Author Topic: Just Started Viekira Pak w/ Ribavirin What to expect (Read 28688 times)

jpinn1952 · « **on:** May 04, 2015, 09:04:10 pm »

Hey everyone, I'm new to the forum. I just started Viekira Pak with Ribav 2 days ago. I'm on the 12 week plan. was wondering what I can expect in the short run. had a mild headache late yesterday and early this morning. Seems to be gone.
I am feeling very very weak, like on one of my worst Hep C days in the summer! very mild itchy skin, like bugs are crawling on me!

How long does the fatigue Last?

the other sides???
thank you
jpinn1952

Philadelphia · « **Reply #1 on:** May 05, 2015, 05:52:24 am »

Hi jpinn

I'm on the 24 week V Pak + riba. I could rehash my side effects and treatment ups and downs - there have been a few! But to save me the agony of typing it all out again, I've been blogging my treatment and will just direct you to that, if you do t mind!

I deal with managing treatment, sx, blood test results, updates and often go off on a meandering philosophical bent.

I will say I found the itchiness to be largely psychosomatic for me. But I know someone here has managed it with a careful selection of antihistamines.

The only time I got a headache it was a sign I hadn't had enough water. Water is your friend and constant companion.

Fatigue comes and goes for me. But when it hits it hits hard. It's the riba.

Anyway,
March archives,

http://blogs.hepmag.com/gracecampbell/2015/03/

April archives

http://blogs.hepmag.com/gracecampbell/2015/04/

May

http://blogs.hepmag.com/gracecampbell/2015/05/

Start at the bottom, skim to find what's relevant to you and work your way from the bottom of the page to the top.

Or ignore it altogether!

There are a few Viekirians among us.
We are happy to help where we can.

jpinn1952 · « **Reply #2 on:** May 05, 2015, 05:01:24 pm »

Thanks so much Philadelphia. On the water, I guess that why the pharmacy sent me a liter bottle

.

And I started checking out your blogs. That is a lot of work!!! Please keep me posted on yout journey.

sapphire101 · « **Reply #3 on:** May 05, 2015, 10:29:48 pm »

What Philadelphia says Jpinn. All good advice.

My itchiness it much like how you are describing creepy-crawlies. Worse in the evening and it really hit one time on a long plane ride home. The guy in the seat next to me must have thought me mental or possibly carrying a good case of scabies. I could not stop fidgeting the more I tried the worse it got.

Benadryl/diphenhydramine 25 mg one at night helped me a lot and one of our moderators swears by atarax. Ask your doc what is recommended. The right balance could mean a huge difference for you over the next 12 weeks.

jpinn1952 · « **Reply #4 on:** May 06, 2015, 12:19:26 am »

Thank you Sapphaire ! Are those both OTC or Rx?

Philadelphia · « **Reply #5 on:** May 06, 2015, 04:53:24 am »

Benadryl is otc. Not sure about the other.

jpinn1952 · « **Reply #6 on:** May 06, 2015, 02:19:26 pm »

Thank you both. well here is where i'm starting
Week     Start
Date    5/3/2015
VL    3,634,765
GGT   105
AST   20
ALT   25
Fib Score   0.4
Fib Stage   F1-F2
ALPHA FETOPROTEIN, TUMOR MARKER   6.8
RNA Genotype   1a

Philadelphia · « **Reply #7 on:** May 07, 2015, 03:31:57 am »

Apart from your VL your numbers are way better than mine when I started. Way better. My ALT was 137, my AST was 185. All your numbers are better.

Good luck!

dearprudence · « **Reply #8 on:** May 13, 2015, 06:02:57 pm »

You've got company. Just started VPak and Ribaviron on Monday 5/11. I take a 20mg omeprazole before breakfast to help with any gastro problems. I also take B12 and vitamin d and drink lots of water. my numbers are very close to yours - AST 19 ALT 26 Stage 1-2 Geno 1a
I have been infected for over 40 years and have been lucky with the slow progression.
I am treatment naieve - never wanted interferon and was fortunate enough to be able to wait for treatment. Am eating at least 3-4 egg whites a week to help combat possible anemia.
Been with same doctor for over 15 years and he was one of the researchers on this drug.
Good luck!

FutureThinker · « **Reply #9 on:** May 13, 2015, 06:49:40 pm »

Hi Viekirians and thank you for using this site to help those of us anticipating starting treatment have a better understanding of what the Viekira is like. I will watch this space, as my insurance will approve Viekira but is balking at Harvoni, so I may well end up a Viekirian, too, in the near future.

Thanks again!

KimInTheForest · « **Reply #10 on:** May 13, 2015, 08:27:39 pm »

Quote from: dearprudence on May 13, 2015, 06:02:57 pm

Am eating at least 3-4 egg whites a week to help combat possible anemia.

Hi @dearprudence. I am curious about using egg whites to combat anemia. How does that work? Not disputing it. Just never heard of this approach before and would like to know more. I too am on anemia-causing Ribavirin (Day 9 of a 12-week program of Harvoni+Riba).

best,
kim

dearprudence · « **Reply #11 on:** May 13, 2015, 09:12:10 pm »

hi kim, from what I understand an egg contains about 1mg of iron and is antioxidant and protein rich - the yolk contains the cholesterol. Since I am vegetarian, egg whites were suggested by my doctor. I have read differing opinions on this on the internet, but I am putting my faith in my doc! Hope that helps.

KimInTheForest · « **Reply #12 on:** May 13, 2015, 10:19:27 pm »

Quote from: dearprudence on May 13, 2015, 09:12:10 pm

hi kim, from what I understand an egg contains about 1mg of iron and is antioxidant and protein rich - the yolk contains the cholesterol. Since I am vegetarian, egg whites were suggested by my doctor. I have read differing opinions on this on the internet, but I am putting my faith in my doc! Hope that helps.

Thanks for the reply @DearPrudence

My understanding is that the iron in eggs is in the yolk. According to this article, 94% of an egg's iron is in the yolk, and 6% is in the white: http://www.ahealthiermichigan.org/2011/10/11/the-nurtional-value-of-egg-whites-versus-egg-yolks-what-do-you-use/

But perhaps even more importantly… it is my understanding (and anyone feel free to correct me if I am wrong) that we should not try to increase our iron intake while on ribavirin, because that is not the type of anemia that ribavirin causes. and if we take iron supplements (or even make an effort to eat lots of iron rich foods) while on ribavirin, we could end up in an iron overload position in terms of blood levels of iron, which would then end up in the liver, and that can be damaging.

Ribavirin causes hemolytic anemia, which means that many of our red blood cells manufactured in our bone marrow explode/disintegrate before they even get out of the starting gate and begin circulating in our blood. So our anemia isn't due to a lack of iron in our body, but rather to a lack of red blood cells to transport the iron (or rather the oxygen-carrying hemoglobin it produces) to various organs and tissues.

I have read a couple of studies (cannot find links right now) that suggest that the cause of this hemolytic anemia with ribavirin treatment is that our red blood cells are chock full of ribavirin, placing enormous oxidative stress on the cell and causing the cell wall to rupture. I read two different studies where they tested the benefit of Vitamin C and Vitamin E supplementation during TX with ribavirin to see if those 2 anti-oxidants taken together would slow the progression of hemolytic anemia during treatment, and they did. Not a lot, but onset of anemia was later and less severe in people on Vit C/E than those without. The quantities used were 2000 mg of Vit C & 1000 IU of Vit E in one study. And a little less in the other study: 1000 mg of Vit c & 800 IU of Vit E.

When I initially read about that, I got very excited and thought I would give myself those supplements during treatment. But I decided to be a purist and not give my body or liver any additional stuff to deal with and process during treatment.

I am just researching these things like you and everyone else. I have no special knowledge.

Good luck to you Prudence!

kim

dearprudence · « **Reply #13 on:** May 14, 2015, 08:18:23 am »

yes Kim - whites offer about .03 mg of iron so I don't think iron is the point. I will be speaking with my doctor soon and will ask why egg whites. Didn't think to ask at the time due to so many other questions and being that I eat about 3 eggs a week anyway!
I see that you are ahead of me in treatment - any surprise side effects that you've noticed?
Thanks - Prudence

Philadelphia · « **Reply #14 on:** May 14, 2015, 09:32:41 am »

My specialist told me there wasn't much diet wise I could do for my anaemia, as it was haemolytic anaemia. I've felt much better now my hg is sitting around 115-117.

I was slammed early in treatment but things seem to be stabilising for me. Missed the itchiness so far, also the headaches. Fatigue has changed to tiredness with a reduction in work hours.

KimInTheForest · « **Reply #15 on:** May 14, 2015, 12:50:01 pm »

Quote from: dearprudence on May 14, 2015, 08:18:23 am

yes Kim - whites offer about .03 mg of iron so I don't think iron is the point. I will be speaking with my doctor soon and will ask why egg whites. Didn't think to ask at the time due to so many other questions and being that I eat about 3 eggs a week anyway!
I see that you are ahead of me in treatment - any surprise side effects that you've noticed?
Thanks - Prudence

Hi Prudence. Do tell us what your doctor says about that if you ask him about his egg white recommendation. Will be useful for all of us to know.

I am on Day 10 now (of Harvoni+Riba, 12-week program). No significant side effects or problems yet. Let's hope it stays that way!

It is true what everyone here says about drinking lots of water. That alone will reduce or eliminate many of the sides. I don't know that it would have any effect on the riba-related anemia though.

Best of luck to you Prudence!

kim

FutureThinker · « **Reply #16 on:** May 14, 2015, 01:07:48 pm »

Hi and thanks to all for this conversation. I, too, have read that the type of anemia is hemolytic -- I haven't researched it yet, as I am still fighting for the Harvoni. But I appreciate the info, as I may well end up taking the V + R.

Kim, what is the reason you're taking the Harvoni + Riba? Genotype? I know for mine (1a), the riba has to be taken with the V, but I thought for 1a w/ Harvoni, the riba was not necessary.

Good info, thanks again!

KimInTheForest · « **Reply #17 on:** May 14, 2015, 02:25:59 pm »

Quote from: FutureThinker on May 14, 2015, 01:07:48 pm

Kim, what is the reason you're taking the Harvoni + Riba? Genotype? I know for mine (1a), the riba has to be taken with the V, but I thought for 1a w/ Harvoni, the riba was not necessary.

Hi Future Thinker. My genotype is 3a (see my sig file at bottom). I am doing 12 weeks of Harvoni+Ribavirin as part of an open label clinical trial for treatment-naive genotype 3 people in Canada. Some Geno 1 people also have Ribavirin added to their Harvoni if they have cirrhosis and/or have relapsed/not responded to previous treatments. But most Geno 1 people without those issues seem to be put on 8 or 12 weeks of Harvoni only.

Best of luck to you Future Thinker!

kim

dearprudence · « **Reply #18 on:** May 14, 2015, 09:09:43 pm »

Quote from: KimInTheForest on May 14, 2015, 12:50:01 pm

Hi Prudence. Do tell us what your doctor says about that if you ask him about his egg white recommendation. Will be useful for all of us to know.

I am on Day 10 now (of Harvoni+Riba, 12-week program). No significant side effects or problems yet. Let's hope it stays that way! It is true what everyone here says about drinking lots of water. That alone will reduce or eliminate many of the sides. I don't know that it would have any effect on the riba-related anemia though.

Best of luck to you Prudence!

kim

Yes Kim, I will - best to you too! What a journey we are all on!

Philadelphia · « **Reply #19 on:** May 15, 2015, 04:25:03 am »

There's a bit of info out there on RBV and haemolytic anaemia. Here's one paper out of many
http://www.ncbi.nlm.nih.gov/pubmed/17168855

FutureThinker · « **Reply #20 on:** May 15, 2015, 11:40:25 am »

Hi Kim, and thanks for the clarification. Best of luck to you, too!!! We all want to see this virus eradicated and the trials are such a big part of that goal.

Philly -- I see that article by NIH is from '06, but good info. Thanks.

baby1315 · « **Reply #21 on:** May 15, 2015, 01:19:46 pm »

Just finished my 6th week on Viekira pak w/Ribavirin. I experienced more headaches than usual and raised bumps on both my arms. It does itch all the time. Hopefully the bumps will go away when my 12th week is up. This has been my 6th treatment of trying to cure my Hep C. I failed all prior treatments. Hoping this one will work.

Good Luck

FutureThinker · « **Reply #22 on:** May 16, 2015, 05:32:57 pm »

To baby1315: I truly hope and pray this treatment will be the one. Someone on this forum has suggested Benedryl for the itching and another medication. The Benedryl is OTC, the other wasn't.

Red Hen · « **Reply #23 on:** May 16, 2015, 08:02:06 pm »

Hi, Newbies. Welcome to Club V. I was one of the first people here to use this drug. I did the Vieira-pak plus ribavirin for 12 weeks. HCV still undetectable after 12 week post treatment. Going on to 24 post in July. Had the skin itch something awful. Doctor prescribed O.T.C. benadryl, and it saved my life! Well, it made me feel much better. Be sure to drink tons of water. Hydration is key. I feel super good right now! Energy like I haven't had before! Best of Luck to you all. It is a long road.

dearprudence · « **Reply #24 on:** May 18, 2015, 01:18:51 pm »

Quote from: KimInTheForest on May 14, 2015, 12:50:01 pm

Hi Prudence. Do tell us what your doctor says about that if you ask him about his egg white recommendation. Will be useful for all of us to know.

hI Kim, spoke to my doctor the other day and it wasn't him who told me about the egg whites - oops! - it was the nurse practitioner and he didn't know why she suggested them. I will see them both in the beginning of June and will try to get an answer from the NP. In the meantime, 1 week down and 11 to go!

KimInTheForest · « **Reply #25 on:** May 18, 2015, 01:25:02 pm »

Congrats on finishing your fist week Prudence!

I am just finishing Week 2 of 12 (Harvoni+Riba in my case). No real problems with sides so far. How are you doing?

Good luck!

kim

dearprudence · « **Reply #26 on:** May 20, 2015, 10:34:58 am »

Hi again Kim - no side effects to speak of here either - doing good - happy you are too.
went for first week blood test on 5/18 - if any changes, I will post reults
best regards

michellemm · « **Reply #27 on:** May 21, 2015, 10:24:45 pm »

Quote from: FutureThinker on May 13, 2015, 06:49:40 pm

Hi Viekirians and thank you for using this site to help those of us anticipating starting treatment have a better understanding of what the Viekira is like. I will watch this space, as my insurance will approve Viekira but is balking at Harvoni, so I may well end up a Viekirian, too, in the near future.

Thanks again!

V-Pak + Riba are just as effective as Havorni. Same results. My husband has been on V-Pak for 12 weeks and he has 12 more weeks to go. He started with anxiety that was not drug related. He is a type of person who cannot tolerate medications well. He had no problem with taking the 10 pills per day. The only side effect he had was a bad rash. The doctor prescribed hydrocortisone combined with steroid cream. The rash went away after a week and did not return. Also, cold shower is wonderful. Oat meal soap helps a little. Rash is common with all medications. Your body is trying to get rid of toxins. The problem is you will have too many blood tests. Anemia is another problem.
Now, let me tell you about the positive side effects. He used to wake up 10 times every night with leg cramp, nerve pain on legs, low energy, etc.... He could not even open a door or a jar. All gone after the second or third week.
Good Luck!!!

Herbinator53 · « **Reply #28 on:** May 26, 2015, 01:01:05 pm »

Started Viekira Pack/Ribavirin Jan 2015. Five weeks into the treatment experience anemia (blood count 6 normally its 12 to 14). Had to get transfusion. Had to stop Ribavirin till further notice. In my case heart condition prevents me from taking Ribavirin causes me extreme exhaustion and respiratory problems.. This drug has lots of side effects. I am in my eighteenth week six to go. So far the good news Viral count undetectable. I was diagnosed with hep C 2005 I am type 1A with chronic hep C with cirrhosis of the liver, diabetes 2 and heart condition.If anyone has information by what percentage in the cure will drop without Ribavirin I will be most appreciative. Will complete treatment first week of July. I wish everybody good luck and good health.

Mike · « **Reply #29 on:** May 27, 2015, 07:52:06 am »

Hi Herbinator,

I've been on RIBV twice and it beat the heck out of me. I'm glad you're undetected and hope you stay that way.

Also, welcome to the forum.

Best wishes, Mike

dearprudence · « **Reply #30 on:** June 01, 2015, 11:15:42 am »

Quote from: KimInTheForest on May 18, 2015, 01:25:02 pm

Congrats on finishing your fist week Prudence! I am just finishing Week 2 of 12 (Harvoni+Riba in my case). No real problems with sides so far. How are you doing?

Good luck!
kim

hi Kim - clarification on the egg whites - spoke with NP - egg whites help with the regeneration of tissue not with anemia.
Hopefully will help to regenerate healthy liver tissue.
Meanwhile, 3 weeks down, 9 to go. AST and ALT down to 8 and 12.

KimInTheForest · « **Reply #31 on:** June 01, 2015, 01:26:40 pm »

Quote from: dearprudence on June 01, 2015, 11:15:42 am

hi Kim - clarification on the egg whites - spoke with NP - egg whites help with the regeneration of tissue not with anemia.
Hopefully will help to regenerate healthy liver tissue.
Meanwhile, 3 weeks down, 9 to go. AST and ALT down to 8 and 12.

How interesting about the egg whites. Good to know!

kim

smadak · « **Reply #32 on:** June 01, 2015, 05:09:01 pm »

Hi everyone, I've been on Viek + riba for 10 days now, this is my first post but I was reading this thread before ever starting the meds and everyone's posts have been very helpful/informative.

I'm not experiencing any side effects so far, besides this intense sore throat I've had the past 2 days but that's not a listed side effect so I'm assuming it's unrelated... My doc said that because I'm so young and have no liver damage at this point, there's a chance I may experience no side effects even if/when I do become anemic... I have my first check up on meds on thursday so we'll see what the rbc count is. I'd love it if I manage to sail through this symptom free but I'm skeptical of that actually being the case. From what I'm seeing through everyone's posts, it seems like side effects tend to pop up several weeks into treatment. So I guess we shall see.

KimInTheForest · « **Reply #33 on:** June 01, 2015, 06:27:08 pm »

Welcome @smadak, and good luck to you! Some people have a much easier ride where side effects are concerned than others. It's all so very individual.

I am finishing Week 4 (of 12) of Harvoni+Riba, and no real problems so far. But it is true that some things, like the Riba-anemia, can take a few weeks to develop.

wishing you the best,
kim

dearprudence · « **Reply #34 on:** June 07, 2015, 12:19:42 pm »

Quote from: smadak on June 01, 2015, 05:09:01 pm

Hi everyone, I've been on Viek + riba for 10 days now, this is my first post but I was reading this thread before ever starting the meds and everyone's posts have been very helpful/informative.

I'm not experiencing any side effects so far, besides this intense sore throat I've had the past 2 days but that's not a listed side effect so I'm assuming it's unrelated... My doc said that because I'm so young and have no liver damage at this point, there's a chance I may experience no side effects even if/when I do become anemic... I have my first check up on meds on thursday so we'll see what the rbc count is. I'd love it if I manage to sail through this symptom free but I'm skeptical of that actually being the case. From what I'm seeing through everyone's posts, it seems like side effects tend to pop up several weeks into treatment. So I guess we shall see.

Hi smadak, Kim is right, very individual, but I have a dry throat and dry cough (not sore per se) - saw doc on Thurs and was told it could be from Riba - drink plenty of water and use throat lozenges - I love Ricola mixed berry with vitamin c. Good luck to you!
I am 4 weeks down - 8 to go on Vpak Riba. Waiting for VL results from latest blood work.
Prudence

dearprudence · « **Reply #35 on:** June 07, 2015, 12:45:23 pm »

BY the way - my doctor always told me that HepC seems to progress faster as we get older. Now it seems that women who contract the disease at a young age progress slower than men. Interesting research.

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Author Topic: Just Started Viekira Pak w/ Ribavirin What to expect (Read 28688 times)