Author Topic: Anyone on Viekira Pak or completed Viekira Pak? (Read 134684 times)

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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