Non-responive to Solvaldi/Olysio after 12 weeks

[Abbas Girl]

I started my treatment with Solvaldi and Olysio in June of 2014.  End of July my viral load had gone from 27 million to 0!  I was very excited.  At the end of 12 weeks (in September 2014) I was told I had to have a sustained viral load of 0 for 12 additional weeks to be considered cured.  My test was December 19, 2014 and got my results a couple of weeks ago.  My viral load is back to 3.7 million.  My doctors have chosen to try Harvoni and Ribaviron.  I should start it in the next couple of weeks.  Has anyone else experienced this?  Being a non responder is disheartening but I still trust because I was told 95% of people with Geno Type 1A respond.  I still have faith God can heal me, but I just wondered if anyone else has been down this path?

[sunrise]

Hi Abbas
     First let me say I'm sorry you relapsed, but remember you gave your liver a well needed break.Soon you can resume with a new treatment with a much lower vl. Your starting vl. was pretty high, I'm surprised you were UD so early in tx. They didn't do a 4 week post tx. test? I was also S/O tx. and just took my 4 week post tx. bloodwork. I am very nervous about Iit. I've read that if you are to relapse it usually happens between 4 and 12 weeks. Take a deep breath a warm bath and know you will beat this. Just might take another try. Stay strong.... Blessings Sunrise

[badbradley]

Abbas Girl,
    Saddened to hear your news. Wish you the best on your 3rd round of treatment. If you don't mind, could I ask about your liver condition. It seems cirrhosis is the most common denominator with relapse on 12 wk regimens of Sovaldi/Olysio. For cirrhotic patients the 12wk treatment plan was recently revised to a 24wk plan. Good luck and I hope this is your last treatment!
    Brad

[Lynn K]

Hi Abbas

I treated with Sovaldi Olysio in March to June and was found to have relapsed in September. In November the treatment recommendation for patients with cirrhosis was changed from 12 to 24 weeks of Sol/ Oly. Also I did a lot of research for patients like myself as a previous null responder with cirrhosis the odds for 12 weeks were more like 85% in the trials and commonly the real world results may be somewhat lower.

I have also read the results with Harvoni are about 99% and adding riba is just throwing everything we have at the problem so yuor and my odds of beating this thing this round are very good.

I started Harvoni 11/18 and after recent discussions with my doctor we added riba this last Tuesday so starting with week 10. My treatment will consist of 9 weeks of Harvoni and 15 weeks of Harvoni Riba and I will be done May 4th. With 12 week post in late July.

I was undetected again at week 4 just hoping I stay that way this time.

Keep in touch we are walking this path together my friend

Good luck to you

[Abbas Girl]

Thank you all for your responses!  I did talk with my doctor this morning and my insurance will not pay for the Harvoni at this time.  He wants to wait and see some studies before we go back into treatment because of the new meds approved in December and because of the length of time recommended to take the different meds.  My liver is a F3 on the Fibroscan and there is no cirrhosis at this time, so his decision to wait is based on this factor. 

I am trusting God to carry me through this trial again and I know I have healing coming.  I will hear something in the next couple of months when some studies have been released (around April) this year.  Praying for all of you that you have a SVL of 0 when you are tested.  I was shocked at 4 weeks I was undetectable, but also very thankful.  They didn't do a 4 week post test simply because they said if the monster comes back it will show up in 4 weeks, but we might as well wait for the 12 weeks and I agreed (lost of money to do the testing!). 

Yes, we are all walking this road together and I am so thankful for others who understand!

[Lynn K]

There has been a small study of people who did Sovaldi  Olysio who relapsed. I was just looking at your title non responsive freaks out your insurance you did rspond as did I but we both relapsed big difference.

Antway the 2 groups of 14 so 28 relapsere treated with harvoni and all of them made it to  SVR. Also the 24 weeks could have made a difference to you and me so not sure why your doctor doesn't want to go with 24 weeks of Harvoni with Riba. Viekira is slightly less effective than Harvoni is he waiting for an as yet not approved med?

Do yoh know what studies are being released in April? Harvoni for Sovaldi relapsers? Declatsvir? Viekira for Sovaldi relapsers? Hadn't heard and am curious to know.


What prescription insurance do you have I have express scripts. I had a tough time getting approved for Harvoni but I was able to and would still qualify as I am F4.

Anyway good luck what ever you decide to do

[Abbas Girl]

He said there are 2 world wide forums that meet twice a year, once in Europe (April) and once in US (Oct) to release their latest findings.  I have Express Scripts with the specialty drugs coming from CuraScript.  He said if they had added Ribaviron with the S/O treatment it might have reached SVR, but we can't play Monday morning quarterback.   He wants me to do the Harvoni/Ribaviron because he said he hasn't seen any studies on the Viekira but thinks the other would be better.  He wants to wait to have more "ammunition" to go at my insurance company.

He also said they may do a study where I go to clinic and if so "would I be willing to participate" and I said "heck yea"! 

Keep in touch. We are traveling this road together.

[Lynn K]

Well great sounds like your doc is on top of things. I have a super handy email address for express scripts it was how I was able to get the riba you may need this address later several here used this address and were able to get their meds fed ex just like I did after weeks of frustration.

expressrxhelp@express-scripts.com

Yeah either add riba to S/O or take it for 24 weeks.

As an F3 you are almost F4 so there is something to that argument as I have seen many times where they write F3/F4 grouping them together so that could also help.

I just remembered due to prior Olysio you are not eligible for Viekira prior N5 something exposure and Olysio is in that class.

[BattleTheBeast]

I second Lynn's super handy email address for Express Scripts! Totally made my life much easier and my denial was an approval very quickly, I also have a somewhat aggressive ID Doc who wasn't taking no for an answer either (he's awesome).

Anyway I recommend you try that address, just tell them your story and ask if they can tell you why you were denied and why they would rather have you sick in the hospital and paying those costs when they could cure you. You need to be a little blunt when you email them but be honest

Good Luck and I believe you will beat this beast next time!

Mel

[Abbas Girl]

Thank you guys so much!  I appreciate any and all info on this terrible virus I can get and I love the victory stories I read.  I know they are routinely checking for Hep C now and there seems to be a lot of surprised people out there.  I really appreciate the email for express scripts.  They are awful to deal with because no one there seems to want to do their job. 

Best of luck to all of you and I hope we all kick butt together!

[badbradley]

Abbas Girl, 
     Thanks for posting your status. There are a handful of us still treating on S/O or waiting for SVR results. It is very helpful for others to know your profile for comparing results. I will be doing a more thorogh profile for myself as well. Thanks again and I hope you don't have the problems others are having getting treatment.
Brad