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Ended Harvoni 12 tx july 6th looks like it didnt work for me

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Posted 8/4/2015 10:44 PM (GMT 0)
I ended tx 7/6 2 weeks earlier I was UD. Routine blood test for my physical today gave numbers of AST 156
ALT at 302. Called my hep Dr today he states Hep c likely returned as I have cirrhosis. He wants me to come in for a blood test tomorrow to see if I did indeed relapsed. First treatment and it don't look good. Bummed.

It should be noted I was Undetected from the 4th week of treatment to the EOT.


Dennis shakehead

Post Edited (tmf12) : 8/12/2015 8:38:43 AM (GMT-6)

Posted 8/5/2015 1:08 AM (GMT 0)
Wow Dennis I am bummed for you. Wrenching news and those numbers seem really high. Were they that high before you started treatment?

I finished tx on July 1 so I am not sure if I am out of the woods, so hard to hear when tx isn't successful. Keeping my fingers crossed for you and so sorry you are facing this challenge.
Posted 8/5/2015 4:43 PM (GMT 0)
Don't know the numbers prior without looking through a lot of paper work .but during Harvoni tx they were way lower according to the hep doc. Just came back from the blood draw so soon it should be confirmed a relapse or something else going on.

Dennis
Posted 8/5/2015 6:27 PM (GMT 0)
Dennis...so sorry to hear your ALT/AST are high again. Disappointing news. My guy was GT3. He treated twice, and thankfully, he did eradicate the virus the 2nd time. Let us know, and if you will treat again. I posted about a couple of new things for GT3 and GT4 that were approved by the FDA last week. Not sure if that applies to you, but wanted to mentione it. Big Hugs
Posted 8/5/2015 8:50 PM (GMT 0)
Did your alt/ast ever normalize while on treatment.

In the meanwhile, there are other options to discuss with your hep Dr.
First option is retreating with harvoni for 24 weeks.
Second option is using viekira pak, which uses a third enzyme, A protease inhibitor.
Third option is sovaldi/olysio/riba for 24 weeks

You should be approved for any of these immediately.
Barry
Posted 8/5/2015 9:18 PM (GMT 0)
I'm majorly bummed for you Dennis, so sorry you got hammered with such bad news. I took a peek at your previous posts...man, you've done everything right. BTW...as of your post on 4/24/15...your ALT = 40 and your AST = 37.

One of my dear friends completed his 4th treatment just last year and it looks like this last time was the charm for him. Although he has remained in good health despite having had hep c for about 38 years (like myself), we both agree...life after hep c is a blessing.
Another buddy up in Canada is loving life after hep c...this, after multiple treatment failures. He was essentially written off by his gastroenterologist as a dead man walking, but he beat all the odds and right now he may not even need to remain on the transplant list.

I know you can't be anything other than bummed right now and I'm not trying to blow smoke up your butt, but after spending more than 35 years in healthcare, I've learned that attitude is as close to everything as you can get.

Hang tough and keep the faith. My thoughts and prayers are with you.
Posted 8/6/2015 2:29 PM (GMT 0)
Dennis,

Sorry to have your news. With so many new meds out there and threatment regimens I am certain your Hep will come up with a retreatment idea. Barry is on to what they do for folks.

We have had some other relapsers here who have gone on to another regimen and cleared.

My partner did two, one in 2003 and the one that worked in 2014.

I was so very disappointed to hear that your labs were up, but maybe there is still that continuing for more weeks plan...let us hear what you and your doc decide.

Hugs,

Mama Lama
Posted 8/6/2015 4:20 PM (GMT 0)
Still no confirmation on my blood work. My Dr was in the room during my blood draw yesterday and said one step at a time and if indeed a relapse that we will go with re-treatment of 24 weeks with riba. he stated he did not know if the insurance would approve of a re-treatment. I've heard riba is bad with the sides, I wonder if it would be a option to retreat without the riba for 24 weeks.

Dennis
Posted 8/6/2015 6:02 PM (GMT 0)
I'm thinking of you today, Dennis.

I think I would despair, but then I read the replies from others - and I think you might just be in the process of being cured.

Listen to the people here. All the brains and experience found here will not steer you wrong.

Schimbare
Posted 8/7/2015 10:49 AM (GMT 0)
Keeping my fingers crossed for you...

The viral load result is an agonizingly long wait for me. Sometimes I snap out of it and realize it is only a few days. It's partly because everything else results so quickly that it seems so long.

I'll cross my toes also.
Posted 8/7/2015 9:58 PM (GMT 0)
Havent heard anything and called the Docs office bad news relapse. They are filling out the paperwork for insurance for 24 weeks and noted they didnt know if my insurance would cover a retreatment with Harvoni, but the insurance will make a decision in about a week. With my cirrhosis I would think it wouldnt be a problem with retreatment.

Dennis
Posted 8/8/2015 12:38 AM (GMT 0)
Sorry to hear about your relapse, Dennis.
I treated for 12 weeks with Sovaldi, Interferon and Ribavirin. All was good until six months after treatment when I found out that I relapsed. Then my doctor did a Fibrosure blood test which indicated cirrhosis. I asked my doctor why he didn't test for cirrhosis before we started treatment.
Six months of the above combo treatment probably would have cleared me, but who knows. I just rolled with it. That doc is practicing medicine and learning as he goes. Lol
Six months of Harvoni is a 99% cure with cirrhosis. And new treatments coming down the pipe should be better.
Good luck!
Posted 8/8/2015 2:47 AM (GMT 0)
The American liver foundation makes guidelines for Drs. To consider the best Rx available for retreatment. Your dr has chosen the right tx. Now the Dr needs to be ready to appeal any refusal. It may take 2 or3 appeals.

Treating you now is the most cost effective choice.
Esld and transplant could cost them a million, as opposed to
100,000+
Barry
Posted 8/8/2015 2:56 AM (GMT 0)
I forgot to give this;

Google. Hcv guidelines
Posted 8/8/2015 10:44 AM (GMT 0)
Wrenching news for me, hard to fathom how it feels to be in your shoes. With some awareness that I have no guarantee I won't be in them down the road...

I do think it is lucky you had routine blood drawn and found out early, getting on it sooner is likely to minimize the damage. Not a big silver lining but something. Learning to roll with the punches and try to find a bright spot amongst the hits has served me well.
My best wishes to you and hopes that it all goes smoothly for a retx.

Barbara
Posted 8/10/2015 10:15 PM (GMT 0)
Nothing new from Doctors office or insurance. When I called Friday they sounded pessimistic about the Insurance Company approving a 24 week re-treatment with Harvoni/Ribavirin. I was C4 and treatment-naive, I thought this would be it after the hassle of getting the meds...1st rejection was demanding a biopsy which I did then was approved for 12 weeks, the phone calls, worry, stress and thank goodness I wasn’t burdened with the costs ($95.000). It was all for nothing. Looking over a couple of other post treatment forums the stats seem to be coming in now with the 12 weekers and unfortunately they are seeing more and more relapses more so with patents with Cirrhosis. I've seen somewhere that there is only 81% 12 week SVR rates for cirrhotics. I wish my Doctor put me on a 24 week regime but he was following guidelines.

Dennis shocked
Posted 8/11/2015 11:38 AM (GMT 0)
Any chance to enroll in a trial study? I read yesterday results from a trial of the new Merck medicine and in it mention was made that they were lacking participants with genotypes 4 and 6. Just a thought.
Posted 8/11/2015 4:31 PM (GMT 0)
Where I live is pretty out of the way, no transplant centers and only one hep doc in the state. I'm geno type 1A with C4 so I would be cautious to enroll in
anything experimental that might lead to hasten liver damage' even if something like that was available which is not the case. Thanks for the imput
though.

Dennis
Posted 8/16/2015 4:34 PM (GMT 0)
Just to keep folks updated I notified my Hep Doc on the latest guidelines for relapse with Harvoni. He stated my progression and reaction to the treatment was good until several weeks after EOT thus he believed no resistance was present. Later in the day his office called and stated that they were requesting info on labs that test for resistance-associated variants and will see if my insurance would pay for this testing. The results of the test will determine what action to take and they would contact Gilead on appropriate treatment protocols. With no resistance he will retreat with 24 weeks he believes. I'm thinking if the testing is favorable for Harvoni
my insurance would cover vs without testing. By the way my viral count is 3 million higher then pre treatment.

Dennis

Post Edited (tmf12) : 8/16/2015 12:38:46 PM (GMT-6)

Posted 8/16/2015 6:32 PM (GMT 0)
The testing sounds like a very good idea to me. The more info, the better! So sorry about the relapse, Dennis. Keep us in the loop. I am following you as this proceeds.Big Hugs
Posted 8/26/2015 7:48 PM (GMT 0)
Got the word from Cigna Pharmacy that my insurance denied another round of Harvoni. I've not relieved the official letter of denial yet stating the reasoning. I called the Dr and was told they were still waiting on approval from my insurance for the resistance testing which costs 7k, So it looks like Im in a holding pattern with a cirrhosis of the liver with a 3 million viral count.

Dennis
Posted 8/30/2015 9:44 PM (GMT 0)
Hi Dennis- Do not give up-- appeal every denial. You have a good argument that they either need to provide you the resistance test or treat you again according to your doctor's recommendation. The insurance companies are denying about 1/4 of all requests and are counting on patients not to appeal. When you get the decision follow the instructions for filing the next level appeal with the help of your doctor. You can also add research that you can do on line regarding the need for further treatment efforts. Also, ask for another genotype test. Chances are slim but there was a mistake with mine and if they did not test again I would have been treated with wrong medication. I spent last fall fighting and finally got approval in December. Thoughts are with you.
Posted 8/30/2015 11:57 PM (GMT 0)
Well I got the denial letter for 24 weeks retreatment of Harvoni but as of yet have heard if they will grant me the resistance test.

The letter states:

"Based on medical records submitted and medical review the proposed treatment of harvoni to treat Hepatitis C does NOT meet the plans criteria for medical necessity, as there is an indication of prior treatment of harvoni or viekira pak. Incurred claims for these services/supplies will be denied. This notification of non-covered services/supplies is a pre-service adverse benefit determination. The covered person or that person's authorized representative may have the right to appeal this adverse benefit determination. Pleas refer to the enclosed appeal procedure for additional instructions.....Claims Dept"

As I side note nothing was enclosed about appeal procedure as the letter states and I received this on 8/29
when I knew about the decision via the pharmacy on 8/24.


Dennis
Posted 8/31/2015 12:14 AM (GMT 0)
Dennis,

Here is a link to getcured's excellent thread on appealing a denial:

www.healingwell.com/community/default.aspx?f=25&m=3315494

You can contact your insurer and ask for the missing enclosure. Let us hear how things go with this. Big Hugs
Posted 9/1/2015 8:52 PM (GMT 0)
Well my Insurance company denied both the Resistance testing and the retreatment of Harvoni. To appeal I must write a letter to urge medical necessary. Hmmm...I don't really know where to start with this letter any clues? They have documentation of my cirrhosis. Is that not a medical necessity? Has anyone wrote one of these? I'm asking my Doctor to type up a letter to submit along with mine.


Dennis
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