labs, 3000 @ 8 week labs, tx discontinued. 

04/07/2014 started tx with Sovaldi/Olysio/Riba. VL 39 mil. 1 week VL 230, 3 week VL 40, 5 weeks UND, EOT-UND-06/29/14 



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Hey Dragon Slayer,

That's excellent news Brother!! Time to concentrate on the recovery phase of one and the attack phase of the next. Hopefully soon  you'll find yourself healthy and free of any treatment requirements altogether. Sounds like you're well on your way! Continued good luck and be sure to let us know when that SVR 12 comes rolling in, that's going to be another happy day! Be well....

Tig



__________________

GT1A Int/Riba/Vic SOT: 05/23/13  EOT: 12/04/13=ETR  02/27/14=SVR12 04/30/14=SVR21...Cured!



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Hey Hep-C Slayer

Super congrats on making it to SVR 4 its great news to share to all our members. Hoping all your other medical issues can benefit from this outcome. 

matt 



-- Edited by Matt Chris on Friday 2nd of May 2014 06:22:09 AM

__________________

"And in the end, the love you get is equal to the love you give"

59 year old Geno type A1, Early stage Cirrhotic, Enrolled in Abbvie Turquoise II 12 week trial in Jan 2013  Relapsed 4 weeks after EOT, Waiting to re-treat with better DAA combo



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mallani wrote:

Hi Dragon Slayer,

Welcome, and you are the first Forum member to try this combo.  If you look at the link, you will see Cohort 2 is the one for you.  As it is a Phase2 Trial, the numbers are small, and we have not been given the SVR 12 results. However, the figures are impressive, and the presence of the Q80K mutation doesn't seem an issue.

http://www.aidsmap.com/Simeprevir-sofosbuvir-produces-high-sustained-response-rates-for-hard-to-treat-patients-in-COSMOS-trial/page/2787623/

As a cirrhotic, I'd prefer the Ribavirin arm, and 24 weeks would be my preference. We will be interested to hear how you progress.

I'm impressed you had this off-label combo approved by Insurance.  I am not sure how this works in the USA.  Here, about 50% of the population have private insurance, and there are only 5 main players in this field.  Top-level cover for a couple is ~ A$5,000 per year, and patients have a choice of doctor, and the InsuranceCo is obliged to pay for any treatment prescribed.  It seems that, in the USA, the InsuranceCo has some discretion, or is it up to the Company. I'd appreciate any info.

Good luck with the SVR and the subsequent Rx for sarcoid. Hope the side-effects are minimal. Cheers.


 

Hello all,  Been away for a while working on the other battles. 

 

Had my 4 week EOT blood work on Monday 4/28/14.

I am happy to report that I am officially SVR 4   

 

All those on the new tx,  hang in there, its a great feeling.

 

It took about 21 days after tx  before the Ribavirin started to break lose.  I was still fatigue and had some shortness of breath. 

 

My Hemoglobin was 9 the last week of tx however, back to normal EOT day 18. It was 13.6

The Riba rashes on legs and under my eyes around my cheeks are just now starting to go away.

 

My liver doc wanted me to wait 90 days before I started treatment on Sarcoidosis but a CT Scan and chest Xray showed that the Sarciods tripled in growth in lungs, liver, sinus and tear ducts. 

My Autoimmune doc went with the attitude that we gave the liver a 23 day rest of no meds so lets get the party started on curing the Sarcoids. 

I had three 100 mg doses of Prednisone IV infusion and I am now on 40 mg of prednisone throughout the day.

There was a concern that Prednisone could increase the speed of HCV. The Olysio rep was concerned but the Sovaldi reps said that since the TMA shows negative at EOT, there would be nothing to replicate

so there would be nothing to speed up.

 

So far after 7 days of Prednisone, I can breath without coughing, I can hold my breath for 6 seconds, no shortness of breath and I am not fatigue.

AND today we got SVR 4. 

My Liver doc is smiling again.....

Life is getting GOOD....

 

Wishing same success for all my HCV friends.

 

 

 

 

 

 

 



-- Edited by Hep-C Dragon Slayer on Friday 2nd of May 2014 03:23:31 AM

__________________

GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14



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YES CARYN ... now thats what I wanted to hear.

Now I don't want to wait. I want to do this treatment and be done with it!

 



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Gracie

Hep C genotype 1A. Previously treated non responder in 2000 And Incevik triple therapy in 2014. 1,500,000 VL at start. 22 at week 4. NEGATIVE at week 8. Breakthrough at week 12 VL 100. Stopped treatment and waiting ...



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carny,

Wonderful response to your treatment.  I am sure you will be UND on your next draw.

Rockon, and keep us posted.



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49 yo. G1a prior tx 2005 with peginf and RIBA 12 weeks dc due to side effects. vl 7.8mm Current tx Sovaldi/Olysio 12 weeks started 2-21-2014,  UND at 4 weeks



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Thanks! I am happy with the results as well!  My VL being so high was crazy, but I was also sick at the time and had just had a kidney stone procedure done two days prior. That may have contributed to it, but who knows. Plus, I am not real sure where I was at once I actually started which was almost two months after.  I hope my thinking is not off on this, but with the viral load being 230 now at only one week, I would hope to be UND at 3 weeks. If that is the case, then I would still have 9 more weeks of meds circulating through my body to kill anything that could be hiding. Not real sure how it all works in regards to being UND early and SVR, but I just hope it all works out for all of us!! 

 



__________________

GT 1a, CT. Started Incivek 1/2013, vl 810 @ 2 week labs, 610 @ 4 week labs, 3000 @ 8 week labs, tx discontinued. 

04/07/2014 started tx with Sovaldi/Olysio/Riba. VL 39 mil. 1 week VL 230, 3 week VL 40, 5 weeks UND, EOT-UND-06/29/14 



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Hi Caryn,

All I can say is WOW!!! Such great news, thanks for sharing it with us. These new drugs are incredibly effective, it just can't be denied with early test results like that! Keep up the fight and get ready for your first UND next time around! Good luck biggrin

Tig



__________________

GT1A Int/Riba/Vic SOT: 05/23/13  EOT: 12/04/13=ETR  02/27/14=SVR12 04/30/14=SVR21...Cured!



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One week. Incredible numbers, Caryn. It doesn't seem to matter whether you start tx with a VL of 100k or 2 zillion, this stuff just eats it up. It's like the Pacman of drugs.  wink



__________________

65 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba 1/14 - 5/14 - VL ~4mil - 62 @ 4 wks -  UND @ 8 wks - UND @ EOT + 4

 



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One week labs are in.... vl 230, down from 37,000,000 on Feb 14th - well it's working, so i just need to get through the next 10.5 weeks and pray for SVR!



__________________

GT 1a, CT. Started Incivek 1/2013, vl 810 @ 2 week labs, 610 @ 4 week labs, 3000 @ 8 week labs, tx discontinued. 

04/07/2014 started tx with Sovaldi/Olysio/Riba. VL 39 mil. 1 week VL 230, 3 week VL 40, 5 weeks UND, EOT-UND-06/29/14 



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tiggietig wrote:

Thank you for the information.  I feel so stupid sometimes.  I have known that I have been hep C positive for 17 years and I have no idea how to tell what my genotype is or what the test results mean. I am going to call the doctor and see if I can get information on my last test results since I obviously don't know how to read the labcorp stuff.  :)  Would you mind telling me the most important things I need to ask my doctor?


 I had my labs printed out, brought them home then went searching on the internet.. I'm sure lots of folks here will take the time to spell it out. I swear Drs are just too busy to spend time with their patients to help them understand what's going on with them.



__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 



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Matt Chris wrote:

Hello Baron

Welcome to the forum, you have found a good place with caring people than can give insightful information for your journey during this treatment.

The new treatment will be far different for you this time, the treatment without Interferon will have be a lot less anxiety. Many here have been on your treatment and will be able to interact with you.

It would be helpful if we new a little more info about you, like Geno Type, and other basic info. You can insert them with your signature and they will appear at the bottom of the page.

matt       


 Hi Matt and Tig.  Thanks for your replies.  I'm 42 yrs old, genotype 1 (can't remember which one...brain fog), 23mil VL, ALT/AST 334/128 @ last test in Nov - before that normal for years.  I've had HCV since I was 16.  I last treated in '08.  I'll add this stuff to my sig.



__________________

42 yrs old, geno 1b, 23mil VL, ALT/AST 269/94 @ last test in Apr '14.  Had HCV since I was 16.  Last treated with peg+riba in '08, relapsed.  Start Sol/Oly/Riba 6/10.



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Hi PW,

Welcome to the forum! So glad you found us and decided to introduce yourself. There will be additional greetings to follow, it's a great bunch.

I'm sorry to hear you failed treatment previously, but can tell you (as you know) that the Sov/Oly combo is very effective! We have a number of members on this treatment and every one of them have gone undetectable quickly. It's truly a great combination.

if you would like, add your genotype and treatment protocol in your signature line. That can be found in the profile section of your account. It helps the membership know what you're on and where you are in the process. 

The Fibroscan (Fibrotest) is gaining in popularity and utilization. It will depend on whether your local treatment centers have the equipment. It's similar to the ultrasound but requires more specific probes and training to accomplish. I agree though, it certainly is easier than the biopsy! I've had my share of them and hope they are part of my past as well. They are extremely accurate though, so they will always have a place in the diagnostic process.

Keep us in the loop as you proceed with treatment and if you have any questions at all, either ask or use or search function. There is an abundance of good info available. Talk to you soon. Good luck!

Tig



__________________

GT1A Int/Riba/Vic SOT: 05/23/13  EOT: 12/04/13=ETR  02/27/14=SVR12 04/30/14=SVR21...Cured!



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Hello Baron

Welcome to the forum, you have found a good place with caring people than can give insightful information for your journey during this treatment.

The new treatment will be far different for you this time, the treatment without Interferon will have be a lot less anxiety. Many here have been on your treatment and will be able to interact with you.

It would be helpful if we new a little more info about you, like Geno Type, and other basic info. You can insert them with your signature and they will appear at the bottom of the page.

matt       



__________________

"And in the end, the love you get is equal to the love you give"

59 year old Geno type A1, Early stage Cirrhotic, Enrolled in Abbvie Turquoise II 12 week trial in Jan 2013  Relapsed 4 weeks after EOT, Waiting to re-treat with better DAA combo



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Hi everyone.  This is my first post in these forums.  I was directed here after doing a search on the Sovaldi-Olysio combination, which I've just contacted my gastro about.  I've treated twice before with peg and riba only.  I responded great, all signs pointed to SVR but relapsed immediately after stopping treatment.  I did not tolerate the meds well - my biggest problem was massive anxiety - but well enough to finish.  There was something about those drugs that made me crazy.  Anyway, I've been waiting patiently for better meds to come along and I'm hoping this combo is it.  I'm not cirrhotic yet to my knowledge, but I haven't had a biopsy in years.  I read in this thread about "FibroTest" and have asked my doctor for this test as well (I *hated* getting a direct biopsy).  My ALT/AST was in normal range up until about 4 months ago when it was suddenly very high.  I'm hoping to hear back from my doc on both the above questions soon and if he thinks its a good idea I may be starting treatment soon.  There seem to be some very knowledgeable people here so any tips/advice would be appreciated.

 

EDIT: Hep-C Dragon Slayer, I apologize for hijacking your thread.  I usually have better internet etiquette than that - apparently my head is somewhere else today. I'll start my own threads from here on our and/or stick to the topic. :)



-- Edited by patiently_waiting on Wednesday 16th of April 2014 07:00:14 PM

__________________

42 yrs old, geno 1b, 23mil VL, ALT/AST 269/94 @ last test in Apr '14.  Had HCV since I was 16.  Last treated with peg+riba in '08, relapsed.  Start Sol/Oly/Riba 6/10.



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tiggietig wrote:

I found out that I am genotype 1A with a viral load of almost 9 million.  I assume this is high?


Hi Laura, yes it is high, but the main thing is that you`re now on treatment and the next time you have a viral load test done I have no doubt that you`ll see a huge drop from your baseline number.  Genotype 1a is the most common of the genotypes in the US, and the Sovaldi/Olysio combo you`re on will give you an excellent chance of successfully clearing the virus.

Do you know when you`ll be getting your next viral load test done? 

Ps- By the way, you could write those details in your `signature` line so that we can see the information underneath all your posts.  That makes it easier for us to respond to you.  To do that, go to your User Details and select `Signature` in your Profile Box.



-- Edited by Cinnamon Girl on Monday 31st of March 2014 11:27:26 PM

__________________

Jill ~ Gen 3a, Pre tx VL approx 4 million

24wks Peg/Riba, Sep`10 - Mch `11... UND @ wk 4 and @ EOT.  SVR Nov `11

 

 



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I found out that I am genotype 1A with a viral load of almost 9 million.  I assume this is high?



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Tiggietig

VL 8 million genotype 1A

46 years old



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Thanks Maddie and Matt, I am looking forward to the next journey.

 

Gator Man,   DAY 84 TOMORROW......  Seems like yesterday was day 1 !!!

Heres to an early Happy EOT day to you.

Congrats     handshake.gif

 



__________________

GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14



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Congrats Dragon Slayer on reaching day 84 and EOT.   I am praying for SVR for all of us.  My EOT is next week.  It went pretty fast now that it is almost done.  I have such respect for all who treated for 48 weeks in the past with very challenging drugs. 

 



__________________

Dx. 2005...liver bx.: stg 2  gr 1. at that time  - GT 1a Contracted due to multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!!



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Hey Slayer
Great observations, the road we travel as forum members on treatment teaches us many important things as you have listed below. Are appreciation for the format of this forum and it's loving community of our Hep-C brothers and sisters is something that we truly recognized as special. 
Hep-C Dragon Slayer wrote:

 You cannot do this alone, no one can tell you exactly how you are going to feel except your fellow HCV friends.

Use this site to learn about every aspect of what is going to come at you but parse out the negatives and use the positives to your advantage. 

Change your thoughts and your own belief system for you are more powerful in your recovery then anyone will know.

Read about your liver and learn everything you can for once the HCV is cured, you will need to deal with the damage it caused.

_______________________________________________________________

Congrats Slayer on the end of 84 days of treatment, the next phase starts.

84 days of therapy brings 84 thousand thoughts of the journey and all that it can mean for your future. Thanks for contributing to the collective consciousness of our our forum

matt 



__________________

"And in the end, the love you get is equal to the love you give"

59 year old Geno type A1, Early stage Cirrhotic, Enrolled in Abbvie Turquoise II 12 week trial in Jan 2013  Relapsed 4 weeks after EOT, Waiting to re-treat with better DAA combo



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Hep-C Dragon Slayer wrote:

Thank you Tig,

I consider you and our other GURU's one of the Trail Blazers that helped science get us to the new meds. 

 I tip my hat to:

Anyone that went through 48 weeks of the old triple tx,

Anyone that relapsed and did this again,

Anyone that went through any of this tough disease and are now SVR,

Anyone that had to take those horrible Interferon shots,

 Thanks to all of you for helping the HCV world advance the opportunity to what we have today.


 I couldn't agree more Dragon Slayer. I consider myself to be your little Tx brother since I am 2 days behind you, day 84 is tomorrow for me.smile



__________________

Geno 1b, early cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4, 8, EOT, EOT + 4 weeks.

Gator Man SVR12, Dragon 0, Final Score.



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What are the results for previously treated incevik/boceprevir patients who failed treatment with this protocol? Is there a resistance because of the previous treatment that lowers the SVR chances?



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Gracie

Hep C genotype 1A. Previously treated non responder in 2000 And Incevik triple therapy in 2014. 1,500,000 VL at start. 22 at week 4. NEGATIVE at week 8. Breakthrough at week 12 VL 100. Stopped treatment and waiting ...



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84/84. Very nice, Dragon Slayer. Looking forward to seeing your SVR post when it happens. I know it was trying for you, but I found your attitude inspirational while you dealt with that 3rd refilll problem. Sincere congrats and best of luck with the sarcoidosis.

wayne



__________________

65 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba 1/14 - 5/14 - VL ~4mil - 62 @ 4 wks -  UND @ 8 wks - UND @ EOT + 4

 



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Hep-C Dragon Slayer wrote:

Well Today is DAY 84. 

Seems like yesterday that I took day 1 of the tx !!!!!!  

Tomorrow at 7 am we will have the EOT blood work and if it follows day 18 results I will still be UND.  Looking forward to reporting SVR in 5 weeks.

$2,100 a day in meds ($176,400), lots of mental anguish, lots of physical anguish, lots of personal life changes to cure this dragon.  I think most of you know, for me the last 28 days tasted the best !

For me, a 28 day waiting period and on to battle two, Sarcoidosis, them little granulomas took up a home in my liver and lungs but are soon to be evicted ! 

MY advice to all new HCV tx friends:

You cannot do this alone, no one can tell you exactly how you are going to feel except your fellow HCV friends.

Use this site to learn about every aspect of what is going to come at you but parse out the negatives and use the positives to your advantage. 

Change your thoughts and your own belief system for you are more powerful in your recovery then anyone will know.

Read about your liver and learn everything you can for once the HCV is cured, you will need to deal with the damage it caused.

And :

Stay on top of your prescription process. 

Use a specialty pharmacy from the beginning. When I had some issues in the 3rd refill, my specialty pharmacy helped defray some of the cost because they benefited from the first 2 fills. 

Good Luck in your FIGHT:

 


Well done, Dragon Slayer, congrats on finishing your treatment!   Thanks for posting such good advice, this is very useful for anyone just starting out who can benefit from your experience.

Wishing you all the best of luck with your EOT results!  smile



__________________

Jill ~ Gen 3a, Pre tx VL approx 4 million

24wks Peg/Riba, Sep`10 - Mch `11... UND @ wk 4 and @ EOT.  SVR Nov `11

 

 



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Hi Laura, I see you`ve just started on treatment with Sovaldi and Olysio a few days ago, so your doctor will have already done all the preliminary blood work needed.  Don`t worry about not understanding the blood tests at this point, it will all become clearer to you as you move along.  To begin with would be helpful if you could ask you doctor what genotype you have, what your viral load was before you started treatment, and what your liver enzymes were (ALT and AST).  As you`re doing the Sovaldi/Olysio combo you must have genotype 1 and it could be either 1a or 1b. When you have your next blood test done remember to ask for a copy of the results and then we can help you to understand what it all means.

In the meantime, try not to worry, you`re on very good drug combo and stand an excellent chance of success this time around.  Feel free to ask questions, that`s what we`re here for.  smile



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Jill ~ Gen 3a, Pre tx VL approx 4 million

24wks Peg/Riba, Sep`10 - Mch `11... UND @ wk 4 and @ EOT.  SVR Nov `11

 

 



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Thanks Dee Dee and Thanks Caryn.  

 

Caryn, you know I have to say it, stay on top of your new combo prescription.  Start with a specialty pharmacy if you can......

Good Luck.



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GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14



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Thank you Tig,

I consider you and our other GURU's one of the Trail Blazers that helped science get us to the new meds. 

 

I tip my hat to:

Anyone that went through 48 weeks of the old triple tx,

Anyone that relapsed and did this again,

Anyone that went through any of this tough disease and are now SVR,

Anyone that had to take those horrible Interferon shots,

 

Thanks to all of you for helping the HCV world advance the opportunity to what we have today.



__________________

GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14



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tiggietig, 

Can you also tell us if you are taking Interferon or Ribavirin or both ? 

You mention just starting the combo, when did you start your tx ?

Do you know why the doctor put you on the combo versus one or the other meds?

 



__________________

GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14



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There are many things worth knowing, but I would start with the basic lab tests. If you haven't had any recent blood work done, I would start there. You should request an appointment with your specialist and explain your history. Once that has been established, your doctor will order the appropriate pre screening tests and update any you've had. The tests you'll need are the LFT's (Liver Function Tests), they include two enzyme tests for the ALT and AST plus many additional indicators. We have plenty of info here if you use the search function, entering LFT tests. You'll also need a complete CBC with Differential and of course a HCV RNA PCR or better known as the "viral load" test with genotyping. That will provide the quantity of blood born virus particles in IU/ml and your genotype. There may be others, like a Thyroid function that may be required. Typically the first round of pre treatment blood tests are extensive but easy to do. They draw several tubes of blood and you're done. Sometimes they will ask you to fast beforehand, others do not. Your doctor or nurse will explain that to you. If you haven't had a biopsy or Fibroscan recently, that may be discussed as well. 

Use our search function at the top for more information as it comes to mind. We have some of the best real world information in one location! Let us know if you have any other questions.  Good luck!

Tig



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GT1A Int/Riba/Vic SOT: 05/23/13  EOT: 12/04/13=ETR  02/27/14=SVR12 04/30/14=SVR21...Cured!



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Thank you for the information.  I feel so stupid sometimes.  I have known that I have been hep C positive for 17 years and I have no idea how to tell what my genotype is or what the test results mean. I am going to call the doctor and see if I can get information on my last test results since I obviously don't know how to read the labcorp stuff.  :)  Would you mind telling me the most important things I need to ask my doctor?



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Tiggietig

VL 8 million genotype 1A

46 years old



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The Cobas TaqMan test is a RNA HCV test that is very sensitive and can test for viral quantity between 15 and 100 Million particles (IU/ml). If you have any detectable virus particles in that range, the test results will return as "HCV RNA detected" with a viral quantity mentioned. If there is no detectable viral quantity found it will come back as "HCV RNA undetected". The info you have posted shows no results, so this example simply indicates the test sensitivity.

Tig



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GT1A Int/Riba/Vic SOT: 05/23/13  EOT: 12/04/13=ETR  02/27/14=SVR12 04/30/14=SVR21...Cured!



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I don't understand test results to see where I am at just starting the Olysio and Sovaldi combo.  Are these the results and how do I decipher them?

The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL".


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Tiggietig

VL 8 million genotype 1A

46 years old



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Hi HCD,

It just doesn't seem possible that you're done. Your journey has been an interesting one to follow. You had something to deal with from start to finish just to reach this point. I commend you and all the rest for your steadfastness. You deserve the right to be proud of what you have accomplished and by all means you deserve a SVR! Good luck and we'll all be anxiously awaiting that EOT ETR (UND)!

Tig



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GT1A Int/Riba/Vic SOT: 05/23/13  EOT: 12/04/13=ETR  02/27/14=SVR12 04/30/14=SVR21...Cured!



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Good luck Dragon... I'll be waiting for your results! Keep up that battle cuz you will in the end!



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G1a prior tx 2005 with peg & RIBA -quit due to bad side effects. Follow up visit showed it was back. Current tx Olysio/sovaldi 673,000 vl on 3/21/14. May 1st undetected vl.


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My insurance company sent me letters of approval for this combination. I should be starting soon!  



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GT 1a, CT. Started Incivek 1/2013, vl 810 @ 2 week labs, 610 @ 4 week labs, 3000 @ 8 week labs, tx discontinued. 

04/07/2014 started tx with Sovaldi/Olysio/Riba. VL 39 mil. 1 week VL 230, 3 week VL 40, 5 weeks UND, EOT-UND-06/29/14 



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Well Today is DAY 84. 

Seems like yesterday that I took day 1 of the tx !!!!!!  

Tomorrow at 7 am we will have the EOT blood work and if it follows day 18 results I will still be UND.  Looking forward to reporting SVR in 5 weeks.

 

$2,100 a day in meds ($176,400), lots of mental anguish, lots of physical anguish, lots of personal life changes to cure this dragon.  I think most of you know, for me the last 28 days tasted the best !

 

For me, a 28 day waiting period and on to battle two, Sarcoidosis, them little granulomas took up a home in my liver and lungs but are soon to be evicted ! 

 

MY advice to all new HCV tx friends:

You cannot do this alone, no one can tell you exactly how you are going to feel except your fellow HCV friends.

Use this site to learn about every aspect of what is going to come at you but parse out the negatives and use the positives to your advantage. 

Change your thoughts and your own belief system for you are more powerful in your recovery then anyone will know.

Read about your liver and learn everything you can for once the HCV is cured, you will need to deal with the damage it caused.

 

And :

Stay on top of your prescription process. 

Use a specialty pharmacy from the beginning. When I had some issues in the 3rd refill, my specialty pharmacy helped defray some of the cost because they benefited from the first 2 fills. 

 

Good Luck in your FIGHT:

 

 

 



__________________

GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14



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Hi Fred! I failed triple therapy last year as well. I should be starting this combo in the next month or so. My doctor told me that if for some reason this fails, I can treat again with sovaldi and ledipasvir. Has anyone else asked this question and received this answer? I actually have quite a bit of faith in him, everything he has told me has been true. I just want to hear this from someone else!!! 



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GT 1a, CT. Started Incivek 1/2013, vl 810 @ 2 week labs, 610 @ 4 week labs, 3000 @ 8 week labs, tx discontinued. 

04/07/2014 started tx with Sovaldi/Olysio/Riba. VL 39 mil. 1 week VL 230, 3 week VL 40, 5 weeks UND, EOT-UND-06/29/14 



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I'm seeing my doc in 3 wks and he is considering this combo for me. I failed triple w/telepavair last spring. My VL was 152,000 at 4 wks. Started at 2.6mil. I have cirrhosis but feel fine and exercise. So my question is how many of you folks are Telepavair(Incivek) failures?

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Fred lambert


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Day 16 of Sovaldi/Olysio with no side effects. Waiting for my two week VL results. I hope to report good news!smile



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Geno 1b, early cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4, 8, EOT, EOT + 4 weeks.

Gator Man SVR12, Dragon 0, Final Score.



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Hi Renee,

Welcome and very sorry to hear you are having such a hard time of it.  SuziQ gave such great advice.  As far as BCBS goes, they are tough.  I assume your physician is a specialist in Hepatology?  Is your doctor directing the appeal to the right person or just an appeal department?  Your doctor should request that the appeal be reviewed by an expert in the field of Hep C, i.e. another Hepatologist.  Even if someone is a general MD, they may not approve a request if they don't have a deeper understanding of the virus and what it does to the body.  My hepatologist mentioned that if someone has stage 1 or 2, that insurance probably won't allow since severity not considered an imminent danger at these stages.  The fact that you have cryoglobulenemia adds to the urgency of treatment for you.  Has your doctor called your insurance company as well as sending written requests?  A call to the right person might be helpful.  You should send a letter describing how this disease is affecting you personally.  Sometimes this helps.  It has helped me in the past with other issues. 

 



__________________

Dx. 2005...liver bx.: stg 2  gr 1. at that time  - GT 1a Contracted due to multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!!



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Here is the financial help for Olysio.  Gilead has program for Sovaldi and Ribavirin has assistance called RibaPak.  Look under general section for a post on getting help as well.  That person only paid $12 for riba and Sovaldi.  Add the $25 for Olysio and your co-pay will only be $37.  Maybe your doctor can explain that other insurances are paying for the combo.  It looks like Olysio pays toward the overall cost thus reducing the insurance companies burden--but I am not sure.  Same with Sovaldi and riba.  I did a clinical trial so I am not sure how all this works, but it seems to be working for some.  Please let us know if it helps.

SuziQ 

OLYSIO: THERE ARE AFFORDABLE OPTIONS AVAILABLE.

 

There are several options for helping you reduce out-of-pocket costs of treatment, whether you have commercial insurance or government insurance, or you are uninsured. Find the option below that best applies to you.

I Have Commercial Insurance

  • The OLYSIO Savings Program may provide instant savings on your out-of-pocket medication costs for OLYSIO (simeprevir).
  • Eligible patients pay no more than $25 per fill, with a maximum savings of $25,000 for 3 fills (12-week supply) over the course of 1 year from initial use.
    • If you have Medicare or Medicaid, you may not be eligible for the OLYSIO Savings Program, but see the section below for more options.
  • Apply for the OLYSIO Savings Program  today.

I Have Government-Supported (Medicare, Medicaid, TRICARE) or Commercial Insurance Health Coverage.

  • If you still can't afford OLYSIO, the following foundation support may be available:
 
 

Other Resources

The Johnson & Johnson Patient Assistance Foundation, Inc  (JJPAF). is committed to providing access to medicines for uninsured patients who lack the financial resources to pay for their medicines. If you need OLYSIO and are uninsured and unable to pay for medicine, please call JJPAF at 1-800-652-6227 or visit www. JJPAF.org to see if you qualify for assistance.



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Geno 1A  Age 79 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR



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Hi there. Know I could start my own discussion but if others here already got approved for off label, I would love to find out how. I am on my 3rd appeal, well doc is, I am 1b but with cryoglobulenemia should treat ASAP and after talking to Ubiversity Rheum, Hep and Neuro docs all agree this is my best chance now. Blue C/S not so agreeable. So, any suggestions?
Peace and Blessings
Renee

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RE: Combo drug prescription of Sovaldi and Olysio


Thanks Tig, Cinnamon Girl and and Newmex.  I appreciate the best wishes.  I will definitely let you all know if sides are a problem.  Still waiting on results of Q80K mutation test.  Either way I was going to treat so here I go.  This is a great community.  Thank you all.      

Maddie



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Dx. 2005...liver bx.: stg 2  gr 1. at that time  - GT 1a Contracted due to multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!!

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