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Hep C Discussion Forum -> On Treatment -> Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
Post Info TOPIC: Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
Hep-C Dragon Slayer


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RE: Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
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Not to confuse you because I get confused on what it is, so I will leave the Q80M question for the Guru's to answer. 

 

All I do know is that it can be included in HCV patients and it is screened for differently.  I am lucky not to have this so I did not dig in too deep on it.



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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
Hep-C Dragon Slayer


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Just read your second post about not taking Riba. 

My doctor told me yesterday that her group of gastro docs are going to start to leave the Riba out of tx for G1 patients that are on Interferon.

I could not take Interferon due to Sarcoid issues so they had me take Riba

Tw G1 folks in her practice started off-label tx Jan 17 without Riba and they were UND on day 21.  They also have stage 3 and 4 cirrhosis, non fatty non alcohol biopsy's.



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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
Tornado


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TY



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Tim Geno 1A, null responder x 4, mild cirrhosis, contracted 1974 blood transfusion currently on Sovaldi/Olysio
Tornado


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What is Q80K ?



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Tim Geno 1A, null responder x 4, mild cirrhosis, contracted 1974 blood transfusion currently on Sovaldi/Olysio
Hep-C Dragon Slayer


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Congrats Tornado,   I think You will be pleased with the outcome this time.

I just finished day 41 of Sovaldi, Olysio and Riba.  UND day 20 and day 30.  Next TMA test this Wednesday expecting same UND results.

No outstanding sx to mentions, everyone has been a little different on these new drugs. 

Good luck with your tx.

 



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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
Tornado


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Cool, any news as to the success rate with Sovaldi and Olysio without ribavirin? 



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Tim Geno 1A, null responder x 4, mild cirrhosis, contracted 1974 blood transfusion currently on Sovaldi/Olysio
Tornado


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I just took my first doses of Sovaldi 400 mg once a day and Olysio 150 mg once a day. I am genotype 1a non-responder x 3,1998- peginterferon/ ribavirin, 1999-ISIS trial, 2010-peginterferon/ ribavirin/ boceprevir. Keeping my fingers crossed. I was initially rejected by UMR insurance, then doctor sent labs and history and they approved it Thursday and I got the meds today.



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Tim Geno 1A, null responder x 4, mild cirrhosis, contracted 1974 blood transfusion currently on Sovaldi/Olysio
maddie


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Happy to hear you will be trying these new meds.  The side effects have been virtually non-existent for me on the two drug protocol.  Much luck to you!



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
Cinnamon Girl


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Caryn wrote:

I saw my doctor yesterday and should start treatment with simeprevir, sovaldi and ribavirin in the next month or so. Round 2!  I hope it works this time!

Hi again Caryn, that`s great news, really pleased for you.  It will be a lot easier for you this time compared to being on the incivek triple, and you should do well on this combo.  Wishing you all the best, keep us posted!  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Caryn


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I saw my doctor yesterday and should start treatment with simeprevir, sovaldi and ribavirin in the next month or so. Round 2!  I hope it works this time!



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
darkstar


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Gator, just read the article.  I think the point they make is that the inflammation they describe was thought to be associated with fibrosis/cirrhosis but 37/38 patients had regression in spite of this.  My interpretation is that there are many forms of inflammation and this is only one.

 

Glad you don't have symptoms.  I thought I was just getting older until I started treatment.  Boy was I wrong!



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Gator Man


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Darkstar, the specific reference regarding portal inflammation regression after SVR is found in the abstract at this link, http://www.ncbi.nlm.nih.gov/pubmed/22271347. The conclusion states as follows: "Cirrhosis regression and decreased fibrosis are frequently observed among HCV patients with cirrhosis with an SVR. Despite ductular proliferation vanishing and lobular zonation restoration, portal inflammation and sinusoidal capillarization may not regress after viral eradication." I would comment that a:) I have not read the study and b:) I am not a physician or have medical training. If you do a google search, there are other articles that support your statement that  "[l]ivers may be able to get better, not normal, but still improvement." I think the outlook for those of us with cirrhosis/fibrosis is significantly brighter than it has been even in the recent past.

Since I have been relatively asymptomatic of cirrhosis symptoms prior to Tx, my "physical" improvement in the last few weeks is probably as much psychological as anything else, even with improved LFTs.  Simply stated, my new found optimism has added a "spring to my step." which at this stage may be as significant to me as actual physical changes. Of course I only speak of my own experience and am glad you have noted positive changes from inflammation reduction.

I think given new medical research, there is reason to hope that a successful Tx outcome and SVR may significantly diminish, if not foreclose, the physical effects of advanced liver disease.

 



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Geno 1b, compensated 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 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
maddie


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Thanks for your info and encouragement Darkstar.  Don't get me wrong, I am excited to have the VL where it is, it's just that a few people posted who achieved UND at 2 weeks, so I was hoping to attain that as well.  Since this combination of meds is so new, I don't know what the norm should be with this protocol. Believe me I am very happy to be having this response. 

 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
darkstar


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Maddie, down to 70?!?!  That is fantastic given where you started and exceeds 3 logs in two weeks.  As far as I know, that is unheard of with standard triple therapy.  As far as Q80K goes, I have it as well.  That is one of the many reasons for two drugs.

 

Gator, the comment you made about inflammation is simply not correct.  AFP rise is certainly related to at least in part hepatocellular inflammation.  In my own case the drop from 200+ to about 20 in 6 weeks.  In addition, I believe that my own improvement in overall sense of well being is related to improvement in inflammation. To be clear, this is also related to comments that have been made by my treating physician.



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maddie


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Thank you so much Gator Man.  Have been a bit worried because I have that darn Q80K.  The positive thoughts from you and others here are so encouraging.  smile



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
Gator Man


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Great news maddie!biggrin UND is around the corner.



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Geno 1b, compensated 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 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
OldenSlow


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Gator Man wrote:

....   I also feel better physically, in part because of improved diet and exercise for the last few years, but also have increasing confidence for good health because of Tx results, which plays a major role as well.  I try to keep in mind that it is pointless to rid myself of HCV if I end up acquiring some other disease (e.g. diabetes, heart disease, etc.) because of poor lifestyle habits. Being optimistic about getting to SVR in the near future makes the task of taking better care of my health easier to follow.

 Well said, Gator!



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
maddie


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Fantastic news, Darkstar!  Finally got my 2 wk.bloods.  VL is 70 down from 1.9 M. Headed in right direction but not yet UND. 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
Gator Man


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Congratulations darkstar. My next VL check is at 8 weeks (March 5th) and hope to follow in your footsteps.

My doctor doesn't want to discuss post EOT issues just yet. He has alluded to the changing landscape regarding the progression of liver disease for those of us with severe fibrosis/compensated cirrhosis, but doesn't want to get the cart before the horse. He did say enough to indicate that optimism is warranted. There are several articles/abstracts on the internet that show overall decrease in cirrhosis/fibrosis for HCV patients that have achieved SVR, although portal inflammation and other issues may not resolve after Tx.

I also feel better physically, in part because of improved diet and exercise for the last few years, but also have increasing confidence for good health because of Tx results, which plays a major role as well.  I try to keep in mind that it is pointless to rid myself of HCV if I end up acquiring some other disease (e.g. diabetes, heart disease, etc.) because of poor lifestyle habits. Being optimistic about getting to SVR in the near future makes the task of taking better care of my health easier to follow.



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Geno 1b, compensated 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 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
darkstar


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Wayne and Mark, you are very likely to be there soon.  After being infected for almost 40 years and having gone through many treatments that only worked to make me feel bad, it is hard to even describe the emotions.  The best part is that the old dogma that cirrhosis/fibrosis is irreversible has started to change.  Livers may be able to get better, not normal, but still improvement.The AASLD published their last guidelines for HCV G1 in 2011.  I just read that they are expected to come up with new guidelines early this year.  Based on the discussions I have had with my doctor, it sounds like the combination of active drugs with minimal side effects is practice changing.  I for one, have gone from not being very optimistic about my future to tremendous optimism which at least in part is also related to the fact that I feel so much better physically.



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OldenSlow


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darkstar wrote:

... In my case, my AFP started at over 200 and now is down to about 20.  

More good news.  Mine's been steadily climbing for some time.  Somewhere in the 50's at last check, I believe.  Would be very nice to see that drop.



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
darkstar


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By the way, as you all know, alpha fetoprotein can be a marker of hepatocellular carcinoma.  It is also elevated during liver inflammation.  In my case, my AFP started at over 200 and now is down to about 20.  And yes, in anticipation of the obvious question, I had multiple scans to prove that there was not a cancer.



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OldenSlow


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That's great news, Bob! Such rapid response. Wow! I'm a bit behind you with VL check upcoming. I'm excited (nervous? anxious? optimistic? giddy? worried?). All of the above, probably. Interesting the emotional responses the waiting provokes.  Truly happy you are responding so well.

Keep it rolling!

Wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
Mark Y


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darkstar wrote:

My week 6 results for simeprivir/sofosbuvir just returned.  Indetectable at 2, 4 and now 6 weeks!

 This is great news, congratulations! I'm starting the same combo tomorrow and can only hope for the same results.



__________________

55 yr old male. GT 1a. Diagnosed in 1985. Stopped pega/riba in 2005 due to side effects. Started Solvaldi/Olysio 2/14/14. VL 3,700,000. 2/21/14 VL 244. 3/07/14 VL Undetected.
Tig


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Darkstar,

Congratulations on the GREAT news!!!

Tig

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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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darkstar


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My week 6 results for simeprivir/sofosbuvir just returned.  Indetectable at 2, 4 and now 6 weeks!



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Mark Y


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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.  



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55 yr old male. GT 1a. Diagnosed in 1985. Stopped pega/riba in 2005 due to side effects. Started Solvaldi/Olysio 2/14/14. VL 3,700,000. 2/21/14 VL 244. 3/07/14 VL Undetected.
Cinnamon Girl


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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!  smile

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Tig


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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

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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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senderton


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What insurance companies are approving off-label Olysio/Sovaldi combination
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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. 



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Gator Man


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Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
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I will happily stay a day behind in Tx Dragon Slayer, so long as we both finish UND!biggrin

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

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Geno 1b, compensated 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 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
OldenSlow


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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



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
Hep-C Dragon Slayer


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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.....



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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
Hep-C Dragon Slayer


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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. 



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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
OldenSlow


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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



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
maddie


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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. smile  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.   



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
Gator Man


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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

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Geno 1b, compensated 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 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
pierre


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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!



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HCV 1b -- detected 2011 -- pre-cirrhotic -- vl has varied from 3million to 150thou-- first tx Sovaldi/Olysio started 2.6.14. finished 4.28.14. Since 4 weeks post-tx I have been UND with liver functions back to normal. SVR at 12 weeks post-tx.
Mark Y


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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!



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55 yr old male. GT 1a. Diagnosed in 1985. Stopped pega/riba in 2005 due to side effects. Started Solvaldi/Olysio 2/14/14. VL 3,700,000. 2/21/14 VL 244. 3/07/14 VL Undetected.
maddie


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So happy for you, GatorMan!  Great news for you and your wife.

 

 

 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
Gator Man


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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!biggrin  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

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Geno 1b, compensated 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 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
maddie


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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...smile  From your lips to God's ears....  Maddie 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
Gator Man


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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 ...



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Geno 1b, compensated 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 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
OldenSlow


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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,   smile

Wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
maddie


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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.



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
Michaele


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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 



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maddie


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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? 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
Michaele


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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



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Tig


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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



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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maddie


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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. 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a 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!!!..SVR 24 :-)
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