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Avatar universal

Start treatment and have surgery

My husband is seeing doc next week to hopefully start treatment with the newly approved Sofo with RBV and INF. he has issues with his shoulder and thinks he can get surgery for that while starting this treatment. I do not know yet if his doc will prescribe this regimen and even if his insurance will cover it. (Express scripts). From all I have read, for his Hep C genotype 1a, he is going to have to get the INF regardless. Sooooo.....what do you all think. I am so worried about him, when he had is liver biopsy it said he was at a 3/4 ?? Not sure what that means.he has a lot of sensitivity in the area of his liver, and to me, has also appears to have fluid buildup. He looks 8 months pregnant to me, and the way his stomach bulges, i can't believe it is just fat. If it were you would you attempt shoulder surgery while on treatment. When he had his other shoulder done a few years ago, it was a living hell....please please ....tell me what you think. I can't stand to see him in all this pain. He also has much fatigue and sleepless nights and joint pain in general, I try to watch how much Advil he takes, because I know that is not good for the liver.
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Avatar universal
Yep! I should find out any day if I'm positive with Q80K.
However....I've decided to ask my hep dr to let me treat regardless. Results show a 15/20% less effectiveness with Solvadi/Olysio if positive with Q80K but as far as I can see from other (AbbVie) trials that makes them pretty much comparable. I'm dead set on not treating with RIBA much less inf.
I have appt tomorrow so will see what he says...
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Avatar universal
Did your gastro test you for the presence of
virus with the NS3 Q80K polymorphism? Alternative therapy should be considered for patients infected with HCV genotype 1a containing the Q80K polymorphism.
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Avatar universal
I apologize if I've missed something here....I'm new to the hep world having only been diagnosed 3 months ago. I'm Gt 1a with cirrhosis(F4).  Trial results show Sovaldi(sofosbuvir) and Olysio(simeprevir) withOUT inf and even RIBA have same if not better results.

My hep dr has agreed to write 'off label' for treatment with these two drugs. I just don't know why any doctor would prescribe inf at this point...again I'm not an expert. Can only share my experience.

"In a pooled analysis of the 12-week treatment arms in cohorts 1 and 2, SVR4 was achieved among patients treated with simeprevir and sofosbuvir with or without ribavirin, in 96 percent of patients with IL28B non-CC genotype, 91 and 100 percent of patients with a METAVIR score of F4, respectively, and 95 percent of prior null responders.

All patients who completed treatment were HCV RNA undetectable at end of treatment and there were no viral breakthroughs in either cohort 1 or 2. The COSMOS study interim results show no benefit from adding ribavirin to simeprevir and sofosbuvir in this difficult to treat groups of hepatitis C patients and that 12 week treatment may confer similar clinical benefit to 24 week treatment. - See more at: http://hepatitiscnewdrugresearch.com/sofosbuvirgs7977simeprevirtmc435.html#sthash.WXRMZpK3.dpuf"
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Avatar universal
Thank you, ...I have to remember...."right foot, left foot, breathe"....
Helpful - 0
Avatar universal
Gilead is the only one that can truly answer questions regarding their coupon coverage based on your insurance. It does appear that WyoSue will still need to pay up to 10 percent of the cost (still $$$$), but maybe not?! Good Luck with coverage WyoSue.

Faithdove, hang in there...we can only plan and deal with what we can plan and deal with...so...we plan...and deal with it...one day at a time...
Helpful - 0
Avatar universal
So I am a nervous wreak over my husband's upcoming treatment. I read another post on this site about side effects during and after treatment. Neuropathy, was one of them. I am trying to remain positive but am such a worry wart. My hubby got up this morning and then went back to bed, I am sitting here thinking too much. I really hope he gets his energy back once we banish this Hep C, this fatigue is really impacting his quality of life. Thank you for listening.
Helpful - 0
Avatar universal
One more thing I just thought of, something has to give with getting these drugs to patients faster and not have insurance holding up treatment.... waiting 6 or more months to get them on their formulary. Many folks needing treatment are baby boomers, so doesn't it behoove the insurance including Medicare, to get these type of meds available instead of having people end up having to deal with further issues from lack of treatment. Boy am I learning a lot and it only makes me madder!!  
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