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Hep C Discussion Forum -> On Treatment -> Olysio sovaldi off label treatment
Post Info TOPIC: Olysio sovaldi off label treatment
Audreyanna


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RE: Olysio sovaldi off label treatment
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I just read that someone was not approved and that insurance companies are pulling back on the off label treatment. Since I have cirrhosis, I certainly hope they don't try to pull that.

good luck with your treatment!



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Audrey

 

55 y/o, GT 1A, 1.4 million UI, cirrhosis, low platelets, enlarged spleen, high LFTs. Failed tx x2. 12 weeks Sovaldi/Olysio. Undetected end of treatment and 4 weeks after EOT!
Barnacle


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I just started this treatment with ribavirin as well. Looks like many success stories on these new drugs are emerging.
One thing my spec nurse said that caused me concern was I may have been lucky to get this combo right now as insurance companies may be pulling back on approval of off-label Tx. I asked if that meant they could stop my Tx mid stream and she said no but they might not green light many more applications at least without good justifications. It seems right now just not wanting to take interferon is justification enough.

I noticed your comment about the cost of drugs in Egypt. I also heard somewhere that a very significant percent of their population has hep C from a nation wide inoculation program that was conducted with shared needles. If true that may account for the lower price of the drugs.

Good luck with your treatment I will be watching to hear about your success story.



-- Edited by Barnacle on Saturday 5th of April 2014 05:27:53 PM

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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 24wks UND = SVR!
Audreyanna


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Thanks for your reply. The nurse called and my info was submitted for approval last Monday and it could be ANOTHER 6 weeks for approval, making it 9 if that's the case. They are really busy down there I guess. I saw where the stock went way down because congress is questioning the pricing of one of the drugs, since they are offering it to Egypt, I think, for $600 instead of $84000. Hope that isn't going to make insurance companies wait. I'm not sure what pharmacy I'll be dealing with.

I don't know if I have that Q whatever it is. I think they said I probably do but they didn't test for it. They said this treatment should cure me. I hope so. It has been a stressful 17 years, knowing I have this virus. We all know that feeling. I can't imagine NOT worrying about it!

i will definitely remember to drink lots of water. I usually do. Water or weak, unsweetened green tea. Glad to hear its nothing like the combo which I did twice and couldn't walk out to the car without being exhausted and out of breath. Thought I was dying! 

Thanks for the upbeat response. You're right - lots of great people on here. So glad I found it. Take care and good luck!



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Audrey

 

55 y/o, GT 1A, 1.4 million UI, cirrhosis, low platelets, enlarged spleen, high LFTs. Failed tx x2. 12 weeks Sovaldi/Olysio. Undetected end of treatment and 4 weeks after EOT!
Dee Dee


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Audreyanna wrote:

Thanks for the answer. Yes, I guess that's why it's off label, not enough to approve it together, alone. Guess this waiting is getting to me. I'll think positive. Plus I haven't seen any posts except good ones. Thanks again! biggrin

 Hi Audrey, I have been on the treatment since the 21st of this month, I am also 55 and have the q80k thingy which I've read makes the treatment a little less successful. I refuse to get bummed out again. The folks in this forum are really fantastic and have brought me up from those low moments. Now as far as the treatment and the side effects.. Let me tell you! This treatment is not even close to the peg/rib that I suffered through for 7 months. i could do this  olysio/sovaldi standing on my head. I had one major headache the first morning then read that I should be drinking lots of water.. did that and not another one since! My energy level is even up! I am sure you'll be fine. I am going through a specialty pharmacy called Diplomat Pharmacy. They are wonderful and deal with your insurance for you. I got my meds quick! Aetna approved my meds quick as well. PPO coverage. I wish you luck! Keep us posted!



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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. EOT 12 weeks undetected!
Audreyanna


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Thanks for the answer. Yes, I guess that's why it's off label, not enough to approve it together, alone. Guess this waiting is getting to me. I'll think positive. Plus I haven't seen any posts except good ones. Thanks again! biggrin



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Audrey

 

55 y/o, GT 1A, 1.4 million UI, cirrhosis, low platelets, enlarged spleen, high LFTs. Failed tx x2. 12 weeks Sovaldi/Olysio. Undetected end of treatment and 4 weeks after EOT!
mallani


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Hi Audrey,

This off-label combo is too new for answers to your questions. All we have is the Cosmos Trial Cohort 2 results of whom 78% were Geno 1a, 47% had cirrhosis and 54% were prior non-responders. We're only talking about 14 patients in the 12 week Sovaldi/Olysio only . You'll be fine.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 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 +5 years

Malcolm
Audreyanna


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I'm still awaiting insurance approval to get on the new meds but am curious about something.

First, I want to say this board is a great thing and also it's so wonderful and encouraging seeing all these posts of undetectable virus after being diagnosed for 17 years and going thru the interferon/riba treatment twice. It's like a dream come true! A true cure finally. Didn't think I'd live to see it. Seriously, just a few weeks ago I figured I only had a couple years to live since I have had cirrhosis a long time and found out my iron was high. I knew I couldn't do interferon again because it really lowered my platelets and bloodwork was bad. Then I found out I am going to start this new miracle combo and am elated but still scared I might be one of the very few who don't clear the virus.  

Does anyone know what factors cause nonresponse? I have 1A am 55 and have had cirrhosis for at least 4 years but noticed a pic of me in 2006 with red palms so could be longer. Just curious.

Thanks for any input.



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Audrey

 

55 y/o, GT 1A, 1.4 million UI, cirrhosis, low platelets, enlarged spleen, high LFTs. Failed tx x2. 12 weeks Sovaldi/Olysio. Undetected end of treatment and 4 weeks after EOT!
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