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Author Topic: Need help in making my argument at Dr's office  (Read 7986 times)

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Offline lolacme

  • Member
  • Posts: 55
Need help in making my argument at Dr's office
« on: July 01, 2015, 12:16:11 pm »
Hello folks,
I am an F3 Harvoni patient. I saw on here where people with F2 and F3 are on Harvoni plus Ribivirin. I also read some studies about how Harvoni needs the Ribavirin in advanced liver disease. I have had treatment 2 times before and decided I wanted to add Ribavirin as well. I spoke to my Dr. last week and we agreed it was okay to start Ribavirin which I already had a prescription for when we thought my insurance company was only going to approve Viekira Pak. So  10 days into my Harvoni I started Ribavirn. My Dr. did not put this in my notes. Now a woman at my MD office is saying I do not meet protocol for the Ribavirin and that I should not be taking it and won't sign off on my RX renewal with my speciality pharmacy.  She said she has never heard of taking Ribavirin with Harvoni. If one goes by the Harvoni literature I do not necessarily have to have the Ribavirin unless I am cirrhotic.  I want to keep the Ribavirin because my liver disease is advanced and I feel it increases my chances for an SVR. I have seen Harvoni failures on here where they had Harvoni alone. My thoughts are if cirrhotic patients need the ribavirin because Hep C is harder to treat in those patients than it can do nothing but help an F3'r like me.  What arguments can I give for keeping it if this lady at the Dr.s office trys to see to it that my Doc stops the Ribivirin. My  doc is so busy I am afraid he will not even remember out conversation since he did not put it in his notes. Please help.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline amy1662

  • Member
  • Posts: 41
Re: Need help in making my argument at Dr's office
« Reply #1 on: July 05, 2015, 12:52:44 pm »
Who is this lady and why does she have to sign off on your medication? Your doctor is the one who has the say on what you take. It is well known in the medical community that ribavirin can be taken with Harvoni. I would question this ladys knowledge on hep c treatment. There are many people that are taking ribavirin and Harvoni together. I would talk to your doctor I am sure he can straighten it out. I went through the twelve week treatment of Harvoni and am hep c free. doctor says I am cured. I did not take Ribavirin but know people who have. I am between stage one and two so that might be why my doctor only prescribed Harvoni. I understand how you feel and believe that there is nothing wrong with trying to do all you can to make sure you achieve SVR. Keep fighting get all the documentation you can and demand answers. I garrantee you will come out on top. Sorry you have to go through this, try not to worry Harvoni is some strong medicine, you are going to win this battle. Hope everything works out for you  :)

Offline dragonslayer

  • Member
  • Posts: 873
Re: Need help in making my argument at Dr's office
« Reply #2 on: July 05, 2015, 04:24:43 pm »
If you read the Gilead prescribing doc, in both the Ion-1 and Ion-2 trials, Ribavirin was among the study arms and showed no impact on SVR in both cirrhotics and non cirrhotics.   Ive seen it used very infrequently in the case of advanced cirrhosis where its a  throw everything at it approach since failure at that point is not an option.   But in the vast majority of cases, ribavirin would likely not be appropriate.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Mike

  • Member
  • Posts: 999
Re: Need help in making my argument at Dr's office
« Reply #3 on: July 05, 2015, 05:52:19 pm »
Paul makes a good point. Ribavirin is sometimes used when advanced liver disease is present or when for folks who failed Sovaldi/Olysio combination.

Talk to your doctor and have him/her explain why Ribavirin is not appropriate for your clinical picture.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline lolacme

  • Member
  • Posts: 55
Re: Need help in making my argument at Dr's office
« Reply #4 on: July 05, 2015, 06:27:14 pm »
Hey Dragonslayer. I think the research contradicts itself. I read the Ion studies as well. But then, I read another study published on this sight regarding Harvoni and ribavirin in cirrhotic patients. It said that 12 weeks of Harvoni plus Ribavirin is almost as effective as 24 weeks on Harvoni(96% versus 97%). Why would this be so if the ribavirin has  no effect. The ribavirin must do something. I know I am only F3 and literature says I don't need ribavirin. Maybe its overkill in my case...maybe its not. The literature says with cirrhotics should be given ribavirin.. It does not indicate whether it means compensated or decompensated- it just says cirrhosis and that ribavirin should be given with the Harvoni. Why give it- if the studies show it makes no difference. Like I said, I think the studies and the literature contradict themselves.  Thank you for your feedback. It is nice to get another perspective besides my own head.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline dragonslayer

  • Member
  • Posts: 873
Re: Need help in making my argument at Dr's office
« Reply #5 on: July 05, 2015, 08:02:25 pm »
Hey Dragonslayer. I think the research contradicts itself. I read the Ion studies as well. But then, I read another study published on this sight regarding Harvoni and ribavirin in cirrhotic patients. It said that 12 weeks of Harvoni plus Ribavirin is almost as effective as 24 weeks on Harvoni(96% versus 97%). Why would this be so if the ribavirin has  no effect. The ribavirin must do something. I know I am only F3 and literature says I don't need ribavirin. Maybe its overkill in my case...maybe its not. The literature says with cirrhotics should be given ribavirin.. It does not indicate whether it means compensated or decompensated- it just says cirrhosis and that ribavirin should be given with the Harvoni. Why give it- if the studies show it makes no difference. Like I said, I think the studies and the literature contradict themselves.  Thank you for your feedback. It is nice to get another perspective besides my own head.

Point taken.. My understanding was that Riba can shorten the duration from 24 wks to 12 wks for cirrhotics.   Perhaps the reason we probably dont see the data in the Ion trials is that although Riba was given, its impacts were compared with the arms not given Riba for the same duration.  Ie, it was found in both the 12 and 24 wk studies that Riba didnt impact SVR...  But perhaps if they had compared the 12 wk Riba arm with the 24 wk Non Riba arm, the results would have been similar.  One of the ways Riba seems to be being used is to shorten treatment to appease the insurers.  I dont know the cost of Riba relative to Harvoni, but Im guessing its less.   

>>The literature says with cirrhotics should be given ribavirin.<<

Not all the literature... Gilead doesnt seem to support this in anything Ive read.  If you can find that study reference link to which you refer, kindly post it in this thread; I want to learn more about it...

Thanks.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline lolacme

  • Member
  • Posts: 55
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline dragonslayer

  • Member
  • Posts: 873
Re: Need help in making my argument at Dr's office
« Reply #7 on: July 05, 2015, 11:30:14 pm »
Thanks for the link... Looks interesting.  The success numbers still seem to apply mostly to those with cirrhosis.  If your F3 was scored more than a few years ago, you might be able to prevail with another fibrosis test or biopsy.  Id bring this study to the attention of your doctor's office just in case.  Best of luck...
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

 


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