Hepatitis Forums
Hepatitis C Main Forums => Considering Hepatitis C Treatment => Topic started by: one more time on February 13, 2016, 02:07:49 pm
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Ok here I go again, been through interferon and Riba; Solvaldi and Riba, now Daklinza and Solvaldi.
The question is: Riba or no? The previous treatments have left me with hearing loss and tinnitus. Geno 3, fibrous score 2/3, viral load around 2 million. The data says riba yes, but if I was treatment naive it would be no. Last treatment was 2 years ago, anyone out there skip the Riba and what was the outcome?
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Hi one more time,
I haven't skipped the Riba, but did discuss whether still needed with my specialist on Thursday as I am now at the 12 week point in Tx. My question to him was; Given some of the latest trial data (http://fixhepc.com/media/kunena/attachments/391/CCO.pdf) was there an opportunity to drop the Riba for the last 12 weeks?
His view was that due to my previous exposure to Dac and my F4 status it would add a couple of percent advantage to me to keep going with riba for the full 24 weeks.
You don't state whether your Tx will be 12 or 24 weeks. If 12 weeks then riba would seem indicated but for 24 weeks if you haven't had exposure to Dac and are only F2/3 then the above trial, being the largest yet in this area seems to show little advantage but please discuss with your own specialist as he will have better knowledge of your situation.
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If your doctor thinks you need to take ribavirin I would take the ribavirin. Just discuss your concerns to see if you have any options
Good luck
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Thanks All
The insurance company must have read that as well. They have approved a 12 week TX, without Riba, My doctor has appealed and wants 24 with Riba. I have Riba on hand, so currently I'm set for a 12 week TX.
The issue with Riba is the Ototoxicity question. Don't know if the Riba caused my hearing issues or the interferon? Guess Ill never know?
I'm going with the Riba for the 12 weeks and watch the hearing /tinnitus carefully. Thanks for the support I will keep posting and let you know, I still think the medical community ( Ive been to 3 major institutions throughout the US, I travel) is sticking to a drug they know has little impact to the virus itself. Go Gillead go!
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When was the last time your physician did the fibrosis scoring and what method did he use (Liver biopsy, Fibroscan, APRI, Fibrosure)?
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HEPful Guy,
Doctor used Fibrosure? Did it a couple weeks before I started TX. My last biopsy 2 plus years ago showed same score? He also did a CT with contrast , all looked ok he said. So I'm still confused looking at Alley studies, 12 or 24 weeks? with without Riba, since my Solvaldi -Riba treatment was interrupted twice by our friends at the insurance companies and I only have been approved for 12 weeks so far, I guess they consider it patient naive? even though I couldn't go beyond 7 weeks on interferon as well.
contracted (1980) ???
diagnosed in 2007
interferon -riba -2010 (7weeks)
solvaldi-riba -2014 (24 weeks, interrupted twice, 10 days each time)
solvaldi-dakliza -riba ( 12 weeks just started)
F2/F3
1.7 million V/L
AST 73
ALT 110
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OMT,
It certainly sounds like your insurance is considering you naive, possibly in more ways than one. AASLD recommendations would seem to indicate 24 weeks with or without ribavirin for you. I'm not a doctor but with 24 weeks for F2/3 & VL 1.7M I doubt if the riba would make a great deal of difference. You and your doctor need to present an appeal that gets you the correct 24 weeks Tx and it may be advisable to work with a patient advocate to give you the best chance of success.
However if you have already started Tx then you have limited time so if your appeal is unsuccessful or not going to be completed by the end of your current 12 week supply of meds, and you can afford it, you may want to consider the possibility of sourcing an extra 12 weeks of generic Sof/Dac to arrive just in time to continue Tx for 24 weeks. That is now possible and should cost you $1050 - $1400 these days. There are a number of threads by various people here regarding their experiences of doing so including Coach Mike who did the combination generic/insurance thing except he started with generics prior to his successful appeal.
Lucinda Porter who is a member here also recently wrote a personal article with her thoughts on generics which you can read here https://www.hepmag.com/article/generic-hepatitis-c-drugs
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OMT, because you're sovaldi experienced you gotta do the ribavirin for the booster, there is really no way around it. Your insurance definitely isn't looking at you as a treatment naive patient, they just haven't updated their clinical policy to reflect the most up to date recommendations of the AASLD for your genotype. If your physician's office knows how to write/submit a decent appeal letter they should have no problem getting it extended to the 24 weeks of treatment. Unfortunately this does also boil down to what insurance company you have as well. From my experience a majority of insurance companies genuinely read the appeal letters and then some of them only search the letter to see if there is new clinical data supplied on the patient to meet their stringent criteria for approval. What insurance do you have?
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Don't know if the Riba caused my hearing issues or the interferon? Guess Ill never know?
I'm no doctor, specialist or even RN, but working in a medical facility, I had the chance to talk to several patients who were undergoing peg-interfuron and ribavirin treatment.
One had developed a hole in their ear drum that was attributed to the interferon. Another was under-going heart surgery for a hole forming somewhere in their heart also attributed to the interferon.
The only thing Ive heard about Ribavirin is the possibility of acquiring anemia, sometimes severe - which happened to me, but I continued with it anyway, to some degree for the full 24 weeks for GT3a in combination with Sovaldi.
Given these live testamonies from patients, I would assume the interferon was the culprit.
Let's say I and these people are clueless - your choice boils down to what's best for your liver weighed against whats best for your ears.
Personally, since I can live without an ear, Id err on the side of whats best for my liver.
Best wishes, no matter what your choice. Some things simply must boil down to the patient's choice.