Viekira only thing my insurance will approve

[mikejj24]

I am an almost 60 year old with Genotype 1A, supposedly without Cirrhosis. It is quite likely I have had Hep C for 30 years or more and I feel bad almost all the time now, have pains in my liver area, and often low grade nausea.  I have asthma and COPD also so I have been waiting for Harvoni, since it does not use Peg or Ribavirin. All my doctors attempts to get Harvoni approved by BCBS/Express Scripts have failed. I just got the latest nasty letter from them saying basically "it's not covered and that's final".  I do not qualify for Gilead assistance because of my total household income. Now my doctor is asking me if I want to give in to them and go with Viekira with Ribavirin for 12 Weeks. I am terrified to take the treatment and terrified not to. I have no idea if I can tolerate it or not. Any advice you can provide or experience with this drug combination therapy would be greatly appreciated. For instance, if I had to drop the Ribavirin at some point maybe 3-4 weeks into it...would there be any chance of an SVR? What kind of side effects could I expect? Would I be able to still commute/work? Should I let my employer know in case I can't at some point? So many concerns...

[mikejj24]

A little over 2 weeks now on Harvoni. Sailing along pretty well. I have had some pretty bad headaches the last 3 or 4 days, but I think it is sinus pressure related. I get those really bad this time of year anyway. I might normally get a steroid shot to clear it up, but for now I am going to try and tough it out and hope they subside. For some reason, my doctor does not require labs until 4 weeks. I have no doubt that the medication is working as I said before...I just feel better. I just hope and pray I can sustain it long term after the meds are all gone.

[usarmymr_c]

Hi again mikejj. I am also on day 7 of Harvoni. No side effects. In fact, I wonder if I was given placebos LOL. I nap everyday, but since I retired 4 yrs ago, that's a usual part of my routime. No heaches, I exercise @ a gym 3x a week...no prob with that.  I get my first labs next week, hopefully my HCVRNA will be decreased from 11 million.  Best of luck with our fight. I'll be following your posts

[patra_]

Have you tried hydrating yourself before and after exercise?  Dehydration will cause headaches, all by itself.  This may not be the answer to your headaches, but since you said they occurred 'especially when I exercise'. my thoughts went immediately to the face that exercise dehydrates a person.

Give it a try.  Can't hurt!  So glad you are progressing well.

Go get that Dragon! pat

[mikejj24]

Today is 7 days into treatment with Harvoni. I am very optimistic and blessed. Overall, it has been wonderful as so far I feel fine (actually better) and am able to continue with my normal routine. No one would even know I am in treatment. The side effects I have noticed are minor in my case. Slightly more fatigue/sleepiness, headache especially when I exercise, and some itching with minor rash type splotches on my forearms. All very tolerable and easily mitigated with tylenol, cremes etc. I am sure my doctor will tell me I am imagining things, but my pains and bloated feeling in my liver/ribcage areas has greatly improved almost overnight when I started treatment.

[flyinlynn]

Not much of a vegan but how about the cannabis?

LOL just kidding :-)

[hepcandme]

Ha!

Had to laugh about your doc saying not to believe everything you read on the internet. Someone seems a little threatened by intelligent patients?

While her admonishment is good as a general rule (I can't tell you how many times people have told me that going vegan or smoking cannabis cures cancer), I have learned so much from the people on this forum.

Because our lives are at stake, and we are smart and resourceful and concerned with a very specific issue, we often have more data at our fingertips than most medical professionals

Start with the new guidelines for treatment that everyone is supposed to adhere to and then point out the latest recommendations for treatment that can be found here:

http://www.hcvguidelines.org/full-report-view

You can excerpt the bits that pertain to your case and either print them out or highlight them and hand them to your doc in person

You can also cut and paste specific answers found on the forum - especially those that are backed up with specific cases or links to medical websites

And in case you are wondering, a vegan diet will not cure cancer!

Good luck with your treatment and keep us posted on your progress

[patra_]

Mike:  Is your Dr a hepatologist, gastrointerologist, or infectious disease specialist who treats a LOT of hep C?  I am not trying to disrespect ANY Dr and their training, but from what you have posted, I womder at her knowledge of hepc.  

Is she is thinking about the Ins provider, I would think that she, as a Dr, would be the first to point out that paying for 12 weeks is FAR less expensive than paying for 8 weeks and then having the patient relapse and have to then be treated for 12 or 24 weeks.

Great to hear that you have started tx!  

Good treating and on to SVR!

Pat

[mikejj24]

I bridged the subject of trying to extend to 12 weeks with my doctor and did not get a good response. She was somewhat condescending, saying that she could not justify it because of my biopsy and viral load...and that "I should not believe everything I read on the internet" I was taken aback somewhat over that comment since their office was UNABLE to get Harvoni approved at all and it was my plea to AccredoRxHelp.com that made it happen, which I got the idea from this forum. I don't know how Viral load or biopsy can be the final word as neither of them are all that definitive. I believe the viral load goes up and down depending on your immune system etc. and the biopsy they did was just a small pin prick. They even said that it did not tell the whole story at the time. I will continue to try and see what I can do to convince her. BTW started on the Harvoni last Saturday. So far, nothing to hard to handle. I may have a little more fatigue but not bad. I had trouble sleeping the first night but I think I was just keyed up about it.

[hepcandme]

I would ask for a longer treatment as well only to make sure it gets the job done

For those of us who relapsed on Sovaldi/Olysio, it seems that we may have been cured if we had gone longer? I did a 12 week regimen but now wish I had done 24

The Riba, as Lynn points to, is just one more piece of insurance. My doc ordered it straight away. Lynn had to do some lobbying to add Riba to her treatment but it seems indicated by the new treatment recommendations for those who are difficult to cure

There is a thread that I posted last week I think that contains a link to slides from a recent webinar that summarizes the current recommendations

I can try to find it if you cannot

Good luck on your treatment!

[patra_]

Mike:  I am a conservative person in many ways, not conservative 'take 8 weeks', but conservative 'take 12 weeks', to be sure one time treatment is enough.

Others may not feel that way, but a little extra tx could, IMHO, make the difference between success and relapse.  I would talk to the Dr about choosing 12 wks.

Good luck and good treating, whichever way you go.  On to SVR!!

Pat

[mikejj24]

Since I am now on track to get the Harvoni, I was wondering if I should try and get my treatment extended to 12 weeks instead of the 8 weeks my doctor is suggesting. This would, of course, be depending on how I tolerate the medicine. Like I mentioned before, I likely have had Hep C for ~30 years plus my last sonogram showed what they deemed as fat infiltration in my liver. I want do everything I can to "kill the dragon" on this first attempt.

[flyinlynn]

I was UND at 4 weeks in.

I am a null responder to 3 tries with interferon based treatment. I suspect I was infected in 1978 or 1979. I was dx with Hep C in 1990. I was diagnosed with cirrhosis in 2008 and have since developed edema and a small amount of ascities. I also developed esophageal varicies that went to grade 3 in 2012 so I had 4 sessions of banding. I relapsed on Sovaldi Olysio after 12 weeks of treatment which in November the recommendation was change to 24 weeks for patiientl like my self

Riba Harvoni is recommended for 12 weeks is recommended for GT 1 with decompensated cirrhosis as an example.

So basically based on my treatment history we are pulling out the stops as I amy be running out of time and options.

Lynn

[TPropane]

I've never herald of harvoni with ribaviron. Sovaldi with ribaviron but not harvoni. Hmmmm
I'm a relapser (boceprovir+interferon+riba) 2011 totally back though undetectable at the end of treatment. Now 3 years later I also have cirrhosis.
So the RX is 24 weeks of Harvoni. period 1 pill a day.
Why did your doctor ad riba? were you not responding to harvoni?
Best wishes for a full cure! T

[patra_]

How wonderful!!  You just successfully climbed the first step uphe staircase to SVR.

Good luck and good treating!!

  Pat

[jules2551]

Congrats Mike for hanging in there and getting Harvoni!

Wishing you the best forward

Jules

[mikejj24]

Well an interesting turn of events happened yesterday. My doctor called me out-of-the-blue and told me the Harvoni had been approved...shock! This is after the second denial letter stating it was final like 2 days before. I am not sure how this came about. My doctor had originally submitted my Harvoni prescription to TLC specialty pharmacy. Somehow, I kept getting denials from Express Scripts and subsequent calls from Acredo trying to get me to go with Viekira. Express Scripts is what my employer has and Acredo is the specialty pharmacy associated with them. So after all of the denials etc. I posted what took place here and someone suggested that I contact AccredoRxHelp.com to make a case for Harvoni. I basically, just sent an email and copied and pasted what I wrote on the forum. They responded and faxed a new prior authorization request to my doctor. She filled it out, sent it back in, and voila! like two days later I got the call telling me it was approved. I am not sure if this is a loophole they have not closed yet or what, but I am excited to get the approval. I should receive the first 28 day supply in the next few days. The plan is 8 weeks of just Harvoni. I will follow up as I go along with the process. Wish me luck!

[keepingOnkeepingOn]

Keep us posted on how you are doing on the V-Pak treatment. Learn how to help anemia in case it becomes an issue on RIBA

[flyinlynn]

Hi Mike

Yes that means you are treatment naive. Also Interferon and Ribavirin are so 2013 in the US no one I know of is being treated with that combo. Last year was either Sovaldi with ribaviron and maybe interferon. Another option was Sovaldi Olysio. Harvoni single pill combo (combo of Sovaldi Ledipasvir) was approved on 10 October and Viekira Pak was approved 19 December. So a wile lot has changed in 13 months all for the better

Good luck may you make SVR
Lynn

[patra_]

Good for your Dr!!! That combo did work on people, but had a lot of side effects AND was for a much longer period of treatment!  Riba bothers some people but not others, but is still doable.  These new neds have many less and much less severe sides.  

Yes, please keep us informed, and don't hesitate to ask questions as they come up.

Go get that DRAGON!  Pat

[mikejj24]

Thanks for all the advice, I was feeling pretty alone when I posted. It is uplifting to have people take the time to respond. I am going to pursue the Viekira Plus Riba in the upcoming weeks. Hopefully, I can "suck it up" enough to get through this and put it all behind me. I will post updates when I hear anything new and as I go along with the treatments.  

[mikejj24]

I have never been treated before now, I am assuming that means I am treatment naive. I did not even know I had Hep C until about a year ago.  My doctor and I decided to wait on some of the new meds instead of going with Peg and Riba.

[Dee1956]

Hey there!  I think, somehow riba is getting a bad reputation because of its association with interferon.
As Worried Mom said, it is the combination that was hard.
If I were you I would take it one day at a time to see how you do.
If you run into problems you can deal with it then.
The best part is that it is only 12 weeks.
Dee

[susan400]

With the COPD, I can understand your concerns. Could you possibly, prior to treatment, set up something where you can have regular breathing treatments? I don't know, you maybe already doing that for yourself at home.  If not, would having a standing order for breathing treatments, if you need them, I mean, help allay some of your fears about the Riba? I know for me, I don't have COPD, but I do have asthma. All but one of my treatments have included Riba. I have noticed that I need to use my handheld Ventolin inhaler more frequently on treatment, than off, but to the wheezing. But, it seems to hold it in check.  As it was said above, the newer treatments are shorter duration and usually, the treatment would be over before the anemia would set in.  Just something to consider, don't know if this suggestion would be doable or not.  Susan400

[keepingOnkeepingOn]

What have you got to lose? There hasn't been any bad info out there about this combo. No bad info about riba this time around. It's the interferon needle that is a downer. Here is your chance. Take it. Accept that we each get what we need. 95% success rate. 12 weeks. Why not? Tell your employer you will be starting a new medicine for 12 weeks for mild asthma and you are not sure if you'll have side effects and you may not be up to par so for them not to think you are sloughing off but you are giving them a heads up. Don't tell them everything. Keep it short and brief. There is a stigma attached to HCV and this is not the time to have added stress from your employer.