Author Topic: Vikieara + Riba 1200 MG (Read 14712 times)

Boatguy · « **on:** October 10, 2015, 09:52:06 am »

Figured I'd share .

Maybe help someone deciding on treatment, or those wondering how it goes.

I am 56 YO and consider myself VERY healthy other than having hepc

Found out I had it about 10 yrs ago, and waited for new meds as I knew Peg Interferon was not for me.

I think I got it while in the Army back in the early 80's.

Did 2 liver biopsy (laproscopic) and came back as minimal damage being done by hepc.

So started Vikiera 3 weeks ago and did BW at 2 weeks.

At 2 weeks went from 5.1 million viral load to a simple 18 !!!!
Very happy with that.

I really wanted Harvoni, but insurance would not cover it. BCBS.

So my biggest fear/concern were side effects, and how they would affect my daily activities.

Right now I can say that I am doing everything I did before treatment, just with a slight less intensity.

Still go to the gym, still run (although not as fast and shorter distance)

My sides so far have been headaches and nausea that come and go, and insomnia.

I take the meds at 7AM and about 6-7 PM everyday.

The insomnia has been the worst part of it, but I am working with it.

If I sleep bad a few nights, then I usually sleep great for 1 and feel OK.

Cant wait for my 4 week BW, and hope to see undetected.

Along for the ride, and wish the BEST for everyone on the same bus!!!!

KimInTheForest · « **Reply #1 on:** October 10, 2015, 01:56:16 pm »

Welcome to the forums, Boatguy, and to the treatment journey!

Re: Insomnia - my treatment team told me to move my 2nd dose of ribavirin up to 4pm to help with the insomnia, not take it in the evening. I did, and it helped. Didn't eliminate my insomnia. But it certainly reduced it. I have had some insomnia for many years - a side effect of Hep C.

My treatment team also told me it does not matter at all when we take our riba pills throughout the day. We could take all 6 of them at once if we wanted to, but it might be hard on the stomach. So it is safe to 'play with' your dosing times on riba to find what works best for you, so long as you get your full allotment of pills somewhere in each 24-hour cycle.

best,
kim

KimInTheForest · « **Reply #2 on:** October 10, 2015, 02:03:50 pm »

Oh - and fantastic drop in viral load, by the way !!! from 5 million to 18 in just 2 weeks. Way to go!!! You're rockin this thing!

kim

Cal · « **Reply #3 on:** October 10, 2015, 06:03:39 pm »

Hi Boatguy,
Welcome to the forum fellow Viekarian. How long are you txing for? Are you taking ribavirin as well? If you could fill out your signature profile it will stop us asking the same questions over again. It's. Ok'd record for you too, as tx can get hazy because it's over a long period of time.

If insomnia gets bad, get something from the :doctor. You need your sleep. Good luck. Cal

Boatguy · « **Reply #4 on:** October 10, 2015, 06:47:25 pm »

Great info .... thx guys and gals.

I am the internet doctor type, and tend to read too much sometimes!

I almost did not start treatment because I was afraid of some of the sides I had read about. (Especially the riba related ones)

My doc told me to MAN-UP, and just go for it.
Said if I wanted to know what bad really was, I was welcome to try peg-interferon.
I love his straight to the point attitude.

So, I am really glad I started this mission, and looking forward to completing it.
So far, so good.

Cal · « **Reply #5 on:** October 11, 2015, 08:08:55 pm »

Boatguy,
Stay off Dr. Google it can be very dangerous. Only read publications or forum conversations. The patients are the real experts in tx. The drugs and keeping us safe while txing is the Specialist job.

You are lucky you didn't try inteferon and waited. Wish I had too. Oh well that's history now. Onwards and upwards we have a second chance with viekirapak! Cal

Philadelphia · « **Reply #6 on:** October 13, 2015, 08:08:57 am »

All the very best! I am 5 weeks post treatment and feeling pretty good. This is a great time to be accessing treatment!

Boatguy · « **Reply #7 on:** October 17, 2015, 04:29:49 pm »

Quick update .....

Finishing up week 4 now.

Feeling good overall. Minor sides really have not been a big issue to manage.

Bloodwork on Monday ..... hoping to see UNDETECTED on the results.

KimInTheForest · « **Reply #8 on:** October 17, 2015, 04:45:36 pm »

Quote from: Boatguy on October 17, 2015, 04:29:49 pm

Quick update .....

Finishing up week 4 now.

Feeling good overall. Minor sides really have not been a big issue to manage.

Bloodwork on Monday ..... hoping to see UNDETECTED on the results.

Good luck on your Week 4 labs, Boatguy! And great that treatment has been easy so far. Let's hope it stays that way.

best,
kim

BillT · « **Reply #9 on:** October 17, 2015, 05:15:11 pm »

I got mine in the Army back in the early 70's Boatguy.My doc told me we got it from the pneumatic vaccine guns.After someone flinched and it cut them they didn't stop to wipe the blood off before moving to the next guy.I wish I was finishing up week 4.I'm like you as far as reading goes,I've read so much about the virus I could probably get a job with the CDC.

BillT · « **Reply #10 on:** October 17, 2015, 05:22:25 pm »

For what it's worth.I didn't get diagnosed until I gave blood in the 80's.They didn't even know much about it until then.

Cal · « **Reply #11 on:** October 17, 2015, 05:24:05 pm »

Hi Bill,
You're not the first person on this forum to say they got it that way. Will you get compensation for this?

We had an anaesthetist here who was using the drugs on himself and then using the same needle on his patients. There was a class action against him and compensation was awarded.

Just doesn't seem fair and just Bill.

Good luck with bloods. Cal

]

BillT · « **Reply #12 on:** October 17, 2015, 05:31:08 pm »

I'm a 100% service connected vet Cal.They take good care of me and that's why the VA is picking up the tab on this for me.

BillT · « **Reply #13 on:** October 17, 2015, 05:35:27 pm »

I was shocked when my doc told me he wanted to put me on this and asked if the VA would pay $90k for it.He looked at me and said he would rather spend that on me now than a million later for a liver transplant.I agreed.

Cal · « **Reply #14 on:** October 17, 2015, 06:00:59 pm »

Bill,
Oh the VA Vet Affairs, ok learning all the time. Ok that's good that they picked up the tab and you are happy Bill. Cal

Cal · « **Reply #15 on:** October 17, 2015, 06:03:08 pm »

Bill,
Your Doctors argument about the cost if a transplant is one of the arguments we're putting forward to the Australian Government. It's more cost effective to tx now than the cost of medical service and transplant in the future. Cal

byebyeC · « **Reply #16 on:** October 17, 2015, 07:40:12 pm »

Welcome to the almost halfway Viekira club Boatguy and BillT!

Wishing you the best and few to no sides!

Marianne

lporterrn · « **Reply #17 on:** October 22, 2015, 06:29:30 pm »

The FDA just posted a warning about Viekira Pak and Technivie: http://www.fda.gov/Drugs/DrugSafety/ucm468634.htm

Boatguy · « **Reply #18 on:** October 22, 2015, 06:41:03 pm »

Thx for sharing that ......

Cal · « **Reply #19 on:** October 23, 2015, 11:52:09 pm »

Hi Iporterrern,

Thanks for the Link. I read it, do you recommend that we take this to our txing Doctors? I don't know if AbbVie would have issued a warning that would go to the Australian Doctors txing their patients with Viekira?

Is this common to have warnings issued after FDA approval? Cal

lporterrn · « **Reply #20 on:** October 24, 2015, 05:50:55 pm »

It doesn't hurt to ask if they are aware of the warnings. Probably the most important thing is to know the warning signs, and seek immediate medical attention. I've heard through the grapevine that these cases occurred among those who should not have been treated with V-pak in the first place. I'm hoping to get my hands on the hard data, rather than hearsay.

Philadelphia · « **Reply #21 on:** October 24, 2015, 06:04:17 pm »

I flicked the link to my treating team via email with a query asking if I should be concerned. They were in contact within an hour saying they thought not, as my bloods had returned to normal quickly and I was 7 weeks after treatment.

Cal · « **Reply #22 on:** October 25, 2015, 01:10:56 am »

Phily, that's good news. I flicked it to my txing GP. It's the weekend though so waiting to hear. I am not worried though. I am worried about those who are worried though. If you know what I mean. Cal

Cal · « **Reply #23 on:** October 25, 2015, 01:13:18 am »

Hi ipporttern,
Thanks for. That extra info. It sounded like that from the FDA announcement. Why were Doctors allowing their patients to be in such danger. Desperation I guess. Cal

lporterrn · « **Reply #24 on:** October 25, 2015, 10:50:26 am »

I am not sure of what factors lead to these mistakes, but the reports were worldwide and I don't know how many occurred in which countries. I'll say a tad more in my Monday blog at http://blogs.hepmag.com/lucindakporter/

Cal · « **Reply #25 on:** October 25, 2015, 05:53:50 pm »

Hi Lucinda,
What an interesting blog. Love your blog on ribas. Cal

KimInTheForest · « **Reply #26 on:** October 25, 2015, 06:05:24 pm »

Quote from: Cal on October 25, 2015, 05:53:50 pm

Hi Lucinda,
What an interesting blog. Love your blog on ribas. Cal

Ditto that! Great blog post on ribavirin side effects, Lucinda!

kim

badbradley · « **Reply #27 on:** October 26, 2015, 05:47:14 am »

Quote from: Cal on October 23, 2015, 11:52:09 pm

Is this common to have warnings issued after FDA approval? Cal

Hi Cal, This seems to be a recurring theme with the DAA HCV medications.
http://www.fda.gov/Drugs/DrugSafety/ucm332731.htm

http://www.fda.gov/Safety/MedWatch/SafetyInformation/ucm417602.htm

http://www.fda.gov/Drugs/DrugSafety/DrugSafetyPodcasts/ucm440475.htm

http://www.reuters.com/article/2015/06/29/us-gilead-sciences-fda-idUSKCN0P92IZ20150629

Quote from: Cal on October 25, 2015, 01:13:18 am

Why were Doctors allowing their patients to be in such danger. Desperation I guess. Cal

What is bothersome to me about this is that I have first hand experience with Doctors prescribing this Viekira Pak regimen to me without being fully informed about the possible (and likely) consequences if I were to Re-treat on that regimen after failing a regimen of Sovaldi/Olysio. Olysio being a Protease Inhibitor, as is Parataprevir in V-Pak. There are cross resistance issues and it is "NOT RECOMMENDED" by AASLD Guidelines. My Doctor even tried to convince me that after waiting a year, the RAV's would revert back to wild type, hence, leveling out the playing field and therefore it would be feasible to Re-treat with the same class of drug. That information on reverting back to wild type is inconclusive to date and I had to explain to him why I could not Re-treat on that regimen. He concurred with me and now we will carry on with trying to get approval for a recommended regimen.
My point here, is that the reason for them wanting me to treat with Viekira Pak is because that is what is on my insurance company's formulary and it was approved and everyone but me was on board with it. I more than likely would have failed that treatment and then I would quite possibly have NS5A resistance as well.
So, as Lucinda pointed out, it is not clear what factors lead to these mistakes. This scenario of pushing a treatment on a patient because that is what is available could have serious consequences for some. Another troublesome issue is, as I stated in another thread, some insurance coms. require F3/F4 fibrosis to get on treatment. Many on this forum have had Fibrosure, Fibrotest, Fibroscan etc. to evaluate their liver condition. Some of these are better than others but we all know that they are not 100% reliable. So if a Fibrosure test says your F2, it could very well be that your in fact F4 being the Fibrosure is not accurate in the middle range region. If I was F3 or F4, I personally would not want V-Pak. At the very least I think it is wise to try to get an accurate liver evaluation if Viekira Pak is being considered.
As well I think it is important to learn about the medicines you are putting into your body. After treating on the Olysio, which is metabolized by the liver, I most certainly don't want another liver unfriendly regimen in my system. Seems I dodged another bullet aside from the resistance issues.
While I personally have no reason to worry, I am concerned for others and if this saves 1 person from some unnecessary consequences then mission accomplished.
PEACE

Cal · « **Reply #28 on:** October 27, 2015, 06:02:29 pm »

Thanks Bradley,
They just don't know enough about resistance issues, there is a small trial I posted somewhere in here, sorry I can't remember which thread. I already have resistance isssues so know exactly what you're talking about. I do not know how I will go towards SVR but this is what was given to me on compassionate grounds. Resistance isssues aren't an indication of SVR though, so until there's more numbers they can't say. Merck are in development with a resistance free drug

cal

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Author Topic: Vikieara + Riba 1200 MG (Read 14712 times)