Hep C Discussion Forum

lonewolf · Member

All Aboard for the "Viekira Pak" Treatment Train: Enjoy the Ride for 12 or 24 weeks!

zavr · Veteran Member

Great news, RBell!! You are almost there!! Keeps us posted on how you are feeling.

Tig · Admin

Hi Bob,

The rash I had from the Riba appeared mostly on my abdomen. It can actually pop up anywhere, but mostly abdomen, back and legs (thighs). The thing with a Riba rash is to not under any circumstances scratch it! That makes it worse.

Other things to be aware of is avoiding too much exposure to the sun. It can cause it and make any you have much worse. Always use sunscreen and good UV sunglasses. Use a hat too, my head blistered in no time at all. If you develop it, with your doctors okay first, I used a cortisone cream, and an antihistamine, like Benadryl or Xyrtec (Certrizine). Loose clothing to keep it off the rash if necessary is helpful too. I hope you don't have a real problem with it, but if you do these ideas will help. A lot of people have their own tips, mine are just some of them.

If you have any problems or future questions, just let us know.

Tig

BobFromBoston · Member

Thanks for the replies! Follow-up question - for those of you who've had rash/itching, where did the rash present and how bad was the itching?

This link shows skin conditions in less than half of participants in a clinical trial of Vk+riba, so fingers crossed:

http://www.rxlist.com/viekira-pak-side-effects-drug-center.htm

Tig · Admin

Hi RBell,

Congratulations! That "undetected" result is so sweet. I couldn't be happier for you. Only a few more weeks and you're done. I hope the side effects have been better, I remember you had some headaches. Far better than the previous run, right! (Not really a question, I remember too well).

Hang in there and keep us updated on your progress. Good luck!

Tig

RBell · Member

8 week lab results Viekira and Riba. Geno 1A. Previous 20 week non-responder to Pega & Riba about 12 years ago.


HCV RNA, QUANTITATIVE REAL TIME PCR	<15 NOT DETECTED	<15 IU/mL
HCV RNA, QUANTITATIVE REAL TIME PCR	<1.18 NOT DETECTED	<1.18 Log IU/mL

All other lab results within normal range except billirubin still slightly high. 4 week labs were <15 and <1.18, but detected. Was a little nervous about that, but feel like there really is light at the end of the tunnel.

Bob

zavr · Veteran Member

Dear fellow VP train passengers,

I just got some of my 4wk test results today, and I am just floored! I went from AST of 34 and ALT of 56 down to 16 and 14. I almost couldn't believe my eyes! I am in awe of and deep gratitude for this amazing medicine.

As far as side effects, my hunger and headaches have subsided after about 2-3 weeks (although I am still a bit more peckish than usual). Definitely not a huge enough deal to worry about.

Ok, off to do my liver dance! Will get back to you with viral load results when I get them next week (they take a little longer to process).

Femapples · Veteran Member

My doc said I had classic interferon side effects. I thought it was the ribavirin having had a treatment with just interferon 10 years earlier but I was incorrect. I am feeling some fogginess and a sinusy headache. I took 75mg of Volterran, which is an anti-inflammatory and not contraindicated (I checked thoroughly with my doctor and with Abbevie). I took it because I hurt my knee the other day. I decided not to take it today to understand and identify the side effects. They felt like the beginning of a wicked sinus headache. I took the Volterran about 45 minutes ago and I feel better, still a bit of a headache but better. Since I'm on my third day, I imagine the side effects will get worse as the drugs accumulate in my system.

bubble · Senior Member

You do kinda wonder for all of us Pegysus/Riba survivors, was it the interferon or the Ribavirin that caused these episodes ? I can say is "I am experienced " This isn't gonna bother me this time. Just another monkey. Say, this train ride is becoming very comfortable. Good luck all you newbies. Don't be afraid to write.

Tig · Admin

Hi Bob,

Welcome to the forum! Glad you found us. Riba can be an issue as you've heard, but the symptoms are manageable. Educating yourself on the potential side effects can help you deal with most of them. Things like brain fog are unavoidable if you experience it, but I realized it when it affected me the worst. When you start ending up in the bathroom instead of the kitchen, odds are its happening. It doesn't affect everyone as much.

The anger and emotional issues are helped by awareness. When I got mad, I learned to separate myself from the antagonist ASAP. If it becomes too much, they have some options available to help you cope through treatment. 12 weeks goes by far quicker than 24-48, so you should be okay. We're here to talk and help you through it. Hopefully the knowledge and experience here can help you head some of those issues off at the pass.

If we can be of assistance, let us know! Good luck on your treatment. Time to slay the Dragon!

Tig

lonewolf · Member

I am on my 30th day of Viekira Pak with Ribavirin. Brain fog and irritability have been a big problem for me as well as anxiety. Seems to come and go. But then I have always been a bit high strung anyways which accounts for the anxiety. I try to use humor to counter-act the irritability. But that's me and like C-girl said this varies from person to person. You won't know for sure until you are on it. All in all I consider these minor side-effects for me and well worth it if it achieves my goal of being rid if this disease. Good luck!

Josh Haynie · Senior Member

Greatest Hep C Forum on the Web :)

http://114015.activeboard.com/

Cinnamon Girl · Guru

Hi Femapples and also Bob-Fr-B,

Just like to welcome you both to the forum and the Viekira Pak train, good to see you`ve found us!

Yes Bob, the side effects from ribavirin can include brain fog and irritability although it does vary quite a bit from person to person so it`s difficult to tell at this stage to what degree it will effect your ability to concentrate.

The strategies used to cope with it usually include things like easing up on work and other pressures, taking gentle exercise, relaxation and avoiding stressful situations. You`re only doing 12 weeks and you might find you the side effects minimal but it`s best to be prepared in advance.

Best of luck to you both of you with your treatments. Please feel free to have a good look around the forum and start new a new thread (`Start a new Topic`) whenever you like. We have many experienced members here who will be able to answer or reply to most questions and we also have a `search` function which you can find at the top of every page.

A positive attitude goes a long way! All the best ~ Jill

BobFromBoston · Member

Hi, I am scheduled to receive my Vikera Pak + Ribavirin on the 13th of this month (starting my 12-week regimen that day or the next). My question is directed specifically to those who are taking Ribavirin - how have the side effects have been for you? I've been reading up on riba side effects and the most concerning things for me are the descriptions of brain fog and irritability. Luckily, (as far as this is concerned) I don't have a day job, but I am involved with some projects that require me to stay on top of things and definitely not be temperamental with people I'm dealing with. My fibrosis is level 2 if that has any bearing on things. Any stories, advice, etc? Thanks!

Femapples · Veteran Member

Hello All,

I just started Viekira Pak with Ribaviron yesterday after a prolonged battle with Express Scripts. I am genotype 1a with kidney involvement. I'm told the kidney problems will reverse along with the viral CURE!!! So far, all I feel is a little stoned and maybe a little irritable. This is my third attempt. The first was about 20 years ago and just Interferon. The second was about 11 years ago with Interferon and Ribaviron. That was a disaster. I am trying to maintain a positive attitude and am supplementing the treatment with acupuncture and massage.

Glad to know there's a forum.

Femapples

fourlocos · Senior Member

I was on Harvoni not Viekira but I did color my hair once during treatment. Didn't notice anything different.

Tig · Admin

Hi Donna,

FYI, your viral load has no impact whatsoever on your rate of success. On some protocols, if your viral load is higher than 6 million, they may opt to treat longer. But that does not mean you have a lower rate of success. Your viral load fluctuates significantly. Your immune system is constantly battling with the virus and may make headway one week or month, destroying millions of the viral particles. If you have a viral load test during that period, your viral load can be significantly lower. Just the opposite might happen and if you have a low immune system from illness, etc, the viral load has the opportunity to increase. Sometimes it will get high and stay high, but as I mentioned, it doesn't reduce your chances of success! So don't worry about it, cause it doesn't matter. These new drugs kill them all in short order!! Rest, stay compliant, eat well and hydrate! That's the formula for success! Follow those orders and the Dragon will be leaving the building!!

Tig

PS: The 4 week test is certainly early enough. Just know that two weeks, even four are sometimes too early to expect an undetected result. But we have all gotten in the habit of wanting a 4 week test as a morale booster. It helps to see whats going on in there! Even if it isn't completely undetected, it's usually significantly lower, showing things are working as planned. You generally see your liver enzymes correcting very well too. It's always a relief to see things are improving! Stay positive and believe......

Triple · Newbie

Thanks -- my doc doesn't test at 2 weeks - so I will have to wait for 4 weeks. Not sure what my viral load was when I started but it normally ran from 5 to 12 million.

Donna

lilbit · Senior Member

Welcome aboard Triple. Sorry to hear you had a rough start but it gets better pretty quick. I am very aware that everyone reacts different but I haven't heard anyone talk about severe side effects or having to quit. It will fly by and in no time you should start having excellent results. Alot are undected at 2 weeks. I was and started with an almost 16 million VL.

Triple · Newbie

Hi all, I am on the Viekira Pak + the hated "ribaviren" train - started treatment on March 12th. Day 1-3 was great, day 4-6 was rough (riba rash, chills, headache) day 7 has been good - still have the rash but not as bad, and the chills and headache are gone (yea!!!!). I may survive this blankstare . No - make that I WILL survive this -- I want this f...in virus out of my body!!!

I do have one question for ladies who are on or have been on treatment -- can you get your hair colored while on treatment????

Donna

bubble · Senior Member

Thanks Guys and Gals. This syst in in my liver. Opps! They can get to your kidneys also. He said the same about them being very common.

Tig · Admin

Hi Bubble,

Jill's explanation is very accurate on the cysts. My wife is an Ultasound Tech and she tells me that they are very common and generally cause no problems at all. The only time they become problematic is if there is a multi-cystic condition. That's when the cysts start taking over the useful kidney space and there is resulting loss of kidney function. But that's a rare occurrence. As long as your doctor is aware of it and not concerned, you shouldn't be either. Good luck!

Tig

Cinnamon Girl · Guru

Hi again Bubble,

Yes, kidney cysts are quite common among the general population actually and are almost always harmless. Your doctor will tell you if there`s any need for them to be investigated further but I doubt if they`re anything to worry about

It`s sometimes surprising what shows up when we have an ultrasound scan, my first one picked up gallstones I didn`t know I had!

Sounds like things are progressing well with Abbvie now. Best of luck!

bubble · Senior Member

Zavr: Amazing, I just got off the phone with Abb-Vie! Very nice people. I have a $41 co-pay. I have to get a status report from the Doctor and then Abb-Vie calls them. They said it takes about 72 hours. They need the pre-authorazation info. I can also call my insurance co. to see what the final co-pay is going to be. I am praying I have the "medical nessesity" needed for the treatment. Thanks for the insight. Will keep you all posted.

bubble · Senior Member

Cinnamon: Are you familiar with these cysts? Ever hear of them?

Bubble.

zavr · Veteran Member

Hi Bubble,

Has the nurse mentioned that you were "pre-approved" by express scripts? If yes, the next step for express scripts (at least in my case), was to forward the prescription to their specialty pharmacy ACCREDO. Then, the pharmacy goes through a couple of days of checking that everything is Kosher on their end. Then, the pharmacist fills the prescription, making sure to contact the doctor if s/he has any questions about interactions, dosage, etc. After this is all done, Express Scripts will call you to schedule the exact FedEx delivery date (although they could not guarantee the time, at least in my case).

I hope this is helpful - I just didn't want you to wait before the delivery date is scheduled! :) (this is what I did, and it was a little nerve-wracking) :)

-- Edited by zavr on Monday 9th of March 2015 05:32:37 PM

Cinnamon Girl · Guru

Hi Bubble,

I hope you don`t have to wait much longer for your delivery, you must be keen to get started by now!

Ascites means a build up of excess fluid in the abdomen and is often a complication of cirrhosis. As an F3 you`re not likely to have symptoms of advanced liver damage, but I guess your doctor is just being thorough. Good news that no tumours were detected.

Let us know when you have more news!

bubble · Senior Member

Cinnamon: That VL has not changed much since 2009. Always less than 250k. I am F3 Fibrosis. My ultra sound detected a "Kidney Syst" Which Doc said is common. My blood work after I get onboard will include Acesites(?) test for liquid. No cancer detected. Still waitin for the Mailman. I wrote to Abbvie site and got a phone call back within four hours! I could not hear it but I think it was a support nurse. I am going to resubmit my info and try again. Thanks for the help as always.

Cinnamon Girl · Guru

Hi Bubble,

The number I was talking about, `15 iu/mL`, means 15 `international units` per `milliliter` of blood, and it`s a way of expressing the quantity of the viral load.

Yes, your viral load is great! Was that your pre-tx result? Great news from Abbvie too, it`s all looking good!

bubble · Senior Member

My test showed 225,000. What does the figure you state mean in laymen's terms? Does that mean in millions Cinnamon? Mine is thousands. I had the Doc repeate it to me. Also ! Abbvie contacted me yesterday within hours to approve my co pay assistance. Mine is free. Thank you God ! Thanks all!

Bubble.

Cinnamon Girl · Guru

Ok, just thought I`d check to make sure.

Well try not to be downhearted, your dad`s viral load is too low to actually put a number on it even though the test can detect that it`s still there. The test isn`t sensitive enough to measure a quantity of virus below 15 iu/ml which is why it`s expressed in that way.

He`s really near to being undetected though, and we can see from the changes in his lab results that the treatment is working.

Hang on in there...he`s doing just fine! smile

llory · Member

Hi Cinnamon Girl thanks for your interest, he is just detected and vl is <15 .

Cinnamon Girl · Guru

Hi Ilory, I`m sure your dad will do a lot better this time around, and the treatment is obviously working going by his lab results.

So just to check, did it say < 15 `detected` for his 5 wk viral load result or were you actually told it was still detected?

I`m glad he`s having no side effects and that must be a relief for both of you.

Best of luck and thanks for the update!

llory · Member

He have had no side effects so far but he isn't too excited since after being a lifetime non responder once he cleared on peginf-riba only to relapse immediately after finishing and it was too devastating for him and the whole family.
I hope this time it will be different.
Good Luck to Everyone on here

-- Edited by llory on Friday 6th of March 2015 05:17:28 PM

-- Edited by llory on Friday 6th of March 2015 05:17:52 PM

Tig · Admin

Hi Ilory,

It's exciting when the viral load is undetected quickly but that isn't always the case. I have seen some wait as long as week 6-8 to drop to UND. The overall effectiveness for your Dad's protocol is 97% according to Abbvie and the clinical trial data showed a very low chance of virologic failure while on treatment. So be confident that he's simply one of the people that is taking the extra time to clear the virus. His blood work looks good. The Hgb and RBC's are dropping due to the Ribavirin. That tells us that it's working its magic. Anemia is common on Riba. Give it a bit more time and that viral load is going to be history! Give him my best...

Tig

zavr · Veteran Member

Dear Ilory,

I'm sorry that the 5wk result did not bring in those beautiful 3 letters: UND. However, it is nice to see that your dad went from nearly 600K to such a low VL number, the fanciest test cannot reliably quantify it! Also, his liver is continuing to improve beautifully, and his hemoglobin is holding steady. Holding fingers crossed for great news in the upcoming weeks.

How has he been feeling? Has he noticed improvements in symptoms?

llory · Member

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

bubble · Senior Member

Thank-you Zavr. I will post here when I receive my Rx. I signed on to the Abb-Vie site for the co-pay program. Hoping we become the "Poster Children" Lol !

Bubble.

zavr · Veteran Member

Hi all,

I posted an update as a reply in another topic, but thought I would share here as well.

First of all, for anyone starting Viekira Pak treatment (or even still waiting for approval), I suggest submitting a "benefits verification" form through the AbbVie support system (see green link my signature line). They have copay assistance, as well as extremely kind nurses to help along with any questions you might have during treatment. I cannot recommend the nurse support program highly enough!

I am finishing up the first week of treatment tomorrow (YAY!), and the side effects have been extremely minimal. I was really impressed with VP packaging: it is extremely clear, so it is easy to adhere to treatment, despite the relatively high number of pills. Regarding side effects, there is really not much to write home about, except for some nausea on the first day or 2, and a small headache here and there. Hmmm... I am realizing that this will be a very short post, as there is really not much to report as far as side effects. :) One consistent thing is that I do a little leap and a dance after taking my am dose every morning, and I am very grateful to Viekira Pak for this side effect!

I hope everyone is doing well! I will keep you posted with progress!

-- Edited by zavr on Thursday 5th of March 2015 09:50:22 PM

Tig · Admin

Congrats again Lilbit! So cool to hear your great news. Your liver is doing the happy dance! Do ya feel it? Good luck!

Tig

zavr · Veteran Member

CONGRATULATIONS!!! What fantastic news!!! :)

-- Edited by zavr on Tuesday 3rd of March 2015 06:48:19 PM

lilbit · Senior Member

Just for encouragement to you starting Viekira Pak. I was on the study for Viekira Pak and just got my labs back for EOT+12. I am still undetected. It does work.

zavr · Veteran Member

RE: All Aboard for the

Tig · Admin

RE: All Aboard for the "Viekira Pak" Treatment Train: Enjoy the Ride for 12 or 24 weeks!

Matt Chris · Guru

Hey Natalia

Not imposible, actually our bodies can react within minutes to meds. I remember taking the same drugs with Ribavirin and feeling the effects within 30 minutes after dosing.

Your body will adapt and things will be better in a week or so.

matt

zavr · Veteran Member

RE: All Aboard for the

Cinnamon Girl · Guru

RE: All Aboard for the "Viekira Pak" Treatment Train: Enjoy the Ride for 12 or 24 weeks!

llory · Member

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 his 5 weeks on Viekira + RBV:

3 week
Vl Rna    18
Ast          46
Alt           31
Alb          44,3
Bil tot      1,9
Plt            92
Wbc         5,5
Rbc          3,9
Hg           13,3

5 week
Vl Rna    ??
Ast          35
Alt           23
Alb          45,9
Bil tot      1,6
Plt            100
Wbc         5,2
Rbc         4,10
Hg           14

Well, that's it. I am hoping for the best

Tig · Admin

Hey Lilbit,

I'm excited to hear you're almost at your destination! The way I see it, you have a lifetime ticket on this train. But you move from the Locomotive to the Club Car and from there you can simply enjoy the ride. Your advice and wisdom will always be needed and certainly welcome as long as you're willing and able! Fingers crossed!!!!!

Tig

lilbit · Senior Member

Sheesh, I am almost off the train before it ever took off. Wish it had been here sooner. I go for my end of treatment +12 next Thursday and am really scared. Was undetected after 4 weeks so am hoping it has held. I am totally involved with a drug/alcoohol treatment facility as a volunteer so have a bunch of folks needing treatment that have been watching me closely. I want so bad to show them it can be treated successfully with this or any of the others that are working so well. Good luck to anyone starting the Viekira Pak. It is extremely easy even with the riba. I will be around to support everyone and answer any questions if I know the answers. Hugs everyone.

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