Author Topic: Considering Hep C treatment - Viekira Pak +Rib (Abbvie clinical trial) (Read 30722 times)

hepctreatnow · « **on:** February 06, 2015, 06:26:44 pm »

Hi everyone,

New to this site, I've been DX with Hep C Genotype 4 (rare case in North America) a few years ago with compensated cirrhosis with wacky platelet findings. Just did new blood test and Fibroscan and Ultrasound next week. Anyhow, my doc has enrolled me into this trial NCT02265237. The tentative date for start of this Abbvie trial is early March (if all goes well I'm assuming). Ombitasvir/ABT-450/Ritonavir (Viekira Pak) co-administered With Ribavirin for 12 weeks will be the regiment to follow.

From what I'm reading Rib can take a real toll on many people. I'm indecisive. Can anyone who has tried Rib with their treatment summarize what to expect from start to finish (I know everyone is different). My current symptoms is mainly Fatigue and issue with falling asleep sometime getting up in the morning is very hard.

Anyhow, I'm really enjoying the support all of you are providing to each other and am looking forward to contribute. Once I get my new results I will post them for your feedback.

Regards, Michael

sapphire101 · « **Reply #1 on:** February 08, 2015, 11:38:40 pm »

Hey Michael, I am awaiting on Viekira Pak. My Rx was submitted last week and the process is very new and not many of us on this forum (yet) are being treated with Vierkira pak. I am geno 1a and will need ribavirin too. Not sure how long until this will all go through, but we may end up starting treatment at the same time and we can learn together.
My opinion is that any med with a 97% cure rate sound good to me and my hope is that your trial will prove the same for Genotype 4.
I may start a new thread ProCeed or Abvie to pull some of us together who are starting down this road.
kindest regards to you.

Red Hen · « **Reply #2 on:** February 09, 2015, 11:12:59 am »

Hi, Michael and Sapphire. Interesting to find others who might use Viekira pak. I went through a drug trial of it and finished my pills almost a month ago. I was sure glad when those drugs got FDA approval last December! Not sure it means all that much but better than being denied. Please keep posting on your experience. I have often felt like the lone ranger out here.

lporterrn · « **Reply #3 on:** February 09, 2015, 12:57:24 pm »

I've taken ribavirin for 12 weeks (with Harvoni) and for 48 weeks (with peg). I had lots of side effects. The amount and intensity of side effects may be genetically-influenced, so some do better than others. I am not a fan of ribavirin, and if I could have avoided it, I would have. However, that said, if someone said I had to do it again for 12 weeks, I could manage. Good side effect management is key - it is why I wrote 2 books about it.

Red Hen · « **Reply #4 on:** February 09, 2015, 05:58:54 pm »

Well, I guess Harvoni is The Miracle Drug with or without ribavirin! It would be great if everyone could get it. Just trying to share my own experience, which, so far, has not been too terrible. Also, not very valid to this forum. If I have offended anyone by not having worse symptoms from the ribavirin, I apologize. Not everyone has the same symptoms to the same degree. I am supportive of everyone no matter what treatment they are getting. Wishing everyone good health in the future.

sapphire101 · « **Reply #5 on:** February 10, 2015, 11:05:46 am »

"Prepare for the worst and hope for the best." A simple sentence to sum up the Viekira Pak approach. Expres Scripts is in control of my choice (see is self pay an option) and Michael has a clinical trial option opportunity. This forum is the highbar for intelligent supportive conversation around HCV. All the banner advertisement lead to Harvomi treatment and I assume this is who champions the site. They are likely big enough to encourage healing discussions for all no matter what path or how we proceed.

lporterrn · « **Reply #6 on:** February 10, 2015, 09:26:41 pm »

Hi Sapphire,
I can't speak for HEP, but I do know that they although they accept advertisements, they are incredibly conscientious about keeping objective. Unlike many sites, Hep won't sell user lists to pharma. Pharma can lurk, they can even join in, but heck - I wouldn't want to be working for Gilead and strike up a conversation here. In most cases, I think it is a better drug, but I've been vocal about my feelings for them, which are not good.

So yes, Gilead ads run on this site, but that is about it. Thanks for bringing this up - others probably wonder too.

hepctreatnow · « **Reply #7 on:** February 13, 2015, 04:10:02 pm »

Hi sapphire101,

Been through a series of test which included Ultrasound and Fibroscan. Reviewing the trial paperwork and signing next week. Blood test results are better than last years with a few exceptions (will post at some point shortly).

The Vieira PAk in this trial is combined into 1 pill and the Rib. More to come...

Cheers, Michael

sapphire101 · « **Reply #8 on:** February 13, 2015, 11:34:26 pm »

Wow one pill is a good progress Michael. This will be very beneficial for all and once your trial is complete others will be able to have a once a day Viekira option . Thank you!
I received my insurance approvals today and the medication- Viekira pak with riba will arrive on Monday. My co-pay is $15. The process took just a little over 2 weeks from submission to medicine. Look for my new posts once I start. I will join the on treatment discussions side and because there are so few of us on this med regimen I will post once a week with updates.
Red Hen please report back in April with your final. You were there first and we want to know how it turns out for you.

hepctreatnow · « **Reply #9 on:** February 20, 2015, 07:50:44 pm »

Got the result from Ultrasound and my Hep doc tells me there's a very small spot they'd like to check with an CT Scan and blood test. Anxiety is creeping in. So, we have to wait for the treatment to start until we get those results.

Frankly, I feel pretty good and not too work about it and want to get on with the treatment. Michael

sapphire101 · « **Reply #10 on:** February 20, 2015, 10:38:04 pm »

Hang in there Michael and get back to us with an update as soon as you can.

hepctreatnow · « **Reply #11 on:** March 11, 2015, 05:12:21 pm »

Long wait but my CT scan appointment is tomorrow. Completed HCC blood test last week and will reviewed with CT scan results shortly. Fibroscan test was also done.

In the interim, here's my blood test results from last month (comments?).

WBC 3.8 (Low) --- Ref. range 4.0-11.0
RBC 3.58 (Low) --- Ref. range 4.30-5.90
Hemoglobin 117 (Low) --- Ref. Range 135-180
Hematocrit 0.35 (Low) --- Ref. Range 0.41-0.52
MCV 98 --- Ref. Range 80-100
MCH 32.7 --- Ref. Range 27.0-34.0
MCHC 333 --- Ref. Range 323-365
Platelet Count 110 (Low) --- Ref. Range 150-400
Neutrophils 1.7 (Low) --- Ref. Range 2.0-8.0
Lymphocytes, Monocytes, Eosinophils, Basophils, Granulocytes Immature and Polychromasia all normal.

INR 1.3 (High) --- Ref. Range 0.8-1.2
Electrolytes all normal
Creatine 68 (normal)
Estimated GFR 103 (normal)
Albumin 36 --- Ref. Range 35-50
Total Bilirubin 18 --- Ref. Range <25
Direct Bilirubin 9 (high) --- Ref. Range <7
Alkaline Phosphatase 83 --- Ref. Range 40-145
Gamma GT 181 (High) --- Ref. Range <49
ALT 112 (High) --- Ref. Range <50
AST 109 (High) --- Ref. Range <36
Alpha Protein 24.5 (High) --- Ref. Range <7.1
Hepatitis C - Genotype 4 (very rare in North America)
Hep C Virus RNA (PCR/NAAT) - 5.03 Log10

Once CT Scan results come in to ensure no cancer (small spot on liver they want to check) I will be starting Vieira Pak and Rib for 12 weeks. I'm also considering going back to work and get on a plan again which would cover Harvoni if all else fails.

I'm kind of anxious about the CT scan result.

Glad to hear updates from those on Vieira PAK treatment.

Regards, M

Red Hen · « **Reply #12 on:** March 11, 2015, 06:46:56 pm »

Good to hear from you Michael and wishing you the best!

hepctreatnow · « **Reply #13 on:** March 11, 2015, 10:48:14 pm »

Can someone shed light on my Alpha Fetoprotein reading? Is it common to have an elevated AFP with advanced liver disease? My reading show:

Alpha Fetoprotein 24.5 (High) --- Ref. Range <7.1

hepctreatnow · « **Reply #14 on:** March 12, 2015, 07:29:30 pm »

Got my CT scan result right away and all is clear. I will be starting treatment shortly.

Cheers, M

sapphire101 · « **Reply #15 on:** March 12, 2015, 11:59:04 pm »

Fantastic news Michael.
That was a scary little detour.

Stay in touch and post when you start treatment.
I am on week four of my Viekira with Riba and all is well. Side effects are very manageable and my labs are good.

KimInTheForest · « **Reply #16 on:** March 13, 2015, 02:25:02 am »

Great news about your CT scan being clear, Michael! Congrats! And excellent that you are starting treatment. I hope to be doing likewise in next couple of months. Keep us posted on your progress.

Best,
Kim

Red Hen · « **Reply #17 on:** March 13, 2015, 06:52:30 pm »

Glad you will soon be starting treatment, Michael!

Lynn K · « **Reply #18 on:** March 18, 2015, 01:07:02 am »

Hi Hepctreatnow

Yes it is common to have elevated AFP with advanced liver disease I do know of a person who had liver cancer whose number was over 500.

Mine is also elevated before treating last year it was 26.3 on 1/7/14

most recent is 15.6 on 12/17/14 when I was on Harvoni for one month

Good luck

Philadelphia · « **Reply #19 on:** March 19, 2015, 05:59:19 am »

Hi, long time listener, first time caller, as they say on talkback radio.

I'm in Australia and am just about to start this treatment, all fingers crossed, on Monday. It's not yet available in Australia, I'm very lucky that my specialist is a great guy and has his finger on the pulse of what's out there.

Basically (and I think I have this right!), the drug/s have to approved by the TGA here in Aust and the government is baulking at the cost. Quelle surprise. So I am accessing it through a sort of access loophole that says if I am in dire health and would die without it, I can have access to it. I think that's how it works. Tell the truth, I don't care how it works as long as I get the access.

So Monday sees me off for a fibroscan, blood tests and all going well, I start treatment.

I can't celebrate until I have the pills in my hand, being a careful and cautious sort of person and not wanting to jinx anything, but you'll hear me loud and clear when and if I get them.

So - Sydney bound on Sunday for a day at the hospital on Monday. I'll be sure to post how it all goes, be it good,bad or in between. Just quietly I'm hoping for good. It's been a long haul to get this far. I'M hopeful that this will be the cure I've been waiting for. I know there's always got to be someone in the 5 or 10% of non-responders, so unfailing positivity isn't my default position, but hopeful is. I'm very hopeful. As Emily Dickinson says:

"Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all"

KimInTheForest · « **Reply #20 on:** March 19, 2015, 03:06:48 pm »

Good luck Philadelphia!! (Love that Emily Dickinson verse.)

Kim

hepctreatnow · « **Reply #21 on:** March 25, 2015, 01:36:48 pm »

Any day now I'm set to start Vieira Pak but I've evaluated Harvoni and might go that route... Will keep you posted next few days.

hepctreatnow · « **Reply #22 on:** March 26, 2015, 02:50:32 pm »

I'm starting treatment on April 7. They wanted me to stop taking Thorne TAPS liver support pills, Royal Jelly, and Korean Ginseng for 2 weeks prior to start of treatment.

I'm actually looking forward to start treatment.

BubbaT · « **Reply #23 on:** April 06, 2015, 12:09:14 pm »

Good luck michael,

Hope you get well soon!
Fight on brah!

hepctreatnow · « **Reply #24 on:** April 08, 2015, 01:08:39 pm »

Thanks BubbaT,

On Day 2 now as I started yesterday so far I'm not feeling any adverse effects.
800 mg of Ribavirin twice a day and Vieira Pak (1 pill combo) 2 pills once a day...

sapphire101 · « **Reply #25 on:** April 10, 2015, 01:10:42 am »

Hang in there M.
My first two weeks were the most noticeable for side effects then everything calmed down. I just concentrated on that if I could feel them then it must be working and making its way through out my body doing good work.

How many pills do you take daily? I take five in the morning and three in the evening. So Two orange, one beige, two riba each am and one beige and two riba each pm.

hepctreatnow · « **Reply #26 on:** April 10, 2015, 02:29:32 pm »

Hi Sapphire101,

6 pills total a day. VPAK combo - 1 pill (Ombistavir 12.5mg ,ABT-450 75mg, Ritonavir 50mg). I take 2 of the VPAK combo pills in the morning along with (2) 200mg Ribavirin. At night, only (2) 200mg Ribavirin pills. 2 VPAK combo pills and 4 Rib pills a day.

So far so good, I could feel the Rib pills doing its things last night somewhat but really the sides are easily manageable. Going for week 1 lab test next Tuesday.

I know its early but I feel in a subtle way that the treatment is already doing something to me. How have you been on it so far? What was the worst side you had?

Cheers.

Philadelphia · « **Reply #27 on:** April 10, 2015, 03:48:38 pm »

I ejust had my ribivarin dosage dropped back to 2 a day as a result of incredibly high bilirubin and diminishing albumin and Hg. They're running a rivivarin level test on me but my nurse thinks I may be absorbing it a little too well. My guess is they'll fiddle with the dosage until they find the sweet spot.

Since I've had that drop in riba I'm hungry again. At the moment I'm lying wide awake in a hotel in Sydney and I'm STARVING.

Week 2 was a killer for me. Since then it's been much better. I feel myself again. Seeing the drop in my liver enzymes gave me a real boost.

Red Hen · « **Reply #28 on:** April 11, 2015, 07:39:37 pm »

Glad to hear you're felling better, Philadelphia. Sapphire, Sounds like you are also doing well. I'm waiting on my 12 week post treatment lab results. Probably will get them next week. Nervous.

hepctreatnow · « **Reply #29 on:** April 12, 2015, 07:22:28 pm »

Coming up at end of week 1 and so far it has been relatively painless for the most part. The exception to this would be 2 or 3 times after taking my night dose of Ribavirin, I experienced aches and dry mouth and also perhaps a short boot of itchiness. But it didn't last.

I am wondering if week 2 is generally considered tougher as far as side effects are concerned?

I'm getting a blood draw Tuesday and lets see what it shows. Thanks all for your support.

Lynn K · « **Reply #30 on:** April 12, 2015, 07:30:05 pm »

Treatment and side effects are an individual experience some have more some have less some have none.

Good luck on treatment and expect the best!

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Author Topic: Considering Hep C treatment - Viekira Pak +Rib (Abbvie clinical trial) (Read 30722 times)