Author Topic: Anyone on Viekira Pak or completed Viekira Pak? (Read 129400 times)

skycatcher · « **on:** February 18, 2015, 05:36:06 pm »

Hi everybody!
Monday (02/16/2015) went to the Doctor and the bottom line is she is suggesting the Viekira Pak for me. I was very "ready" for Harvoni especially reading the literature and peoples experiences and all of the positive results folks are getting during and after Harvoni treatment. She was saying that it looks as though the Insurance Co does not want to cover Harvoni but instead the Viekira Pak. Which makes no sense to me due to cost of the additional ribavirin. Right now I am in the waiting period: blood work results, Insurance Co approval. You know just chillin' right now - could be up to 6 weeks.
I have read many, many, many testimonials of people on Harvoni but nothing about the Viekira Pak recipients and their experiences. I've read the insert and it sounds like a really powerful drug combo. I would like to know what is the Viekira Pak experience....

I was first diagnosed in 1993 with HCV. My liver nums have always been very low and in general I have done pretty good. I am GenoType 1a. I have just recently gotten insurance so once everything is in place maybe I can become well and slay this HCV beast.

Any feedback would be greatly appreciated. ~ Thanks all

sapphire101 · « **Reply #1 on:** February 18, 2015, 10:43:06 pm »

Yes Skycatcher our numbers are not big, but we are out there. Look for posts by sapphire101, RedHen, Zeena, and ekaraeana.
Viekira has the same high success rate as harvoni that is the good news. It is a lot more pills though, I take five in the morning and three at night.
Also more pills means more chance of side effects and that is especially true with the addition of ribavirin.
I will be posting weekly (stared yesterday) so by the time you start I will be half way through my journey.
One thing I have learned from this forum is that knowledge is truly power. Learn from us who go before you and you will be able to strongly advocate for yourself.

best regards and best wishes for your approvals to come through.

dogdave · « **Reply #2 on:** February 19, 2015, 12:50:35 pm »

Hi skycatcher, it looks like you and I are in a very similar situation. I ran out to get labs yesterday because the last (6 week labs) expired. Insurance won't pay for anything but Viekira. It looks like 24 weeks of drugs including ribaviron. Had Hep C for 40+ years. Liver biopsies were coming back at stage 2 fibrosis. Finally had a Fibroscan and that revealed stage 4 cirrhosis. Now I am waiting for the approval of Anthem. Did several clinical trials in the 90's. At least a year and 1/4 of interferon and ribaviron. GT 1a-b. I want to beat this thing so bad. I am sick and tired of being sick and tired.
Good luck. Looks like we will be in the class of 2015!
Dave

skycatcher · « **Reply #3 on:** February 19, 2015, 04:30:55 pm »

Thanks Sapphire101 and dogdave for your replies and sharing what's going on with you.. It means a lot to me that we can jump into the fire together ...

I have never had a liver biopsy -- I am a big chicken when it comes to things like that and avoid being stuck as much as possible. Just recently had an ultra sound on my liver and indicates slight fatty liver issues. I am hoping the HCV treatment will help this by reducing inflammation. In the mean time I am really eating small meals and much lighter foods and just what ever sounds right or feels good. I have a good understanding of foods and eat close to nature most of time.

In the '90s I went to a support group for a while. A few people in my support group were on interferon and riba. Out of the 4 people I knew 3 had major side effects. One guy had to quit the treatment. One person seem to fair pretty good and did not seem to have any issues. But I only knew him during the first month of his treatment. As you are well aware the success rate was only 12 - 13 % then and has climbed slowly over the years.

At that time I was very stable , numbers were low, felt mostly ok 'cept bein' tired.

I entertained the idea of doing trails but decided not to. I looked at it over the years but never did. Then I started seeing the promise of these drugs today and wanted to look into trails but I was living too far away from the trial studies at that time. And here I am.

Hats off to everyone who did the trails and studies! The volumes of work and the studies that have come out of all of this research offer a real promise today. Everyone who has participated in the research and studies are worth your weigh in gold.

In a lot of ways the Viekira Pak sounds like it is a more multi pronged approach. Almost like a shotgun blast for a flea... So I am hoping to learn more about it's action. Sappire101 I will definitely follow your posts. And dogdave yours too. I am ready to get on with the rest of my life and I know you are too.

skycatcher

skycatcher · « **Reply #4 on:** February 19, 2015, 04:35:16 pm »

Hey dogdave! To the class of 2015!

dogdave · « **Reply #5 on:** February 19, 2015, 05:40:40 pm »

I worked for nearly a year to get this treatment. I was talked into it by a GI who was doing a per-colonoscopy screen. Its taken so long there is a part me is not ready to trust Anthem to come through. It is with a little bit of bitterness that I used myself as a guinea pig for trials and then given such a hard time getting treatment. One doctor told me that Insurance companies are waiting for you to get new insurance or die. I get it. At thousand plus dollars for a pilland 90 pills? There should be a laws.

Anyway, I will take this. I did interferon and ribavrin in the 90's and worked at the same time. Now I can't even mow the whole lawn at one time. I hope the full treatment of Viekira kicks butt! Good luck and post how your doing!
Oh yeah, I belonged to support groups also. Many of those people have died. Take Hep C seriously. Dave

Red Hen · « **Reply #6 on:** February 19, 2015, 06:28:23 pm »

Hi. I stopped posting for awhile because no one else had used Viekira Pak. Now, I'm seeing some are. Sapphire is one of the few I knew of. I completed 12 weeks of Viekira and ribavirin about a month ago last week. So far, so good. My main side effect was intense itching which started in my first week of taking the drugs. Fortunately, my doctor said I could take o.t.c. benadryl. One benadryl at bed time was enough to calm the itching at night and help me sleep. I took benadryl all through the 12 weeks and beyond for 2 weeks afterwards. Drinking lots of water helped. I also developed hives and other skin rashes which came and went. One Benadryl at night, drinking water and wearing loose fitting clothing helped. I also experienced slight nausea the first couple weeks and feeling "brain dead" for about 2 hours every morning. That went away. I was tired most of the time but did not have trouble doing routine work. What I did have trouble with was socializing with friends and going out at night. My husband says I was more cranky than usual, too.

dogdave · « **Reply #7 on:** February 19, 2015, 07:19:56 pm »

I hope that you cleared the virus!

rando archer · « **Reply #8 on:** February 19, 2015, 10:20:20 pm »

Hello skycatcher - I will probably obtain Viekira Pak w/o Ribavirin in a couple of weeks. Be back with updates and my story later. I am really interested with any feedback on side effects with VPak w/o Riba.

Best regards to all!

skycatcher · « **Reply #9 on:** February 20, 2015, 12:07:54 am »

Hello to all! Thanks bunches for all the feedback. You go Red Hen!!! That's great info about the itching - Benadryl makes a lot of sense. And thanks you are the first person that has shared about being on and completing the Vpak.

I agree with you Dave. HCV is serious business. Always heard that the enzyme count is no real measure of the virus. It is sneaky like that.

Later....

skycatcher

Lynn K · « **Reply #10 on:** February 20, 2015, 03:26:43 am »

Hi Red Hen

Glad you found you way back we missed you :-)

Red Hen · « **Reply #11 on:** February 20, 2015, 11:18:16 am »

Hi, Lynn K. Hope I can be of some help. I got discouraged for awhile and needed to be more involved with off-line life; dogs, outdoors, art etc.
To reply to dogdave's question about clearing the virus: Well, My viral load dropped from 250,000 to 170,000 in the first week! I get a ton of tests because of being on a drug study. By the 3rd week the HCV was undetected. Stayed undetected from that time. I still had to finish the meds and do the whole protocol. My doctors at the clinic contact me if they see anything of concern in my lab tests, etc. I am not one to follow all the details because I'd really rather think about other things. If anything concerned my doctors I would be more concerned, of course. At this point, 5 weeks post treatment, still undetected. However, the 12 week blood work is more important and then the 24 week blood work is more important yet. Long process. I have a lot of faith in my clinic, which specializes in HIV and HCV. Lots of experienced people there. I'm expecting that we will all get over this disease in the long run!

dogdave · « **Reply #12 on:** February 20, 2015, 12:34:11 pm »

Red Hen, thanks for sharing your progress. It looks like I am approved for the V-pak and Ribavirin. I look forward to putting this behind me.

David

skycatcher · « **Reply #13 on:** February 20, 2015, 03:14:14 pm »

Hi to everyone!

Welcome Rando Archer! I just started posting the other day too.

Congrats DogDave on getting approval for the Vpak. I hope you feel lots better very soon. It bugs me when I have no energy. it's difficult to explain to others that have never been through this. I usually find something to do that I can instead. Be it a nap or drawing (or attempting to...) I've recently been in the "LowGo" mode for several weeks now. One day just to run the vacuum around the house was all I had that day. I take it one day at a time. My energy has started coming back now though.

I just got my blood work from Monday.
Not as bad as it could be I guess. This is the first time though I have had
AST and ALT up 20 and 43 points. ALK PHOS up 12 points.
My viral load has gone from 32,521 in 2000 to 929,000 02/16/2015.
Big difference.

Over the years I have read that HCV kind of can sneak up on you without you being aware. I've been very aware of what my body has been saying and that is "help I need treatment now".

I also think the cost for treatment is unreal. But I know the companies have spent billons in research dollars. Thank goodness they have chosen this virus. I hope everyone gets clear and viral loads go to "0".

SkyCatcher

aveinc · « **Reply #14 on:** February 22, 2015, 01:55:56 pm »

I'm 24 days in and I've posted how its effecting me. The worst part of this whole experience beside the harm caused to my body was the God awful DENIAL LETTERS EXPRESS SCRIPTS HAD THE NERVE TO SEND OUT DENYING HARVONI, WHILE DR. STEVE MILLER NEGOIATED WITH OUR LIVES FOR $....TO CALL HARVONI AND VIEKIRA WITH RIBA THE SAME IS JUST NOT RIGHT..IM PISSED SORRY BUT IF I DONT GET IT OFF MY CHEST....I HAD ALOT MORE HOPE FOR OUR NATIONAL HEALTH CARE SYSTEM. THANKS FOR ALL THE HELL YOUVE PUT A LOT OF DECENT PEOPLE THROUGH,AND I JUST WONDER IF DR MILLERS DAUGHTER WAS FACING THIS WHAT PROTOCOL HE WOULD CHOOSE FOR HER? I THOUGHT I HAD THE BEST INSURANCE YOU COULD OBTAIN, I JUST WAS UNAWARE THAT CORPRATE AMERICA COULD DECIDE INSTEAD OF MY DOCTOR HOW TO TREAT A LIFE THREATING DISEASE,

??

Lynn K · « **Reply #15 on:** February 22, 2015, 02:13:43 pm »

Aveinc

I had a hard time with express scripts until I found this email address:

expressrxhelp@express-scripts.com

I wrote them an email explaining my health situation and why I felt that I needed to have Harvoni. I was called the next day but an Express Scripts Accredo supervisor and had the meds the next day.

You would still either need to be F3 or F4 or have a reason you cannot tolerate Viekira Pack but this email have gotten 5 people Harvoni when they were being denied

Good luck

aveinc · « **Reply #16 on:** February 22, 2015, 02:53:47 pm »

Thanks Lynn,I've read many of your post and so glad to see you got results.I was answering Express Scripts denial letters during Nov.and Dec. with out media protest and had approval for viekira with riba during Jan. I am grateful not to be going through what so many have before me with inferior treatment and applaud our the many recent medical break through, however our system has a major flaw and if we don't expose the problem then we all will suffer at wall st.s profit...I hope to complete my 84 days and not have to go through any more of this.One day at a time.but i wont forget or be quiet about anything I've learned or experienced through this.

dogdave · « **Reply #17 on:** February 22, 2015, 03:26:26 pm »

Havoni is my first choice for treatment. Refusal has been consistent from Anthem because liver biopsy said f2. Finally had a Fibroscan which indicated f4 cirrhosis. So apparently I am getting Viekira. I have been fight this for a year. I am tired for this illness and I will try this. I understand your anger at ExpressScript's aveinc, so am I. I am trying look at this like my best chance at this moment. Good luck with your treatment. Dave

aveinc · « **Reply #18 on:** February 22, 2015, 04:01:56 pm »

Dog I feel you. I have chosen by default to use what express scripts mandates,my Dr wanted as did I to use Harvoni. I wonder how this will all play out.I really feel for those suffering with no insurance, Its not that hard to imagine.My mind went through allot when i was being denied not having a clue as to the game being played out by express scripts/Gilead and Abbvie.I hope the stigma that I believe is plaguing this disease is soon put to bed. Hep C affects anyone not just those whose lifestyles are questionable,and the sooner everyone realizes; we are all human beings and everyone deserves help and the right to choose there Dr. and his or her right to choose the method of treatment for their patients.

sapphire101 · « **Reply #19 on:** February 22, 2015, 05:58:04 pm »

Day #24 Aveinc!
Woot WOOT!!
I can not wait to as far down the road as you are. It is day #7 for me tomorrow on Viekira pak with riba.
I too was mystified as to why we did not get the harvoni option and had V-pak been less as efficacious I would have fought the good fight. As it is... I just don't have the energy and I am instead going with this and keeping my eye on the prize.
I do believe that our struggles will be noticed and will be a catalyst for big pharma change in the future.
We are part of something big here and it can happen again even after HCV is a distant memory there will new viruses and new cures and a whole planet of people who deserve to have a fair chance at health.

llory86 · « **Reply #20 on:** February 23, 2015, 09:48:43 am »

Hello everybody. I'm here to share my father's experience with Viekira Pak.
He's 72 yo, geno 1b with cirrhosis and he failed all the previous therapies with Interferon and Riba but he didn't try neither Telaprevir nor Boceprevir.
He is on 12 weeks of Viekira plus weight-based RBV (1000 mg [<75 kg] so he takes 9 pills a day with food. (3 pills of Viekira + 2 Riba in the morning and 1 Viekira + 3 Riba in the evening)

Now dad is on his 5 week of treatment and he’s still waiting for his 4 week blood exams. Till now he didn't have any sides from the drugs and could barely say he is on therapy just because he had to swallow a lot of pills.. At first he was scared from Riba because in the past he had to discontinue one of his treatments for the horrible rash and itching the Riba gave him but maybe it was the interaction with interferon, in fact today he has no sides at all.
These are his blood work results till now
pre tx 1 week 2 week 3 week
Vl Rna <600.000 216 125 18
Ast 298 123 50 46
Alt 200 125 x 31
Alb 43 44,4 44,7 44,3
Bil tot 1,9 1,7 x 1,9
Plt 58 81 119 92
Wbc 3,64 5,3 6,6 5,5
Rbc 3,99 4,03 3,95 3,9
Hg 13,6 13,8 13,2 13,3

Wishing you all the best

Red Hen · « **Reply #21 on:** February 23, 2015, 04:56:41 pm »

Hi, Ilory86. Glad to hear your dad is not having trouble with side effects. Wishing the best of luck to all of us!

skycatcher · « **Reply #22 on:** February 23, 2015, 09:29:40 pm »

Big Hello to everybody! Thanks for all the great input. All this great news about every ones numbers decreasing is really exciting. Also the really great input about the not too awful side effects is reassuring me. Or at least I should say the side effect of the "dark ages" (15 - 20 years ago) compared to today.

Sapphire101 really appreciate your story as you go along the treatment path. I will be sharing my story once I get the approval.

RedHen I think it is absolutely important to focus on life off-line. I think for me it is very important to have days that have nothing to do with computers or HCV. I call it a mini vacation.

~ SkyCatcher

Red Hen · « **Reply #23 on:** February 24, 2015, 10:51:24 am »

Thanks, Sky Catcher. My spell check wants to change your name to Skywalker.

It helps me most to get outdoors or to go somewhere fun, hear music, eat out, etc. Not to always identify with being in HCV land.

llory86 · « **Reply #24 on:** February 28, 2015, 02:34:49 am »

Hello again. Dad got his 5 week blood test. He's still waiting for the 4 week's one and both the VL. Everything is going on, he feels just less hungry than usual and his blood pressure was surprisingly a bit high. Anyone has having the same issue? He found it just before the CT done to investigate the course of his cirrhosys.
Results at the end of 5 weeks on Viekira + RBV:
3 week 5 week
Vl Rna 18 ??
Ast 46 35
Alt 31 23
Alb 44,3 45,9
Bil tot 1,9 1,6
Plt 92 100
Wbc 5,5 5,2
Rbc 3,9 4,10
Hg 13,3 14
Well, that's it, I am hoping for the best

dogdave · « **Reply #25 on:** February 28, 2015, 12:09:15 pm »

Well, after calling Accredo in attempt to expedite my treatment with Viekira and Ribavirin, my GI called and said they were going to get Harvoni for my treatment. I have been down this road before with Anthem. Accredo called me to inform me that I was indeed denied the Viekira. While I was looking forward to treatment and Harvoni is my preferred choice, I want to get on with this treatment. This whole thing is wearing me down. I have to wait again while the doc/insurance fight it out. I feel a little down, after a year of messing around with Anthem.

David

Red Hen · « **Reply #26 on:** February 28, 2015, 06:33:24 pm »

David, don't feel too bad. Just keep trying. The Harvoni really is the "drug of choice" because of shorter time to take, fewer pills and fewer side effects for most people. I hate that you have to keep waiting. Let us know what happens.

Red Hen · « **Reply #27 on:** February 28, 2015, 06:39:41 pm »

llory86, I had the lack of appetite, too. I didn't mind that. I also had high blood pressure more than once and a high heart rate sometimes. I don't know if this was a side effect of the drugs or another condition. I hope your father is doing well.

dogdave · « **Reply #28 on:** February 28, 2015, 09:03:09 pm »

I will do that, I prefer that choice myself. It just that I haven't seen anything except denials from the insurance, so I have to tempered myself not to get my hopes up. I really need to vent also. Thank for your kind words, Red Hen!
David

llory86 · « **Reply #29 on:** March 01, 2015, 03:01:44 am »

Red Hen thanks for your answer. No his high heart rate was normal. I'll check with his dr in the next apt. I think his very stressed for his 4 week vl didn't come yet. I read all people advice to drink a lot of water while on tx and I am sure this is a healthy lifestyle but why it helps especially with this new drugs?

skycatcher · « **Reply #30 on:** March 01, 2015, 01:53:46 pm »

Hi All!

Sorry for the delay -- incommunicado moment -- David it really angers me that all of this is happening to you. At one point throughout the years I was told by a mental health person, probably a social worker, that because of my HCV plus a few other issues that I could not be discriminated against. Throughout the years I have always just paced myself and have been able to live a fairly normal live. But because HCV folk can become disabled and unable to do normal stuff, I wonder if you can seek informed help from state and federal agencies. Maybe things have changed a great deal over the last 25 years with all of the changes for insurance and agencies, but don't you just wonder if someone who deals with disability services could put a fire under that insurance co for you? Or perhaps with a little help you could look at disability law as stated and perhaps send them an "informed" letter stating your legal rights as a human under protective laws.... Sometimes if you let them know you understand their game a little better then they think you do it just might get their attention. All sorts of information is online ... just saying...And you may already know this.

Might be worth checking in to if you haven't already. If you have and it's been awhile call that agency person back. Or find a new person to advocate for you.
I am keeping my fingers crossed for you David and sending positive energy to Ya...

Just adding my two cents....
I don't believe in "NO" when it should be "YES". You just have to look, and ask, and look, and ask... I always find I gleam more information this way. A little piece of info here, there, then I piece the puzzle together... Then finally I have an answer. On most stuff anyway.

My latest news: I got a call from the RN for my Doc and she was saying that the insurance will not approve Vpak but instead is approving Harvoni. This week I will be getting a call from a lady at the specialty pharmacy about setting up delivery. My insurance co worked out a deal with CVS CareMark a few months ago to handle Harvoni (I told my Doc that) but she was wanting to prescribe Vpak.

But in the mean time I found a website that has very insightful info about how these drugs work at a cellular level. The sight is "Medscape". Personally I want to know to the best of my ability how a med works. I haven't done the big search on Harvoni yet but will tomorrow.

After hearing about everyone's positive experiences and reading about Vpak ALL of my uncertainty has gone out of the window about Vpak. It is really impressive how it gets to the "heart of the matter" and stops the virus from replicating.

To a speedy and permanent recovery for all! ~ Later ~ SkyCatcher

dogdave · « **Reply #31 on:** March 01, 2015, 04:04:22 pm »

Skycatcher,
I will advocate to the insurance commission in my state if necessary. Part of this thing is not knowing what going on in the background. Because I have not actually seen results, I don't exactly have knowledge of where I am at. I've seen Solvadi appear on my prescription list then disappear with denials. Same with Viekira. Although I have talked to Accredo and my GI that I am learning that that does not make it so. My GI apparently has several cases in this status. So I am not in despair yet. I am hopeful and impatient. I am also very fatigued, so yes cranky. I appreciate everyone's concern and am glad you also are getting Harvoni.
My best, David

skycatcher · « **Reply #32 on:** March 01, 2015, 07:55:40 pm »

Yes David seems getting answers can be difficult and it certainly can be very tiring. Hope you can get resolution soon. Oh being cranky is OK. Every one can get to that space sometimes T-o-o-o soon. But I haven't noticed it...
I appreciate every one and their stories. All of the sharing...
~ SkyCatcher

Lynn K · « **Reply #33 on:** March 01, 2015, 10:03:13 pm »

Hi David

I also Have Express Scripts and Accredo and was also initially denied Harvoni. I found and article they had written in sort of a peer to peer article about reducing Hep c relapse which I felt compelled to comment on. They asked me to contact them by email at
expressrxhelp@express-scripts.com

with my member ID and contact information. I sent them an email describing my medical situation and my extreme frustration at dealing with their company especially with essentially my life on the line.

My closing remark to them:

"I am frustrated to the point of considering contacting my local media to bring to light my distress with my Express Scripts experience and their cavalier, indifferent attitude toward its customers and their health."

That seemed to get their attention.

They called me the next day and the following day I received Harvoni by overnight express UPS. I have shared this address with several others people and about five others have been able to get meds previously denied by contacting this email.

It hasn't worked for everyone but it is worth a shot.

Good luck

dogdave · « **Reply #34 on:** March 02, 2015, 03:26:48 pm »

Hi Lynn,

Today I logged on to check my express-script's account and found that my Viekira was cancelled, along with ribavirin. I expected that, but I was didn't see Harvoni being listed. I called Anthem and they told me that they received the prescription for Harvoni which was denied along with the Viekira on the 25th of Feb. The representative told me I could appeal the decision so I need to have the paperwork organzied.

The last conversation with my GI office the medical assistant told me that they would call me and that I need not call them. Of course I called and got voice mail. This is like a roller-coaster, I've been here before! Before I use the email address I want to make sure that I understand whats going on at the doctor's office. I am dismayed.

The GI who did my Fibrosure told on the spot what tests to get, Cancer scans, hepatic encephalopathy tests, and that I had f4 cirrhosis. She said that it explained the fatigue and for the 1st time I felt that was validated for feeling the way I did. Something in her manner seem to be not overly optimistic about getting treatment. My GI office was much more optimistic about.

I am the type who that wants to take on the problem as fast as possible. This has taken the wind out of my sails. I found all my denials from Anthem. Now there are at least 5.

The GI office just called me and my physician's assistant called me back and she was surprised that I was declined. She said that they suggest Harvoni and why had they not request that. She is calling them now. She said it will be back to the transplant center for me to see if they will get it for me if she didn't have results. Ahhh!!

I reread your post and I will regroup to fight them.

Thanks for your response,
David

skycatcher · « **Reply #35 on:** March 02, 2015, 03:32:31 pm »

Big Hello to everyone!!!
Well it looks as though Wednesday is the day I take delivery of my medication and it is Harvoni!
Been living with HVC for 40 years. I am ready to get on with it. I think I will start taking it Thursday get a nice even start. I will post my progress to you. It is so important to not be alone in this process and to be able to share all things.

Yours in Health ~ SkyCatcher

skycatcher · « **Reply #36 on:** March 02, 2015, 03:36:21 pm »

David! Dude! pulling for you brother.
~ SkyCatcher

Lynn K · « **Reply #37 on:** March 02, 2015, 03:49:44 pm »

Hi Dave

As you have advanced cirrhosis you are not even a candidate for Viekira Pak which only is ok basically Child Pugh A well compensated cirrhosis.

I got tired of the run around back and forth between Express Saying they didn't get faxes my doctors office had sent. To the phone answerer people who could not pronounce the names of the meds or my medical condition.

In frustration I commented on their article which in the long run was basically a stroke of luck the email gets you to people who know what is going on and can truly help the woman spoke with has been my advocate on the inside a couPoe of times now. Her job title is Express Scripts/Accredo supervisor she has been great.

If you want to let the wheels spin a while more and let the process try to work that is fine but if it still isn't working for you try the email nothing to lose everything to gain

Good luck

dogdave · « **Reply #38 on:** March 02, 2015, 04:04:30 pm »

Lynn, I will not let the wheels spin for very long. I will use the email address soon if when the physician's assistant calls me with the denial confirmation. This all happened today so I getting myself together.
Thanks for everyone's support and I will let you know the outcome.
David

Lynn K · « **Reply #39 on:** March 02, 2015, 05:29:27 pm »

Good luck

dogdave · « **Reply #40 on:** March 05, 2015, 08:56:04 am »

Lynn, I have sent an strongly worded email to address provided by you yesterday. While the individual I talked with was empathic. After reading the denials he stated that the denials were an Insurance company issue, not pharmacy issue. However he is looking into the matter with my GI's office team and the insurance company. He will be in touch next week. Thank you for your support in the matter.
David

sapphire101 · « **Reply #41 on:** March 05, 2015, 11:11:07 am »

Skycatcher: Did your meds arrive? It was tricky for me when they came because FedEx arrived 3 hours early from the arranged time and it was just a stroke of luck that I happened to be home. I too started the next morning after arrival and for you that would be today -right?. CHEERS! and don't forget the water chaser. I have been going through a case a week.

llory86: any updates on your dad for us? I am awaiting my first labs and am on pins and needles in anticipation.

dogdave: Hang in there bro. From my first doctor appointment to medication arrival it took two months and that was with major advocating on my part and assistance and advice from this forum. 2015 is our year and one way or another you will get your treatment.

llory86 · « **Reply #42 on:** March 05, 2015, 01:09:30 pm »

we usually get the lab results on Friday. Just to let you know so far there are no sides to report. Asap i'll have them be sure I post it. There are so few news on this drug that is a shame don't share how it goes. I know how knowledge brings relief to people who are suffering from disease, fear of the unknown is horrible at least that'is true for me and my father.
All the best

dogdave · « **Reply #43 on:** March 05, 2015, 02:02:26 pm »

sapphire101, it's been since May last year that I been trying for this treatment. However this letter has produced some results. My GI's office called and said the letter triggered an appeal from the insurance company. My finger's are crossed. Thanks for the support!
David

dogdave · « **Reply #44 on:** March 05, 2015, 02:30:46 pm »

llory86, I understand your frustration in your lack of knowledge of sides. Perhaps your reporting yours sides effects are with Viekira will help other understand theirs. I was prescribed the same but was denied by the insurance company. Here hoping that there are few sides and your treatment is successful!

Skycatcher, hope meds arrive safely today, Good luck!

David

sapphire101 · « **Reply #45 on:** March 05, 2015, 02:35:07 pm »

@dogdave
WOW you have been fighting the paper pushers since May? I would be crazy by now and you must be a very zen spirit to keep as calm as you seem in your posts.

2014- Last year was pivotal for approvals for the pharmacy companies to go forward and 2105 -this year, is the year for all of us to get our treatment. Walls will fall down, prices will drop, and you WILL get your medication.

dogdave · « **Reply #46 on:** March 05, 2015, 03:06:30 pm »

I am getting impatient and crazy, otherwise i wouldn't of wrote the letter. The Fibroscan indication F4 liver cirrhosis is an big motivator to get treated. I was in zen mode before, not now! I try not to make sick people sicker by whining, too much!

David

skycatcher · « **Reply #47 on:** March 05, 2015, 06:25:25 pm »

Hi Sapphire, David and everyone! Big Thanks for asking about my meds. Really appreciated. Yes indeed they arrived yesterday afternoon and I started my day 03/05/15 with Harvoni. My partner did a drum roll and pop goes the magic pill... (and a BIG glass of water).

With Harvoni dehydration is a big factor as everybody has been reading all over the post. The Pharmacy Lady said water or non-caffeine beverages are critical to staying hydrated. (Dehydration can lead to headache.) I am a coffee drinker ( my 2 cups a day ) so she said if I have a coffee then drink a glass of H2O. And all throughout the day, decaf tea, juice, water. Also no dairy or vitamins with breakfast. The minerals of dairy and of vitamins bind with Harvoni and can sort of coat or block or possibly reduce it's effectiveness. I have to be careful about the tea also.(Nothing too exotic) I found a nice ginger lemon grass and green tea plus a few fruit flavors. I can have dairy and take my vitamins after 4 hours but I think I will just wait until evening.
My favorite thing these days is this really good juice I get in the grocery store made by Ocean Spray "100% Juice". No sugar. It's great. If I want a bubbly thing I add soda. But mainly I drink good ol' H20. Today I have been pushing it too.

I also ask the Phram Lady about ginger because over the last several weeks I have been feeling kinda bad after eating supper and so I have been drinking a cup of Ginger tea. (It aids in digestion). She checked several places to make sure there was no interaction but said that the ginger tea was OK. For what it's worth I do feel some better after drinking the ginger tea just sayin'.

So Thanks. So far so good.

David sounds like you are doing the right thing. Let them know you are there -- in a positive way.

llory86 sound like your Dad is doing better.

~ Skycatcher

Red Hen · « **Reply #48 on:** March 05, 2015, 06:38:01 pm »

Hi, all.
Ilory 86, I think sometimes care providers are hesitant to bring up possible side effects because they don't want to give us preconceived ideas about what we might or might not experience. Ribavirin is one nasty drug, in my opinion, but not everyone has the same problems with it.
Skycatcher, glad you started treatment! Hooray!
David, I'm wishing you the best. Not an easy path. Hope they send you the darn meds.
Stay hydrated!

Red Hen · « **Reply #49 on:** March 05, 2015, 06:40:58 pm »

Hi, all.
Ilory 86, I think sometimes care providers are hesitant to bring up possible side effects because they don't want to give us preconceived ideas about what we might or might not experience. Ribavirin is one nasty drug, in my opinion, but not everyone has the same problems with it.
Skycatcher, glad you started treatment! Hooray!
David, I'm wishing you the best. Not an easy path. Hope they send you the darn meds.
Stay hydrated!

Red Hen · « **Reply #50 on:** March 05, 2015, 06:43:11 pm »

Shoot. I don't know why sometimes things post twice. I apologize.
David, my heart goes out to you.

skycatcher · « **Reply #51 on:** March 05, 2015, 06:59:40 pm »

Thanks Red Hen!
You can post as many times as you want

~ Skycatcher

dogdave · « **Reply #52 on:** March 05, 2015, 07:45:26 pm »

Thanks all for the support and best wishes. I found the right place. Glad your meds are here Skycatcher. Also the bit about diary, wonder what I'll have do about my morning bowl of cereal... maybe get almond milk. Hydration is key! I guess my verdict will come in next week.
David

Lynn K · « **Reply #53 on:** March 06, 2015, 04:03:45 am »

Hi Dave

Hummm dang. The denials for me were coming from express scripts they never said it was from my medical insurance.

I did see they had me as a partial responder to Sovaldi which was not correct. I did respond to Sovaldi Olysio I was UND at 4 weeks and EOT but relapsed 12 weeks post. So anyway express scripts were apparently denying me for the wrong reason.

Personally I think it is all really arbitrary and makes little sense i seems like a game we are unwilling players

Good luck

dogdave · « **Reply #54 on:** March 06, 2015, 05:56:32 am »

Lynn, my GI said that one Insurance company would ask for a fax to be sent with information. After no response, he'd call again was told he was missing certain pages. he resent it and they still stalled. After realizing that every fax he sent was missing the same pages, he called them out. They would send the drug the next day. I believe it is criminal how this is being played out. The drug manufacturers are just as bad because of the high fees they charged. I understand things are not free, but 1125 dollars a pill? Really!
David

llory86 · « **Reply #55 on:** March 06, 2015, 08:46:01 am »

Results at the end of 6 weeks on Viekira + RBV:
5 week 6 week
Vl Rna <15

??
Ast 35 28
Alt 23 18
Alb 45,9 46,1
Bil tot 1,6 1,5
Plt 100 116
Wbc 5,2 6,4
Rbc 4,10 3,97
Hg 14 13.7
Well, that means 5 weeks and still detect
I am hoping for the best

dogdave · « **Reply #56 on:** March 06, 2015, 09:11:29 am »

Yeah, lory86,

Sounds good so far! David

skycatcher · « **Reply #57 on:** March 06, 2015, 06:44:34 pm »

Greetings All!

My breakfast routine has done a two step with the dairy embargo. So my a.m. cereal of choice is oatmeal (the old fashion variety), until yesterday, with milk and half n half in the café 'olé. So no dairy means something else to make these items work well.

I got started on oatmeal for breakfast after meeting this guy who had experienced a major heart attack and had heart surgery (about 20 yrs ago). At the time that I met him at the workout facility he was so fit looking and worked out regularly 3 Xs a week that I would never had pegged him for a heart attack survivor. He told me that was his wake up call and once he got out of the hospital he changed his routines and started having oatmeal everyday for breakfast. And using canola oil for anything requiring oil. Working out diligently. He believed adamantly that these 3 things restored his life. Brought him to his excellent state of health.

For me frequently over these many years and the last 2-3 almost always have those Quaker Oats. Normally I add dried cranberries, almonds sometimes, cinnamon or nutmeg, honey or brown sugar, and now, my milk substitute, is a diced pear, yesterday, or diced apple today. Maybe applesauce tomorrow. Blueberries Sunday...

Honesty David I was stunned and did not think to ask about almond milk or rice milk. I know that almond milk is very high in calcium -- which is a mineral. But I tend to think of these two products as having lots of minerals in them. I don't know if this is correct but until I can get through to the Rx lady I will just go this course. Fresh fruit is better for me anyway. I love my oatmeal...
For coffee the coffee flavor stuff -- some has no milk products any where near them -- I found one of these to use for now ... ( sob. I miss my half n half....) So for 3 months I can substitute different things. I think I can make it

~ Skyw222222222222221` <----- My cat's comment

~ Skycatcher

dogdave · « **Reply #58 on:** March 06, 2015, 07:36:44 pm »

There is almond milk, also coconut milk and soy milk. Almond milk I was introduce to by a friend with Lactose intolerance. A nurse I told today said she like coconut milk. My problem is ice cream and I do like cheese. From what you said, there is a 4 hr waiting period after taking the pill, am I right?
David

skycatcher · « **Reply #59 on:** March 09, 2015, 04:17:25 pm »

Hi David! yes the Rx Lady from the specialty pharmacy said no dairy and no minerals because they can bind with Harvoni and lock it up or bind or decrease its effectiveness. That is correct for at least the first 4 hours after taking it. So I am OK skipping the dairy until evening and for now I am skipping the vitamins. The oat meal with applesauce and berries is actually very good. I like all of those alternatives for the milk but I know they all have relatively equal amounts of minerals (compared to milk) and so that is my concern until I can speak with my rep. about this issue. I am taking no chances till then.

~ Skycatcher

dogdave · « **Reply #60 on:** March 09, 2015, 05:12:33 pm »

Hey skycatcher, bought some almond milk this week, can't tell the difference.

Lynn K · « **Reply #61 on:** March 09, 2015, 05:22:18 pm »

That is the first I have heard about milk. I live on cereal I haven't seen anything about in the prescribing information sheet included with Harvoni just a lot about avoiding acid reducing medications antacids like tums or PPI's like PRILOSEC or NEXIUM and h2 antagonists like Pepcid or Tagamet

But nothing about milk gonna have to research that one.

Edit
Ok I have zero about milk maybe they were thinking about the herbal milk thistle which many take to try to help the liver. But I can't find any reason not to drink milk or use dairy

Red Hen · « **Reply #62 on:** March 09, 2015, 07:04:45 pm »

I'd never heard about milk or other dairy products being a problem. Did hear that sugary drinks were not a great idea.

kate0b1 · « **Reply #63 on:** March 10, 2015, 06:19:48 am »

agh its to late for me (two days left) but I'm not giving up my milk, it was hard enough to give up whole milk to 2%. thats as far as i can go lol

kate

dogdave · « **Reply #64 on:** March 11, 2015, 08:06:40 am »

Status report, for Harvoni Hep C treatment. Have got a appeal in the works. Accredo called me back on this. Have not heard a thing further on this matter though.

Went to my urologist. Had a complex cyst for over 10 years, and this year it has significantly grown with additional smaller cysts in my kidney showing up. Basically I was told to have my kidney removed, because of the irregular mass growth might indicate cancer. I asked about Hep C treatment and he couldn't respond. If I get approved for Harvoni, I think that I will do that first. Agghhhh!

PS Also, type 1 diabetic, make me hesitate and think which is worst 1 kidney or cancer. Biopsy not an option I don't think as complex cyst is woven amongst vital kidney structure.

Red Hen · « **Reply #65 on:** March 11, 2015, 06:53:01 pm »

David, that is upsetting news. I don't know what would be the best thing to treat first but hope you find a good doctor who can guide you.

dogdave · « **Reply #66 on:** March 11, 2015, 07:43:08 pm »

I should hear from him tomorrow, today I had the dye I.V. This was a curve ball. I have been monitoring the kidney for over 10 years. Didn't expect any changes. I still am going for both. Perhaps the kidney would be first. Will talk to the specialist soon. I didn't even have a chance to think of all the questions I have now.
Thanks for your concern.
David

sapphire101 · « **Reply #67 on:** March 12, 2015, 12:07:40 am »

Dogdave if possible I would do both hcv treatment and remove the kidney that would be my first choice. If you can only pick one then I would remove the kidney first. Cancer is a raging fire and hcv is a slow burn. Hep treatment can wait until you figure this out and maybe once you are clear from the kidney detour the appeal will be approved.

Please keep us updated.

dogdave · « **Reply #68 on:** March 12, 2015, 07:28:15 am »

My thoughts also. I expect to hear from my urologist today (hopefully). One other issue is type 1 diabetes and kidney function. I need to have my urologist contact my endocrinologist also.

skycatcher · « **Reply #69 on:** March 13, 2015, 04:21:48 pm »

Hi All!
The Rx Lady was very explicit about avoiding milk and dairy products and minerals for the first 4 hours after taking the Harvoni. She said indicators were a possible binding effect so I am following her advice to a T. All of my substitutions are working out great. I did get some of the Rice Milk -- the organic original -- because as I compared this to the others -- almond, soy, coconut -- it listed the lowest amount of additional minerals. All of the flavored ones were surprisingly higher in various minerals that were listed like calcium. And after waiting so long for an effective treatment I "ain't gonna do nothin'" that will possibly interfere with the slaying of the HCV beast.

You know if your rep did not say anything about this then don't worry about it especially if you are near the end of treatment or completed it. It is what it is. Be confident.

Ever since Harvoni broke it seems that things have been changing and evolving. After all, clinical trials aside, we are barely at what 6 months with this medication??? I am sure there will be some tweaking as time goes along.

David good luck to you in your process.

~ Skycatcher

Lynn K · « **Reply #70 on:** March 13, 2015, 04:34:26 pm »

Well I sure hope it is not a problem as like I said I live on milk and cereal a lot and all I have heard close to that was antacids interfere with the absorption of the ledipasvir component of Harvoni

Ledipasvir requires a normal acidic stomach acid condition in order to be absorbed. If the stomach pH level is too high so not enough stomach acid this will result in lowered blood levels of Ledipasvir.

As this is my 5th treatment and I have cirrhosis I can't really afford a relapse.

dogdave · « **Reply #71 on:** March 13, 2015, 05:13:46 pm »

Hi everyone! Good news on the Kidney front. A renal IV dye CAT scan yielded a result that the monitoring will be continued 2x a year instead of just once a year! Urologist said go for the hep c treatment. Called the appeals at Anthem, after an hour, the rep said there was no appeals going on. Thats after my GI filed a new one.

? The mistake Anthem made was they denied me Harvoni, then denied me Viekira. The denial stated clearly the reason I was denied Viekira is because I hadn't tried Harvoni yet. That I think is the smoking gun. Anyway the person was compassionate and she set in the motion the process of getting Harvoni. She talked to my GI office twice, had the necessary paperwork and is following it. I gave her the info of my Accredo person and I have her direct phone #. She spent 3 hours on this to day! This day was fruitful, but I been here before and soooo I am guarded!
Fingers crossed.

Red Hen · « **Reply #72 on:** March 13, 2015, 06:30:07 pm »

David, great news! So glad you kept trying and now things are coming together for you. Thanks for letting us know.

Lynn K · « **Reply #73 on:** March 14, 2015, 05:21:10 am »

That is great news Dave!

Got my fingers crossed hope things work out for you soon!

dogdave · « **Reply #74 on:** March 14, 2015, 05:50:54 am »

Thank you Lynn, also everyone else. I hope your treatment continues to be successful. I have read the milk issue and I will pay attention that if I get treatment. 5 more days and I hope to have an answer myself.

skycatcher · « **Reply #75 on:** March 16, 2015, 04:42:42 pm »

Hi Everyone!
Lynn I do drink milk but to be cautious I wait until evening 10-12 hours later. My insurance co is transferring to their specialty pharmacy (CVS Caremark) and I set that process in motion today so it maybe that I will have someone to speak with there. The other pharm Lady is impossible to get in touch with....
But no matter I am just being cautious.

To Everyone in Health ~ Skycatcher

Lynn K · « **Reply #76 on:** March 17, 2015, 02:03:47 am »

Asked my nurse today about the milk question she said maybe not to wash down the harvoni with a gallon of milk but other than that no worries

skycatcher · « **Reply #77 on:** March 17, 2015, 02:44:17 pm »

Well good! No worries then...

~ Skycatcher

dogdave · « **Reply #78 on:** March 19, 2015, 04:04:20 pm »

Well everyone, I got a call from Accredo stating that I was approved for Harvoni. I was well informed by both Accredo and Anthem's appeal. They walked my doc through the process which included a peer to peer conference with Anthem.

I thank Lynn for her tip, hope I'm not premature as just because the drug shows up on the my queue on the web it doesn't mean it will go away as in the past.

I am so ready to get on with this!

David

dogdave · « **Reply #79 on:** March 20, 2015, 02:46:22 pm »

Hi everyone,

Well, yesterday my approval came through, today I just got off the phone with Accredo nursing staff giving my meds and getting instructions. I am getting a six months treatment of Harvoni, finally. I get my Harvoni tomorrow and all I have to do is receive the instruction from my Doc to start. I sure he wants me to do a baseline lab. Hurrah!

David

Red Hen · « **Reply #80 on:** March 20, 2015, 03:27:09 pm »

Congratulations on your good news, David!

dogdave · « **Reply #81 on:** March 20, 2015, 03:38:16 pm »

Thank you! I will start treatment next Friday and have an appointment with the doc for instructions. Hope your treatment is going well!

David

Lynn K · « **Reply #82 on:** March 20, 2015, 06:39:38 pm »

Fantastic news David!

I have a cold right now feel and like crud and the Riba I am sure is now helping at all.

But I have just 45 days to go so hanging in there.

Wishing you good luck and smooth sailing on tx!

dogdave · « **Reply #83 on:** March 20, 2015, 07:15:08 pm »

Thank you Lynn, it's interesting that I've dealt with a host of issues with the Accredo supervisor. He was 1st class. Also a sub-note the appeals rep I spoke with last week did the heavy-lifting to get all the paperwork, testing done and made it happen. After everything was done, my doc got a call from Anthem and asked them if they wanted to start a appeal on my case. One hand doesn't know what the other hand is doing over there.

Who am I to complain, my script is approved. I got the call from the nurse and talked the pharmacist and my start date is fri a week from now. This forum helped me get the job done! Last issue for what it's worth, Milk is not an issue according to Accredo, however Antacids are, which I can take 4 hours after the pill. It not the calcium, but it is the aluminum-mag@#! stuff that is a problem.

Hope you feel better Lynn, that Ribavirin is toxic stuff according to the GI I had previously.

Have a good weekend and recover!
David

skycatcher · « **Reply #84 on:** March 21, 2015, 11:08:55 am »

Congratulations David!

Long over due! I am excited for you and your recovery from HCV. Like the new pic -- somebody is having fun in the snow....

~ Skycatcher

dogdave · « **Reply #85 on:** March 21, 2015, 01:42:56 pm »

I do Scottie rescue work. He is one of my rescues. He loves the snow, unlike me who has to move it. I smile when I see him running around in it!

I still can't believe it happened to me. I start next Friday after a doctor's visit.

Thanks for your congratulations! Hope all's well with you!

David

Else · « **Reply #86 on:** March 21, 2015, 05:01:30 pm »

Your perseverance is really inspiring, Dogdave. Huge congratulations!!! You show what can be done if you continue to advocate for yourself no matter what. I do think there are some number-crunchers out there counting on people to give up in frustration.
Thank you for the big smile you put on my face!!! And good on ya for your work with Scottie's, btw. They're a tenacious bunch too, aren't they! Looks like you fancy a breed that suits you!

dogdave · « **Reply #87 on:** March 21, 2015, 05:06:19 pm »

Thank you, Else! Had Scotties for 25 yrs now. Love them. Hope your treatment is going well.
David

Red Hen · « **Reply #88 on:** March 23, 2015, 02:34:44 pm »

Love the Scottie photo! Glad things are going well, David.

skycatcher · « **Reply #89 on:** March 23, 2015, 10:33:20 pm »

Hi All!
David that is so great that you help out furry four year olds. A few years back I rescued two strays that showed up. They were sisters about 7 mos. one a blonde -- she was husky/chow and her sister, the redhead -- who was chow/husky. We became friends and they got comfortable and as I came home from work one day about a month later my blonde girl was exceedingly happy, jumping and prancing about and proud of herself because she had brought home a pup (5mos) that looked like a lab mix but could run like the wind. The vet and I decided he was a lab/greyhound. A lasting friendship of 15.5 years ensued. I am a much richer person because of these three magnificent beings becoming apart of my life.

The little guy in the picture looks like he is a happy little fellow... Scotties are neat dogs.

~ Skycatcher

dogdave · « **Reply #90 on:** March 24, 2015, 05:19:08 am »

Hey Skycatcher, I start my treatment on Friday. I am anxious to get going and to see if I tolerate the treatment. There are so many meds that I can't take because my liver is compromised. i.e.anti-depressives, fortunately dog have the same effect as anti-depressives. Glad to hear that I am not the only one that rescues dogs.

David

skycatcher · « **Reply #91 on:** March 27, 2015, 01:59:50 pm »

Big Day!!!!

Just create a time of day -- a ritual if you will-- to taka your med! To make it easy for me so I don't have to worry about taking my med I have set my phone to pleasantly remind me of that.

Good Luck David! ~ Skycatcher

dogdave · « **Reply #92 on:** March 27, 2015, 02:23:11 pm »

There is an app for that. Very excited. Doc said no one has failed yet. He said a man who was ready for SSI changed his mind is going to work another 10 years. i will be content if it works and the constant fatigue goes away. Thanks for great advice!
David

Philadelphia · « **Reply #93 on:** March 27, 2015, 04:25:07 pm »

Good luck Dave

skycatcher · « **Reply #94 on:** March 27, 2015, 04:32:24 pm »

Alright David! Class of 2015 is growing...... Skycatcher

dogdave · « **Reply #95 on:** March 27, 2015, 07:01:51 pm »

10 hours and no sides, but definitively feel like I took a medicine. Thanks to all and I hope every one has continued success!
David

Else · « **Reply #96 on:** March 27, 2015, 09:08:06 pm »

Best to you, Dave! Those pups of yours will keep you whipped into shape!

Red Hen · « **Reply #97 on:** March 28, 2015, 06:35:17 pm »

Hi, everybody! David and Skywalker, I have 2 rescue dogs. One is a long-haired chihuahua/pomeranian? mix and the other is a 5 lb. short haired chihuahua who survived some pretty nasty abuse before I got him. The best way to deal with symptoms from Viekira Pak was to play with my dogs. I bet Harvoni is the same!

dogdave · « **Reply #98 on:** March 28, 2015, 07:02:27 pm »

Absolutely, dogs are good. Lousy 1st night sleep. I'm hoping tonight will be better. The euphoria of starting this treatment is wear off. I getting set for the long haul.
My best,
David

skycatcher · « **Reply #99 on:** March 30, 2015, 04:27:03 pm »

Hi Red Hen and David and everyone!
I think animals are essential through out life. My beautiful dogs are gone today but my heart has been so enriched by having then in my life. Today my best friend is a beautiful kitty girl that we -- what else? -- rescued. I think of her as being pink and grey in color. She is a real character! But please tell me, what critter isn't when one decides to rescue? They are all so-o-o very special. My other half is not very much of a dog person but when we met the realization that my dogs were a very big part of my life, my children and were here to stay, and any kind of separation was out of the question was very evident very quickly. Either me and my 3 beautiful dogs or see you later. My partner, still not a dog person today, none the less was great with them and always very responsible and loving towards them.

Red Hen one of the first things I read that you posted was about taking time to enjoy your life. The outdoors, your puppies, family, in short : Life. I agree 1000%. I do the same. Very important.

David I had read a few times here that different people had trouble sleeping the first day or two. I have to admit I did too. The very idea that I might become CHCV free just blows my mind. But after that first day or two I have been sleeping like a baby for the most part. Be sure to drink lots-o-water. Can't stress that enough...

Just remember it's one day at a time. Each day is different with new possibilities and promises.

~ Skycatcher

dogdave · « **Reply #100 on:** March 30, 2015, 07:38:55 pm »

Thanks Skycatcher, I have been drinking a lot more water. I am trying to get past that edgy feeling that comes from lack of sleep and when you feel that you have new chemistry working in you. Was going to whine about this until I started reading other posts of sides that seem to put my problems in perspective.

I also project or try to predict future what ifs, causing me sleepiness in the wee morning hours. I generally can get to sleep in the evening.

Animals sure do help!

My best to all! David

skycatcher · « **Reply #101 on:** April 01, 2015, 12:49:38 pm »

Hi Ya Dogdave!
Are you sleeping yet? I know what you mean by the new chemistry going on.
So far for me it has been very slight -- a new chemical taste (minor) at first. The excitement is real. we should all celebrate this incredible medicine and I know we all do.

I can not stress enough the very real need to drink lots-o-water!!!!
For me it is as though my body seems to need mega H20 (and the funny thing is I have always drank lots-o-water). And other liquids (no caffeine) .... For my breakfast I have slowly inched in Almond milk with my oatmeal. Between the fruit, nuts, spice, applesauce and now almond milk I have a very righteous breakfast.

The biggest thing I have noticed has been the headaches that started at about 10 days. Checking with my Doc's office they said Advil was OK (not to exceed 2000mg a day). Some days it works better than others. One thing I did in addition to Advil, I massaged my head especially around my temples and after having very intense pain all day that helped so much that the headache went away.
The second thing I found that (possibility) worked was with my morning coffee. I drink (1) bottle of water upon waking -- 16.9 or 20 oz. First thing. Then coffee. What I've started doing is sip of coffee, followed by a sip of water, etc. It may seem silly but for two days now no headache. (I am hopeful today...)
Yesterday for the first time I did not have one. From the what's it worth Department the nurse called from the Pharmacy to check in with me and she did say that some people's headaches easy up or go away after awhile. Maybe that's what's going on as I would think the body acclimates to things.

The other thing I've started doing is only having 1 cup of coffee instead of 2.

What I am tending to think about the Harvoni is a demand for water, by the body, to help it rid itself of the debris of the dead cells and those by products and to flush out and remove the dead virus cells. Thus, aqua.

I know with your other issues you know what works best for you food wise especially the diabetes. With water you can't go wrong.

~ Skycatcher

dogdave · « **Reply #102 on:** April 01, 2015, 02:09:39 pm »

Hey Skycatcher, last night was an awful long night with waking up every 2 hrs or so. About 3:30 the dogs decided it was time to go out so that was that. Hanging on to the hope that this is only temporary, but suspect it might not. I will wait a week till next week to call the doc's office. I keep thinking of the big picture of being CURED... a power nap helps when I can get one.

The other thing I notice is that as a type 1 diabetic, I use insulin exclusively. I have been noticing a trend of lower blood sugars. It feels more intense with Harvoni, although my doc says there is no interaction with Harvoni and insulin it seems to be related. I can adjust my pump to deliver less insulin if this continues. I like the lower bgs., but they borderline on be dangerous. Fortunately my pump and continuous glucose monitor alerts me. Headaches aren't much of a problem yet , just sinus heads in the morning that were there before treatment.

I also suspect that water is a culprit for waking up frequently. All things said, I want to be cured. Will adjust and find a work around for this problems. Tomorrow will be the end of my 1st week, just 23 to go!

Thanks for your input and also I appreciate your concerns... hope all's well with you!

David

Red Hen · « **Reply #103 on:** April 02, 2015, 09:43:45 pm »

Hi, Skycatcher and David and all! Love hearing about whatever keeps us connected to a more natural world. Gardening, hiking, animals...all good! David, I bet all the extra water is making you wake up more!

Hopefully, you can get back to sleep. Head aches sound very unpleasant, Skycatcher. I did not experience them as a symptom of the Viekira Pak with ribavirin. I was too busy itching! Wishing you a Happy Easter.

skycatcher · « **Reply #104 on:** April 03, 2015, 06:41:23 pm »

Big Hello Dogdave and RedHen and everyone!
Yesterday I got my 4 wk. labs and went to the grocery store. It did me in for the day. Such is life though.

David as you mention the frequent waking I realized that happened to me also. A solid week of waking up every 1-2 hours. Having to pee. And pee. And pee..... The good news is this t-o-o will change and stop. Or at least for me it has. Now I am up once or twice a night. I was up even when I adjusted the fluid in-take to stop drinking at 8PM. I really think it is my body doing what it needs to do by getting rid of the toxins and by-products of the Harvoni. And those dead HVCs.

And so far I have not had a headache since April 1st!!!!

The headaches did not kick in right away until about 10 days but for now have stopped! I am very glad of that and just to let you know you will get through it.

Keep a close eye on your blood sugar and who knows maybe you will be able to adjust your med level. I have heard of other people changing something in their life and reaping a benefit like lower blood sugar levels.

RedHen you got to do what a girl has got to do! Enjoy your life! How are you feeling these days? Were you ever really zapped or exhausted? That is how I found out in 1993. I am getting these little burst of new energy and I have great hope that I will just be exhausted from doing things that I want to do verses limiting myself because my energy meter is blinking "low".

Later ~ Skycatcher

dogdave · « **Reply #105 on:** April 03, 2015, 07:32:55 pm »

Skycatcher, glad your headaches have gone away. Headaches that I've had were sinus ones which happens anyway. One thing is that I am going to stop drinking fluid at about the same time as you. Last night I managed to get back to sleep after each time I got up to go. (5x). Through my 1st week and 23 more to go. Adjust pump's insulin level just a bit and and my bg's were higher. Just going to pay more attention. Also, made Chili yesterday and I was wiped out. Like you said, that how I found out in the 90's. I hope that when think done I go back normal. I am sick and tired of being sick and tired! Red Hen hope the itching goes away! Try Benadryl or as the doc about it. I think I read that somewhere.
Hope everyone has a good weekend!
David

Red Hen · « **Reply #106 on:** April 06, 2015, 07:15:25 pm »

Hi, David and Skywatcher and all. Skywatcher, glad the head aches are gone! David, I completed treatment almost 12 weeks ago. Wednesday is my 12 week post treatment exam and blood work. I'm feeling nervous about the results. I have been HCV undetected since my 3rd week of treatment but still had to do the full 12 weeks with ribavirin. I took Benadryl every night for pretty much the whole time and for awhile after. It takes time for the ribavirin to leave the system. But, anyway, I keep feeling better and better! As for being tired, well, I also have pernicious anemia and have to get a B-12 shot every month. So, I was used to being tired and couldn't tell what might be HCV and what might be the usual anemia. (Pernicious anemia is caused by lack of a stomach enzyme to process B-12, not a blood anemia.) The Viekira-Pak with the ribavirin made me feel Exhausted some days and fairly o.k. on others. Now, there are times when I'm tired but have much more energy most of the time. One interesting thing about the benadryl is that my Primary care doctor, ( not the infectious disease clinic doctor who recommended it ) was not happy that I had taken benadryl for so long a time even though I just took one o.t.c. pill each night. She says there are much better drugs for itching because benadryl is linked to Alzheimers. So, there is some conflict about that. Long post here! Hang in there, say "hi" to your dogs and cat for me and wish me luck! I'll share results when I get them.

dogdave · « **Reply #107 on:** April 06, 2015, 07:32:27 pm »

Fingers crossed for your Wednesday's visit, Red Hen.

Headaches are there for me now, but it's not any different from other times of the year with pollen out there. Stomach is a little touchy and I still wake all night. Trying to stick to water all day long and laying off at night. A week and a half done and 22 and 1/2 to go. I am schedule for lab work between every 28 pills/1 bottle. So it will be awhile. I know waiting is the worst thing to do.

Again I hope your continued success! Dogs help me smile. They were howling like wolves at chickens on the TV to day!
David

skycatcher · « **Reply #108 on:** April 08, 2015, 12:49:13 am »

Hi RedHen! Hi Dogdave! and all.
Thanks for explaining about your anemia -- I was scratching my head for a moment and thought I would have to look it up. Good thing you are taking B12. I know that has to help.
Yes I am still headache free. A new trend I am very happy about. I keep getting small bouts of energy which so far is followed by exhaustion but that is because when energy strikes I do stuff. Still very exciting. I just did labs Thursday and as of right now my liver enzymes are back to normal.

I haven't gotten the viral load back yet and see the PA on this Thursday to discuss everything. But my liver feels slightly enlarged still. I've been living with CHVC for 44 years probably became infected in 1971. I figure it has been such a part of my "landscape" for so long it will take time for my body to "reacquaint" it's self and blossom without the CHCV.
That's my theory...
The info about the Benadryl from your Doc is a scary little piece of news. In general I don't take things unless there is a good reason. That is something I will check with my Doc about next time I see her. But you know if it helped you get through being able to sleep and not itch to pieces I would think of it as short term use personally.
David I also noticed a slight heaviness with my heart. Probably at about 2-3 weeks. I never had any arrhythmia but it was like my heart "felt" like it had slowed. I have a little meter here at the house and it reads O2 and heart beat. We got it to check for exercising. Even though it felt like my heart had slowed down it was not any slower then my normal slow heart beat. I have a slower heart beat then most. But for about 3 days I was aware of it. I have not noticed it since. It has been one more symptom that came and went. Knock on wood....
Sounds like you had a chorus going on David....
~ Skycatcher

skycatcher · « **Reply #109 on:** April 09, 2015, 09:02:17 pm »

Hi Dogdave, RedHen and all!!!!!

I went to the see the PA at my Doc's office today and I am nondeductible and liver enzymes normal!!!!!

I have just completed week 5 today looks like 3 more to go. I am starting to feel normal but only in small bursts of energy. What's going on with you?

~ Skycatcher

dogdave · « **Reply #110 on:** April 09, 2015, 09:59:17 pm »

Hi Skycatcher, great news! I am settling for the long haul. Lotsa water, a nap during the day and have been getting headaches. Your good new is helping me with my resolve to get through this treatment! Two weeks done, Twenty-two more to go! Hope every one else is well!

David

Philadelphia · « **Reply #111 on:** April 09, 2015, 10:11:17 pm »

I'm into my 3rd week and closing in on the end of it. Apart from worrying bilirubin levels (see my thread for details), everything here is going okay. I felt slammed at the end of week 2 but Easter off has made all the difference. I feel human again. Human enough tolerate a flight to Sydney, scans, blood tests,public transport, trains, buses and a fair bit of walking.

skycatcher · « **Reply #112 on:** April 10, 2015, 12:53:56 pm »

Hey Dogdave, RedHen, Philadelphia, and all!

David you have the right attitude! Just got to take it one day at a time. I am so sure that your pups help throughout the entire process that they probably all need extra treats. I am amazed at these multitude of mostly minor side effects (except for those bad headaches). It all seems to transition from one place to another. Very amazing to me.
Looks like I will only be treating for 8 weeks as everything is excellent. The PA I saw yesterday was going to check on it and get back to me. Personally I don't trust the 12 week end point and will get another viral check 6 mos. out. I feel much better about that.
David no doubt you will experience some glitches here and there but like you say 22 week count down is on.

RedHen can you take B12 tablets? Or does your system not absorb the B12?

Philadelphia do you live in Australia? Are you on Harvoni?

~ Skycatcher

dogdave · « **Reply #113 on:** April 10, 2015, 01:22:53 pm »

Skycatcher,

Can't get that far ahead in my mind. Like before I was approved and even after I was approved, I only believed it when I had the pills in my hands.

Headaches are mostly in the morning, like 2 or 3. Most of the time they go away after I get up. Had an all day one couple of days ago. I look forward to my first labs. PA suggested that I do it between bottles, after 28 pills, then labs then opening a every new bottle. Markers he's looking for I guess.

Best to everyone.
David

Red Hen · « **Reply #114 on:** April 11, 2015, 07:33:32 pm »

Hi, all. Skycatcher, I can't process any B-12 orally but only if injected into my bloodstream. My mother had the same condition. $:-\$

skycatcher · « **Reply #115 on:** April 12, 2015, 11:37:55 pm »

Hi RedHen!
Bummer... So sorry to hear that. Do you inject yourself with B12 or do you have to go to a medical person to get a shot of B12? Sorry to be so-o-o ignorant on this.
I've had injections of B12 in the past and sure does make a difference.
~ Skycatcher

Philadelphia · « **Reply #116 on:** April 13, 2015, 12:22:53 am »

Sky catcher, yes to Australia, and no to Harvoni. I'm on Viekira Pak through a compassionate access program. None of the new DAAs have been released over here yet or if they are they are prescribed with INF

Lynn K · « **Reply #117 on:** April 13, 2015, 01:43:23 am »

http://mobile.abc.net.au/news/2015-03-19/australians-with-hepatitis-c-hope-drugs-will-be-approved-by-pbs/6333710

Australians with Hepatitis C hope new drugs will be approved by Pharmaceutical Benefits Scheme

The Pharmaceutical Benefits Advisory Committee (PBAC) last week considered five drugs for the government-subsidised PBS.

Their recommendations are expected in six weeks.

Philadelphia · « **Reply #118 on:** April 13, 2015, 02:39:31 am »

Yes they met in March. There's also been a parliamentary standing committee launch a inquiry into Hep C. Some great submissions,including from my specialist.

Red Hen · « **Reply #119 on:** April 15, 2015, 06:40:53 pm »

Hey, all! Glad everyone is getting meds, drinking water and persevering. I got good news today! 12 week post treatment labs came back HCV undetected! I'm very excited. So, you see, Viekira Pak may not be the top choice but it can be effective. I'll be checking in with you and want to say a special thanks to everyone who has encouraged me on this forum!

Lynn K · « **Reply #120 on:** April 16, 2015, 03:13:17 am »

Wow fantastic news glad you have been the trail blazer for so many coming after you on the Viekira trail!

Long_Haul · « **Reply #121 on:** April 16, 2015, 09:53:38 am »

Awesome Red, this is great news. Rejoice and enjoy, I am doing a HAPPY DANCE for you.

AL

Red Hen · « **Reply #122 on:** April 16, 2015, 06:58:00 pm »

Thanks, Lynn and Al. Happy dancing!

hepctreatnow · « **Reply #123 on:** April 16, 2015, 08:16:02 pm »

So happy for you red Hen!

I'm on my 2nd week and viral load and Ast and Alt have dropped dramatically already.

Else · « **Reply #124 on:** April 16, 2015, 08:47:17 pm »

That's great news!!!

sapphire101 · « **Reply #125 on:** April 16, 2015, 11:13:29 pm »

Hey I just discovered this post has a page two! So much to catch up on.

Now there are Harvoni treatments in progress here and some of the Viekira group too. Seems like Harvoni comes with a side of headaches and hunger. Viekira comes with a side of itchy skin and fatigue. We both get insomnia and the good news is that no matter what the side effects they are tolerable and we all get the same chance for SVR. Lots more new meds to follow soon.

Benadryl/diphenhydramine I have started it and yes I have heard that it is not good long term and once I reach end of treatment I will be done with it. It will be really weird the day I get to stop taking all these pills. A grand total of 14 daily if you count my mulitvites along with all the treatment.

ekaraena · « **Reply #126 on:** April 17, 2015, 11:56:51 am »

Greetings,

I am on Viekira and have had a great experience other than some issues with my skin. I am 10 weeks in and at 4 weeks was testing negative for the virus. I am genotype 1a and was diagnosed in 1997.

I was originally prescribed Viekira with Ribavirin but my doctor stopped the Riba after 1 week because it was causing issues with dizziness, depression and insomnia that I was not able to tolerate. But, the good news is that after removing the Ribavirin all of the negative side effects stopped. The nurse navigator I am working with told me that according to clinical trials, Viekira Pak is still 90% effective WITHOUT the Ribavirin.

I'm certainly not implying that everyone should forgo the Ribavirin, we are all different in terms of how we tolerate meds and many people do just fine with it.

In any case, just wanted to share that overall Viekira has been a breeze to tolerate, I have been able to work full time, exercise regularly, and have had tons of energy. In fact, I feel better than I've felt in years!! And finally testing negative for the virus after almost 20 years (And liver enzymes totally normal).

Best of luck and feel free to message me if you have any questions!

Raena

Else · « **Reply #127 on:** April 17, 2015, 12:03:35 pm »

That is fantastic news!!! I thought for 1a, it was Viekira Pak plus riba or nothing.

Congratulations on your recovery!!!

Red Hen · « **Reply #128 on:** April 17, 2015, 12:04:22 pm »

Thanks everybody! We all stand a good chance of SVR! We are lucky to be getting treatment now and not going through the misery of the old treatments. Sapphire, I liked your summary of side effects. I think the intensity varies from person to person. It is really great when you finally stop taking all the pills! I can't even bring myself to take vitamins now. Just don't want to take anything! ( Although I am taking Flonase now for seasonal allergies. And glad to have it. )

Oh, just saw post from Raena. Great to hear from you and glad things are going well! And "hi" to Else!

ekaraena · « **Reply #129 on:** April 17, 2015, 12:36:14 pm »

Quote from: Else on April 17, 2015, 12:03:35 pm

That is fantastic news!!! I thought for 1a, it was Viekira Pak plus riba or nothing.
Congratulations on your recovery!!!

I thought viekira + riba was mandatory as well, but my doc and the nurse navigator confirmed that there's still 90% success with viekira alone. I suppose the two are always prescribed in combination because the success rate is increased to around 95 - 97% with both.

sapphire101 · « **Reply #130 on:** April 18, 2015, 01:01:31 am »

Very interesting Ekarena and I have always wondered about Viekira Pak alone and you confirmed my suspicions. With out ribavirin it is a cake walk!
GT 1b does not need the riba and still has great SVR rates. No wonder our genotype 1b brothers and sisters hardly ever post. they don't have any reason to commiserate with anyone- LOL.

Bold move to forgo the ribavirin and my doc did discuss this option with me at treatment start. The plan was exactly as you outlined, if I could not tolerate Riba then we would drop it and continue on with only Viekira pak, but that it would lower efficacy rate. With only 4 weeks to go now I am soldiering on until the finish line.

I look forward to feeling good again soon.

Lynn K · « **Reply #131 on:** April 18, 2015, 01:14:59 am »

Hi ekaraena and welcome
Thanks for the update on Viekira and GT 1a

I found the reference from the Pearl IV clinical trial they tested 305 GT 1a patients with what they were calling at the time the 3D combo 100 patients with Riba and 205 without.

The result was 97/100 (97%) for the with riba group and 185/205 (90.2%) for the GT 1a without riba.

Good to know thanks!

skycatcher · « **Reply #132 on:** April 19, 2015, 04:58:11 pm »

Hi everyone! I had computer DSL line issues but everything is good to go (again...)
The price of living in the country.... or so it seems from time to time.

Congratulations RedHen!

Long time in the works but here you are!

Dogdave how is everything?

I am getting the 3rd month of Harvoni after all. I feel better about this.

~ Skycatcher

lonewolf · « **Reply #133 on:** April 19, 2015, 08:53:06 pm »

I started treatment- 12 wks. Viekira Pak +Ribavirin on 3-5-15. Previously treatment naïve. I am a 55 year old white male Genotype 1a, probably infected in the Army in Panama in 1989. I get all treatment at no cost thru the V.A. My start of treatment VL was 21.8 million ml. At 4 weeks it was undetected. I was scheduled to take Harvoni but my Dr. took one look at my high viral load and went with the Viekira Pak. He says its just as good if not better than Harvoni. He's the head infectious disease specialist for the VA in Mi. and has been treating Hep C since shortly after it was identified in 1989. So he should know. I've had some sides from the Riba but not too bad. My biggest side-effect now is that I'm hungry all the time. Could be worse, right? So I'm very happy with Viekira Pak and he says I'm well on my way to SVR. An early undetected is a very good sign. If you have any other question about Viekira Pak please feel free to ask. Thanks_Greg

sapphire101 · « **Reply #134 on:** April 22, 2015, 12:01:49 am »

Congrats on getting your third month Skycatcher. Great news and good job of advocating for yourself. One of the many wisdoms revealed on this forum is that we must not be shy about what we need to get well.

Welcome lonewolf.
Thank you for sharing all the information from your VA doctor. You started at a high VL of 21 million and went undetected at 4 weeks- that is amazing. I am a few weeks ahead of you on V pak and riba treatment. No hunger, but I do have insomnia and itchy dry skin. Some fatigue too. What ever it takes to beat this right?

skycatcher · « **Reply #135 on:** April 23, 2015, 01:36:54 pm »

Hi Sapphire! Hi Lonewolf! Everyone!
Well as it turns out I am not getting the additional 4 weeks. You know I've been living the experience of a fast moving ping pong ball with this last refill for about a week. The Doc prescribed it, the PA advocated for it, the pharmacy called to confirm delivery, then the guy from the other office of the pharmacy suspended the last refill, the PA went to battle for me, but because I am doing so great right now the insurance does not want to pay. (that is the gust of this little story

)
I do admit the very idea that a disease/virus that has been living in my bod for 44 years can be knocked out in 56 days of treatment is a little hard to fathom but I do believe it is the case. With that said, intellectually, I prefer the idea of longer treatment because of the sneaky nature of HCV but at the same time my body feels that that would be overkill. I am good with the final decision as it looks like the data is really starting to show this to be the case 8vs. 12 Harvoni.
I am a happy camper about this great news. I feel pretty good. I and slowly getting more energy back and for the first time in a few months I exercised yesterday. For the last million years every time I exercised my recovery has always been very exaggerated. My recovery time for a moderate to light workout would be 2-3 days of exhaustion and soreness. (Even when done on a regular basis.) So far today I do not feel exhausted and only very minor soreness! This is great!

What I am taking away from this is the power of the insurance industry and their clerks' who are managing our health care and are practicing medicine without the benefit of medical school but applying the numbers and data to our lives. Even with this said I know the insurance cos are getting slammed with the number of people seeking treatment but this is far less expensive for them in the long run verses all the larger payouts for procedures, testing and stuff. My partner was listening to NPR the other day on the drive home and heard a story about HCV treatment and the number of people on treatment this year is up to 160,000 verse last year of something like 20,000. (My numbers may be off a little) So the true power of the treatments are really staring to happen. Very exciting time for all of us.

So Sapphire Thank You for the "atta girl". It's been a battle of uncertainty but I have come out on top no matter what!

~ Yours in health
Skycatcher

Red Hen · « **Reply #136 on:** April 25, 2015, 10:16:20 am »

Hi, lonewolf, Skycatcher, Sapphire and all. Skycatcher, I appreciate the time you took on your post. Not getting the additional 4 weeks is quite an uncomfortable situation with your doctor wanting one thing and the insurance company wanting another. I like that you are listening to your body and feeling o.k. about the results of the 8 week Harvoni. If there are problems in the future you can re-treat and now I've read about 6 week Harvoni being effective! We live in interesting times. The good news is that so many are getting rid of this disease!

skycatcher · « **Reply #137 on:** April 28, 2015, 01:15:49 pm »

Hey RedHen and all!
That is interesting news about 6 wk Harvoni. I am one who never likes to take more of a med then is needed. I have to say though I would be very alarmed if that were me but after I finished the initial apx 6wk it has seems like I have been coasting down hill. All has been very smooth -no side effects- except the weight gain about 10lbs. I am a little chubbier for the wear but I'll take it. I tell my partner more to hold on to... and can't miss me in a crowd anymore. (I kinda feel like Tim Allen's Santa Claus character with the new inches....) it could be worse though. I think my body needed the extra food to fuel my liver and metabolism changes. So I must say I think the last thing anyone should worry about is a little weight gain when taking a serious med like this. I can lose this and be just fine over time.

~ Skycatcher

shootingforzero · « **Reply #138 on:** May 24, 2015, 05:26:24 pm »

Hi!

Long-time lurker, new member.

I'm about to start 12 weeks of Viekira Pak, without Ribavarin. Should be getting my first shipment this Tuesday.

I'm 35 years old, female, genotype 1b. Fibrosis F1-2. Treatment naive. Mostly normal liver enzymes and feel healthy.

In all likelihood I contracted Hep C through a blood transfusion as a newborn, so it's been 3.5 decades with the virus, though I was only diagnosed 6 years ago, through some routine blood work.

Excited and a little bit nervous to finally get treatment. I've been waiting on Interferon-free meds. My doctor prescribed me Harvoni back in October, but I was repeatedly denied by insurance. Then I unexpectedly got a free voucher – via my doctor – from AbbVie for Viekira Pak. Which, as it turns out is the best match for my genotype anyway.

Let's see how it goes...

Philadelphia · « **Reply #139 on:** May 24, 2015, 05:34:59 pm »

Hi Shootingforzero, welcome and good luck. Viekira Pak is indeed an excellent match for 1bs and without the devil drug ribavirin you should have minimal side effects. There's a few Viekirians, myself included. We're doing okay! I'm 8 weeks in to a 24 week treatment. I blog my treatment (and other non hep c related stuff) as well as have a thread here. Link below if you want hours of mindless reading.

shootingforzero · « **Reply #140 on:** May 26, 2015, 07:20:06 pm »

Just received my first shipment of Viekira Pak (no Riba).
Under strict instructions not to take my first pill until I've heard from my nurse, but I'm pretty excited.
Here we go...

Else · « **Reply #141 on:** May 26, 2015, 07:21:50 pm »

Congrats, SFZ!!! That would be music to my ears indeed.

Philadelphia · « **Reply #142 on:** May 26, 2015, 07:22:05 pm »

Congrats! Go for gold!

baby1315 · « **Reply #143 on:** May 30, 2015, 06:51:49 am »

Hi Skycatcher and David,

I'm on my 8th week of treatment. Almost near the end. Beause by Hgb with low. Dr. recommended not to take the pm dose of the Ribavarin as of 5/20. I've been off Ribavirin so far 11 days. My next Blook work is in June. Have any of you had to have your medications adjusted because of your blood work? Hopefully, this will not effect my HCV V/L.
Thanks

pappy · « **Reply #144 on:** May 31, 2015, 12:09:24 pm »

Well after taking Harvoni for 8 weeks my dr. or insurance decided to forgo the final month . After 8 weeks i was starting to feel much more energy and was adjusting to the medication and its side affects . This decision to forgo the final month turned out to be a bad decision as my hep c returned with a vengeance getting to near 8mill load. Then after my dr. prescribed Viekira pak w/ribavirin my insurance said no and a 60 day battle ensued after witch i was finally approved (Yeah). So here i am into my first week of what i hope is a full 24 week effort to solve my problem . No major issues had a little bit of all the side affects but i would say that viekira pak is easier than Harvoni except in the number of pills you need to remember to take . Good luck everyone , with gods good grace maybe all of you will be cured without having to do a retake .

Else · « **Reply #145 on:** May 31, 2015, 12:30:31 pm »

The mind just reels, Pappy! Your insurance acknowledged you need treatment by approving the Harvoni. Then cheaped out by gambling with your health for a shorter than recommended length of treatment (doubt very much it was your doctor's idea), then arbitrarily decided you don't need further treatment by denying the Viekira Pak???

I'm glad you prevailed in your 60 day battle, but geez. How this is all legal is beyond me. I think the "insurance fraud" label swings both ways. They're accepting premiums for a service they're not providing.

pappy · « **Reply #146 on:** May 31, 2015, 01:02:51 pm »

Well Else after 8 weeks of Harvoni no virus was detected and there are many that have found success after 8 weeks . This is a difficult time for insurance companies as drug developers are asking obstinate prices for drugs that are well , life changing . Not just for Hep c but many cancer remedies as well . The Obama care act had many good aspects but a few bad ones as well , it gives to much power to insurance companies !

Else · « **Reply #147 on:** May 31, 2015, 01:42:19 pm »

You're gracious about the situation. I wish you a speedy recovery!

dearprudence · « **Reply #148 on:** May 31, 2015, 09:08:00 pm »

Just finished week three on VPak and Riba. My insurance only wanted to approve 8 weeks, but my doc would not accept that. (He was one of the researchers on this combo) So far so good.
Blood work weekly and so far no anemia. Drinking plenty of water. Tired at times, but no real fatigue. Some trouble sleeping through the night sometimes - other times, no problem. See doc this week and checking VL. Hoping for the best! Good luck to all of you on this road to a cure!

shootingforzero · « **Reply #149 on:** June 05, 2015, 12:25:36 am »

I've officially completed my first week of Viekira Pak without Ribavarin. Reporting back for those curious about what that's like.
In a word: Uneventful.

If you want details:
I felt slightly iffy for the first six days. Not nauseous exactly, but a little fuzzy, or dizzy – I'd call it "nausea adjacent." Also slightly off in general, like I was coming off the flu maybe. I don't want to give the impression that I felt bad in any debilitating way, just not quite my usual self, a little low energy, a little foggy.
But I was still able to do all my normal things: work, work out, etc.

Any trace of weirdness seemed be gone yesterday. In fact I felt so good, I wondered if I'd somehow forgotten to take my morning dose.

Here's hoping it stays this way.

Oh, and I've been making a point of drinking lots of water. My doctor told me that, plus making sure to take the pills with a meal, should stave off many of the side effects.

shootingforzero · « **Reply #150 on:** June 06, 2015, 02:09:13 am »

Shouldn't have been so upbeat yesterday: broke my finger today, and can't take anything stronger than ibuprofen because of Viekira interactions. Do not recommend.

Also: even though I warned the doctors at the ER and showed them the package insert, they tried to force norco on me, which has major interactions as it turns out. Good thing I refused to take it

Else · « **Reply #151 on:** June 06, 2015, 11:07:47 am »

Ouch! But I'm glad you're read up on your medications and are keeping yourself safe.

sapphire101 · « **Reply #152 on:** June 06, 2015, 07:43:17 pm »

Pappy do I have this right?
You started on harvoni, cleared the virus at 8 weeks, and now (because of insurance craziness) you are on vikiera and ribavirin for another 24 weeks?
You should be your own clinical trial!

ps to Shootingforzero- OUCH- broke my toe in May and it is still a little bit swollen.

pappy · « **Reply #153 on:** June 07, 2015, 12:04:01 am »

It is a mess and would much rather not be starting over . If I have learned anything it is that Harvoni is not a miracle pill . But also you must be a retard (best word i can use ) when dealing with the insurance companies . Watch this thread to see if they take it full term this time .

Quote from: sapphire101 on June 06, 2015, 07:43:17 pm

Pappy do I have this right?
You started on harvoni, cleared the virus at 8 weeks, and now (because of insurance craziness) you are on vikiera and ribavirin for another 24 weeks?
You should be your own clinical trial!

ps to Shootingforzero- OUCH- broke my toe in May and it is still a little bit swollen.

shootingforzero · « **Reply #154 on:** June 07, 2015, 12:14:45 am »

Hang in there Pappy.
If this whole process has taught me anything, it's how completely corrupt the insurance and pharmaceutical industries are.
Sadly, we have to depend on them to save our life.

Barto425 · « **Reply #155 on:** June 28, 2015, 11:44:24 pm »

Oh my goodness. I've never heard of being stopped midstream on a course of treatment. I still trying to get the VA to start mine...hopefully this week with Viekira/Ribavirin for 24 weeks. I'm curious if you ever tried the old treatment of interferon/Ribavirin in the past and/or have cirrhosis.

bkmusic · « **Reply #156 on:** June 30, 2015, 12:48:40 pm »

HI Fellow Viekiera folks,
I just started DAY 1 today!! No riba and bit nervous about it all but trying to stay positive and hopeful that this was the right decision.

Gen 1b
No chirrosis
Treatment naive contracted in 1972

Definitely need support through the journey so replies very welcome

Barto425 · « **Reply #157 on:** June 30, 2015, 01:46:13 pm »

I'm not on Viekira but you'll do fine. It's the Ribavirin that causes the most side effects so that's good. Even with the Ribavirin it's doable. Just remember that the disease is the enemy not the cure. Good luck on a long, healthy life.

shootingforzero · « **Reply #158 on:** June 30, 2015, 02:17:50 pm »

Just got my week 4 blood work back.
Viral load is now:
HCV Real Time <15 detected
HCV Log IU/ml: <1.18 detected

AST is 19
ALT is 11

I know this doesn't really mean anything other than that I am responding well to treatment, but seeing my AST and ALT levels drop is an amazing feeling.
The viral load too of course, though I would have been even more excited if it was <15 and <1.18 undetected.

In terms of side effects, nothing major to report, some very slight skin weirdness on and off.
The main health event for me has been getting surgery for a broken finger, which was not Viekira related at all, other than I couldn't take heavy pain meds due to Viekira. (I did get general anesthesia though.)

Onward and forward to week 8, 12 and EOT!

Philadelphia · « **Reply #159 on:** June 30, 2015, 05:54:51 pm »

I was still detected at 4 weeks Shootingforzero but by 8 it was undetected. My ALT and AST continued their nice steady downward trend.

Barto425 · « **Reply #160 on:** June 30, 2015, 06:12:20 pm »

I noticed that the trend with Viekira for a non-detectable viral load is around 8 weeks. With Harvoni around four weeks....but who cares....lol....as long as you achieve it. Best wishes everyone....wish I could get started today. Still waiting?

dearprudence · « **Reply #161 on:** July 01, 2015, 10:30:46 am »

Quote from: Barto425 on June 30, 2015, 06:12:20 pm

I noticed that the trend with Viekira for a non-detectable viral load is around 8 weeks. With Harvoni around four weeks....but who cares....lol....as long as you achieve it. Best wishes everyone....wish I could get started today. Still waiting?

halfway through week 7 of 12 on vpak and riba - virus undetected at week 3 - recent bloodwork - ast 11 alt 7 hemoglobin 12 ---- hang in there everyone! No major side effects.

baby1315 · « **Reply #162 on:** July 04, 2015, 01:06:45 pm »

Has anyone completed Vierka pak and Ribavrin 12 week program. I ended on 6/24/15. Next blood work on July 16. Has anyone become hcv v/l free after treatment. I'm a little nervous. Over numerous treatments I have had. Everything was good when I finished but v/l came back after 2 months.

Just wanted to know if anyone on this treatment has had any success.

Thanks.

hepctreatnow · « **Reply #163 on:** July 04, 2015, 01:42:11 pm »

baby1315,

Yes I completed on June 30th and have been UNDETECTED since week 2. I've read all the post treatment scientific papers and your chance of relapsing are next to none. I feel great and my liver has also improved (cirrhotic) tremendously to the point where I will be no longer cirrhotic in the next short while. I can provide more details just ask. Cheers, Michael

mrcat211 · « **Reply #164 on:** July 11, 2015, 05:42:54 pm »

I feel for you. My insurance denied Viekira and Harvoni......I am waiting...waiting....waiting.
F3 and I do not qualify for medi-cal. My kids are trying to raise the money for my Harvoni. I am so sad about it all

Lynn K · « **Reply #165 on:** July 12, 2015, 03:40:53 am »

Sorry you are having a difficult time getting meds mrcat

Did you get a denial letter? What were the grounds for denial?

Have you and your doctor appealed?

Have you looked into any clinical trials?

Good luck to you
Lynn

dearprudence · « **Reply #166 on:** July 12, 2015, 08:51:50 pm »

Quote from: mrcat211 on July 11, 2015, 05:42:54 pm

I feel for you. My insurance denied Viekira and Harvoni......I am waiting...waiting....waiting.
F3 and I do not qualify for medi-cal. My kids are trying to raise the money for my Harvoni. I am so sad about it all

Hi mrcat211- call Gilead - from what I understand once you get 2 denial of treatment letters you can apply to them directly to get Harvoni at a very low copay. I was denied Harvoni and started on that path, but then I was approved for vpak and riba. GoodLuck! Prudence

Lynn K · « **Reply #167 on:** July 13, 2015, 02:28:38 am »

Hi dear prudence

Sadly Gilead Support Path had a policy change on July 1st and are not going to provide Harvoni for patients denied by insurance the argument being basically they are enabling the insurance companies to not provide meds for people with minimal liver damage. I have seen there have been some suits brought against insurance companies for not providing hep c meds guess we will see what happens

dearprudence · « **Reply #168 on:** July 13, 2015, 01:51:59 pm »

oh Lynn K, what a shame! It sees like they were trying to do a good thing and the insurance companies saw a way to use it to their advantage. I hope the insurance companies are made to pay for putting money above saving lives. I have read stories on here about companies stopping treatment as soon as VL is undetected - rolling the dice

Prudence

Barto425 · « **Reply #169 on:** July 13, 2015, 03:22:51 pm »

I have read a few stories that say when the meds are stopped early the Hep C viral load can come back with a vengeance. Now it could be resistant to other similar treatments. Theoretically they could inadvertently be creating a new strain. Just my opinion. I'm still waiting on the VA for my meds. Started this journey May 13th....still no meds. Sigh.

shootingforzero · « **Reply #170 on:** July 30, 2015, 01:45:35 am »

Well, my 8-week results are in and I am now officially undetected!
AST 18
ALT 13
Let's hope it stays that way.

For those who are curious, I'm still not noticing any significant side effects. I may be somewhat more easily winded than I was before treatment, but I've been able to keep up my normal training, so it's pretty minimal. But it could also be due to other factors. I guess I'll find out once I'm done with treatment.

And just now seeing the bit about Gilead changing their support path policy. That is crazy. This whole experience has really driven home to me how corrupt both the pharmaceutical and insurance industries are.

Philadelphia · « **Reply #171 on:** July 30, 2015, 08:11:49 am »

Great great news.

shootingforzero · « **Reply #172 on:** December 10, 2015, 01:16:55 am »

Reviving this zombie thread to just to report that I am now more than 12 weeks past EOT with Viekira and still undetected. Was officially given the clean bill of health by my doctor a few weeks back. Just adding my story to the pile, in case someone needs the encouragement.

I haven't had any weirdness or side effects since end of treatment and feel great. (Never really felt sick in the first place though.)

I hope for a healthy future and easy treatment for everyone out there who is starting or hoping to start treatment soon.

If you're curious about my numbers see my signature below.

hepctreatnow · « **Reply #173 on:** December 10, 2015, 01:24:20 am »

IT's been a long while. I was undetected and pronounced cured at week 12 post treatment. Hep C virus came back "en force" we realized a month later. I will be starting on a new treatment on January 4th. (More on that later). Keep getting tested. VPAK might not be all that it was advertised to be.

shootingforzero · « **Reply #174 on:** December 10, 2015, 01:28:14 am »

Sorry to hear that hepctreatnow.
That's bad news indeed.
Where there any physical signs or did you just get tested a month later and see a viral load?

(I'm getting tested again at 24 weeks post treatment and 1 year post treatment, so I will be monitoring my status going forward.)

hepctreatnow · « **Reply #175 on:** December 10, 2015, 01:32:50 am »

I was tested a month later and they can't figure out why. Might have to do with my compensated cirrhosis. Other than that, my liver improved tremendously and I'm feeling really good. I've started to read research papers again and VPAK seems to cause issues with some people.

Anyhow, TTYL.

shootingforzero · « **Reply #176 on:** December 10, 2015, 01:35:08 am »

I did see a research report that said several people with cirrhosis had gotten very sick on Viekira. So much remains unknown with these new drugs.
Fingers crossed for you moving forward.

I've been very lucky in that I only have stage 1-2 liver damage despite likely having had Hep C my entire life. (Though my liver values were beginning to look wonky in the year before treatment, so who knows...)

hepctreatnow · « **Reply #177 on:** December 10, 2015, 01:42:38 am »

Well I'm starting a new experimental treatment in January. Sovaldi + velpatasvir + GS9451 from Gielad. I'm genotype 4 and 100% cure rate amongst Geno 4 with compensated cirrhosis. More on that in next few days. In the meantime, I work full time again and run an average of 5--60K a week. I was running over 80K a week this summer. Cheers and I'm sure all will be fine with you.

hepctreatnow · « **Reply #178 on:** December 10, 2015, 01:44:38 am »

.. Keep getting tested after the pronounced you "Cured"/ Not only F$ patients have relapsed I've read of other patients relapsing with F1 or F2. They don't know why.

Cal · « **Reply #179 on:** December 10, 2015, 11:08:31 pm »

Hepctreatmow,
Had you txed before? I am a high risk relapser because of RAVs. I am about to complete 17 weeks of Viekira and RIBA. My Gastro came back from the San Francisco conference with the information that the combo you are going on is the one fir Viekira relapsers, so your going to clear this time. Even if you were tx naive, you could be one of the 30% of people who have resistance RAVs. This is the only reason you wouldn't have cleared not the drug.,though even if you have RAVs it doesn't always mean you won't clear. Can you fill in your profile signature to let us know about you and we can support you through your next tx. I am really interested in your next tx. Cal

hepctreatnow · « **Reply #180 on:** December 11, 2015, 12:00:31 am »

Hi Cal,

Yes I was on the same treatment as you - VPAK + RIB - 12 weeks. My first treatment. Relapsed after pronounced 'cured' week 13-14 post treatment. This new treatment will nuke it from what I'm reading. Other than that things have been great. Th positive from VPAK/RIB treatment is that my liver has improved to a point where the docs. were asking me what my nutrition and supplements stacks was. I gave them the list. They freaked out

in a good way. I will post my experience with alternative liver treatment soon. Keeping n good physical shape is also important.

Thanks for the note, its encouraging to get support as always. Let me know how it goes. More on my upcoming treatment in next few days. Seeing doc. tomorrow. There will be no Ribavirin in this treatment. Wasn't so bad though first go around.

hepctreatnow · « **Reply #181 on:** December 11, 2015, 12:02:31 am »

By the way... RAV? Sorry but never heard of that acronym.

Cal · « **Reply #182 on:** December 11, 2015, 07:46:59 pm »

Hi HepCTN,
RAVs are resistance-associated variants. It's the mutations that are caused by previous txs with similar drugs. In Viekiras case NS5A's and NS3. They render the drugs useless, or I should say not in every case and depending on how long ago you txed. I I have txed before this Viekira one with both those DAA's in a clinical trial which included ifn and ribas as well. . So I have been checked for RAVs but because we are backward in Australia and our drugs have not been approved by the PBS here (They should be announced February with luck) we haven't got that far with testing. SO my tests went to a Scientist not a blood labs. He is going to do it in the name of Science not for my tx. S I have been waiting 18 weeks. I'll know after tx now as today is my LAST DAY!!!!.
I will be watching you posts eagerly as I believe I will relapse. I've have before, so why not again? I will have a nice shock if I do SVR. But my back up is those drugs you are going on. Are you getting them in a clinical trial? Or have they been passed by the FDA already? Cal

HazelAustralia · « **Reply #183 on:** December 11, 2015, 10:43:21 pm »

Great news Shootingforzero & encouraging, thanks!

hepctreatnow · « **Reply #184 on:** January 28, 2016, 07:55:34 pm »

Hi Everyone,

New treatment: Sofosbuvir, Velpatasvir, GS-9857. 1 pill a day with food. This will be the one for all genotypes that will hit the market later this year or early next year.
Its been 10 days and no side effects whatsoever.

AussieRosa · « **Reply #185 on:** January 29, 2016, 02:40:39 am »

Hi, hepctreatnow. Good to hear you've started the new trial and there are no sides. Hoping it remains that way for you, and this go around kills the beast. Best of luck to you!

Mythical · « **Reply #186 on:** November 16, 2016, 05:47:12 pm »

I've just finished the 12 week course vikira pak with ribavirin. I didn't get any side-effects till the 9th week then they all hit. I got horrible neck spasms ended up in hospital for a night. I got headache. Itchy as all over,lol didn't sleep. Got a bit of nausea But hey no pain , no gain . Now that I'm finished I've still got the itchy thing going on but mainly on my hands and head. But I'm feeling way more energetic. Back to normal sleeping. But I'm not a person that like taking pills much, so this was a effort .but I'm sure one worth persistence. It's my second week after finishing .

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