Author Topic: Starting Viekira and Ribavirin tomorrow - very nervous!! (Read 17887 times)

ekaraena · « **on:** February 12, 2015, 01:07:39 pm »

Hello all,

Nice to meet everyone and I appreciate all the great posts that others have shared. I am new to this site so thanks in advance for reading.

I am a 36 y/o woman and was diagnosed with HCV in 1996. I have never been treated before because I wanted to wait for something other than interferon to come out.

My doctor prescribed Harvoni but, long story short, I've been denied twice and have decided to proceed with Viekira / Riba combo because the insurance has (finally) agreed to cover it.

I've always been a believer in natural medicine and to be honest, the more I read about ribavirin the more freaked out I become. I am worried that I will no longer be able to work full time, or exercise, or have a social life - from the horror stories that I've heard it sounds like I could end up being really ill for the next 3 months, and I don't know if I'm strong enough emotionally to deal with a total lifestyle change. In particular, if I'm not able to exercise I'm concerned I will become depressed because it is a huge part of my life.

I know each person is different and I'm not asking for medical advice or anything - just looking for support and curious is others have tried Viekira Pak combined with Ribavirin and what the experience was like. I was SO excited to finally treat my illness but now that I have the medication in my hand and I'm preparing to start, I'm realizing I'm pretty terrified.

Thanks,

Raena

lporterrn · « **Reply #1 on:** February 12, 2015, 03:01:17 pm »

I can't speak to the Viekira, but I can to the ribavirin. I did riba twice - the first time for 48 weeks with peg, The 2nd time for 12 weeks with Harvoni. I am not a fan of ribavirin, but it is doable. I don't like going to the dentist, but I do it. I worked, worked out, even went dog sledding during treatment, It starts off slow, and the intensity is gradual, so like a frog stuck in cold water, then the heat is applied, you get used to it. The main thing is good side effect management - that makes all the difference in the world. It's like Novocaine for dental work - I wouldn't do ribavirin without help. What that help will be you will know. For me, it was one magic pill that fixed everything - atarax (hydoxyzine) - My doc prescribed it for a rash, but it fixed the insomnia and anxiety.

And stay close to others on the forum - they can give you their tips.

You are young, and will probably find this much easier than some of us who are in our 60s and 70s. But until you take it and find out for yourself, being scared is human.

ekaraena · « **Reply #2 on:** February 12, 2015, 03:38:40 pm »

Thank you Lucinda, I really appreciate the feedback and also the suggestion about Atarax. It is great to hear that you were still able to exercise, etc. I'm lucky to have this opportunity to hopefully eradicate the virus, so I am going to try and stay positive and not over-think the side effects. Maybe they won't even be that bad. Fingers crossed!

sapphire101 · « **Reply #3 on:** February 15, 2015, 10:03:46 pm »

You are not alone Ekaraena!
I will start the same regimen this week. I too am on the Viekira Pak with riba because this is what my insurance will cover. Ribavirin will be the culprit behind most side effects and we just need to keep our eye on the prize.

Lucinda did you take atarax daily or only when needed? I am vulnerable to insomnia, anxiety, and itchy skin and I fear these will be my new best friends when I start the medications.
Any other tips for us?

lporterrn · « **Reply #4 on:** February 16, 2015, 01:15:49 pm »

Sapphire - I started with 1/2 of a 25 mg atarax (hydroxyzine) at bedtime. Took it regularly, and then rapidly moved to a 25 mg. Eventually I took 1/2 of a 25 in the morning. I started slowly, because I am the type of person who is very close-minded about meds, esp if they make me groggy.

Here are a few more tips: http://www.hepmag.com/articles/2512_10798.shtml

And then there are my books which have lots of tips - I am somewhat awkward with self-promotion, but you can read a lot for free on Amazon.

Towards the end I used very low doses of ativan for anxiety. I was nervous about it because I have been in recovery for a long time and didn't want to risk that, but I was able to work this out with my doctor and sponsor, and it wasn't a problem. Truthfully, the atarax helped my anxiety much of the time.

zeena · « **Reply #5 on:** February 17, 2015, 06:56:46 pm »

hi aekarena,
While I was on riba, i ran almost every ,morning. my doc said my blood pressure was like a teenagers. keep on exercising on riba and rest when you need to. most importantly, drink more water than you ever thought possible . especially after exercising.I am now svr 12. and for genotype 3 ,which I am, that is cured in my docs book. I was treatment naive, and even lost one of my sovaldi doses. congratulations on getting cured at such a young age!! i am 56. and feel a dramatic difference in my health from before treatment till now.

ekaraena · « **Reply #6 on:** February 18, 2015, 04:25:53 pm »

Thanks Sapphire and Zeena for your replies. Saphhire, let's stay in touch - I'll be curious to hear how your experience unfolds since we are on the same protocol.

I'm currently on day #6 and I've been a little spaced out and tired, and had 1 dizzy spell on the first day. Other than that, so far I've had no issues at alll! WAY more manageable than I imagined. I've heard the side effects can start to build over time so I'm not going to assume it will stay this way forever, but so far, so good.

Also, Zeena, that's great to hear you were able to exercise consistently, that is very encouraging. I'll try to drink tons of water. I went running the other day and had to pace myself but all in all it was fine. I actually study acrobatics and circus arts, which I love, but I'm accepting the fact that I may not be able to hang upside down and swing from trapezes all the time.

No big deal to take a short break in the grand scheme of things.

sapphire101 · « **Reply #7 on:** February 18, 2015, 10:31:42 pm »

Day #2 for me and day #6 for you ekareana and we are similar in how we are experiencing being 'under the influence' of our meds. I am a little spaced, maybe a little fatigued, and maybe a little itchy/sniffley. Totally tolerable though and I spoke with my nurse navigator tonight and she said the side effects are not cumulative - they do not build over time according to the clinical trials. Good news there.

I do a bit of yoga and power walking. Water intake is increased if for no other reason than I must swallow a lot of pills daily. I am being mindful of health eating and fluids

Any sense of how often you will get labs? I will have a draw at 4 weeks, at end of treatment, and 12 weeks post treatment end.

ekaraena · « **Reply #8 on:** February 19, 2015, 10:52:43 am »

Wow - that's great to hear what your nurse navigator said. Hope that's the case! If so, I can totally deal with this. I was making it out to be a lot worse in my head before getting started. So grateful this medication is available...

I have a doc appt scheduled for the 4-week mark as well, then from there I am not sure what schedule he had in mind for future labs. I am the first person in my doctor's practice to be prescribed Viekira so he said I am the "guinea pig" -

Red Hen · « **Reply #9 on:** February 19, 2015, 07:23:56 pm »

Hi, Ekaraena, Zeena, Lucinda and Sapphire. Maybe I can help out a little. I completed 12 weeks of Viekira pak with ribavirin a month ago last week. I am on a 5 year drug study! Long Term Guinea Pig.

Itching was my worst symptom and the good news is that it can be controlled. I heard that some people have more trouble with nausea and some with tiredness. I was tired, too, but that didn't bother me as much. Everybody says drink water. Yes! Water! For me, exercise, like walking and jogging a little bit is helpful. Also, be kind to yourself. Your health is your #1 concern right now. If you need to rest more that's fine. Hang in there.

ekaraena · « **Reply #10 on:** February 20, 2015, 02:49:32 pm »

Thanks Red Hen for your reply. Up until yesterday was feeling very positive and like the side effects were completely manageable. Yesterday things really changed though! Got hit with some major anxiety, was unable to sleep most of the night, and currently feeling very dizzy, groggy and disoriented. Yikes....hoping it does not stay like this; if so, I can deal with it but I can't see how I will be able to work or do much of anything!

Sapphire, how are things with you? We're on a similar schedule... Also, I don't want to worry anyone by sharing the details of my experience because everyone is different and this stuff could be having a unique affect on me. Just needed to vent I guess - feeling pretty bummed today, and not nearly as optimistic as before, but nonetheless determined to complete this treatment.

Red Hen · « **Reply #11 on:** February 20, 2015, 04:56:32 pm »

Ekaraena, don't get discouraged. Let your doctor know about trouble sleeping and anxiety because I think there are ways to manage that. Some days are better or worse than other days. I hope you feel better tomorrow. For me, it got easier to cope with symptoms after the first 4 weeks. Be sure to eat enough with the pills as well as drinking water.

sapphire101 · « **Reply #12 on:** February 20, 2015, 10:24:50 pm »

Hey Raena,
See Lucinda's advice. Atarax sounds like the way to go with antianxiety and anti itch properties. Call your practitioner STAT to see if this med is approved to take on our Viekira pak regimen.

Yes we are all different, but please keep sharing. It somehow makes it better to hear how others are doing. Together we are not so alone and I am comforted knowing you are out there.

On day 4 my side effects are minimal. A little itching, a little fatigue, some aches. It is really hard to judge if I am experiencing insomnia because I have suffered from sleep problems all my life.

Zero anxiety because I am so frickin happy to finally have the opportunity to clear this virus. If anything I am a bit hyper and maybe that is a side effect???

I too have increased my water intake on the advice of everyone in this forum. Also improved my diet and exercise. I am also putting boundaries up at work and not pulling overtime. Basically all the things I should have been doing years ago!

Red Hen · « **Reply #13 on:** February 21, 2015, 12:01:20 pm »

Sapphire, I really like what you wrote about putting up boundaries at work. That is so important. I declined to take on new projects during my treatment. Didn't explain why, either! Every one was understanding. I am freelance so it may have hurt me a little bit but not as much as sloppy work would have.

aveinc · « **Reply #14 on:** February 22, 2015, 12:48:23 pm »

Im really happy to see there are people posting about Viekira and Riba. I am on my 24th day and it is a race for the tortoise.I to am experiencing rashes and bad itching,anxiety,depression and insomnia.I havent used any thing to help my side effects yet. I guess I really wanted to understand what i was dealing with.On a positive note I have really tuned up my diet and most importantly my mind. We are all very lucky to have a chance to rid our bodies from this.It helps to know your not alone and remember "THIS TO SHALL PASS"

sapphire101 · « **Reply #15 on:** February 22, 2015, 06:03:17 pm »

Love it Aveinc 'this too shall pass' will be my new mantra.
When did your side effects kick in? Did they start slow and get worse or hit all at once? Both Ekaraena and I are a few weeks behind you in our treatment. I have experienced itch, insomnia, and fatigue. All manageable so far.

sapphire101 · « **Reply #16 on:** March 03, 2015, 01:26:13 am »

Ekaraena and Aveinc,
anything new to report?
I would like to hear how you are doing.

aveinc · « **Reply #17 on:** March 03, 2015, 12:35:34 pm »

Saphire, Thanks for asking.I'm hanging in there.My rashes were the most intense during week 2 and 3. I am currently 33 days into my 84.The anxiety and insomnia continue as the dry skin but all things considered, its a small price to pay when I read about so many people fighting to save there liver-"LIVES".In re guards to the itching my body did not fair well with the virus it played hell with my skin and on a positive note the same places on my lower arms legs and hips that were harmed before I began treatment have now all cleared up.I wish you all the best and my prayers go out to all those fighting with their insurance companies or trying to find coverage perhaps things will change........"THIS TO SHALL PASS"

Red Hen · « **Reply #18 on:** March 03, 2015, 05:06:59 pm »

Good to hear how you're doing, Aveinc and Sapphire. It does pass. But, more slowly than I'd like! Getting impatient for my 12 week post tx. exam and labs. Not until April 9th and then waiting for lab results. I'm still experiencing some itching but nothing like when I was taking the ribavirin. I have seasonal allergies and that is part of what I'm dealing with now. Otherwise, pretty chipper! Best to you all!

aveinc · « **Reply #19 on:** March 03, 2015, 06:12:32 pm »

Saphire, Thanks for asking.I'm hanging in there.My rashes were the most intense during week 2 and 3. I am currently 33 days into my 84.The anxiety and insomnia continue as the dry skin but all things considered, its a small price to pay when I read about so many people fighting to save there liver-"LIVES".In re guards to the itching my body did not fair well with the virus it played hell with my skin and on a positive note the same places on my lower arms legs and hips that were harmed before I began treatment have now all cleared up.I wish you all the best and my prayers go out to all those fighting with their insurance companies or trying to find coverage perhaps things will change........"THIS TO SHALL PASS"

sapphire101 · « **Reply #20 on:** March 03, 2015, 09:39:57 pm »

Thank you so much for the update Aveinc.
Have you considered atarax for your intense itching/insomnia/anxiety? Per our moderator it is the magic bullet for all three. At least you seem to be getting better.

Do you have any lab numbers to share? I would love to see yours and at 33 days in you must have some by now. Our cohort group is still small and I want back up from my forum buddies that our V-pak treatment numbers come done as fast as the harvoni crew. I had my first draw yesterday and as soon as I know I will post.
ps thanks for the prayers I will take all I can get!

aveinc · « **Reply #21 on:** March 04, 2015, 02:40:38 pm »

Saphire,I am on location and wont see my Doc. for another 10 days, I had my blood drawn at 24 days and I was undetectable I am going to ask for some help when I see him. I hope my info gives you hope.The real test is finishing and maintaining SVR for 24 weeks. I will keep you in my prayers.

sapphire101 · « **Reply #22 on:** March 04, 2015, 10:32:33 pm »

Phone it in Aveinc. 10 days is waaaaay too long to suffer.

Thank you so much for sharing that you were undetectable at 3 weeks and 3 days. For sure it is end of treatment SVR and then at 24 weeks that is the final word, but it is just nice to hear that the meds are working.

Ekaraena how are you doing? You were dealing with side effects on your last post.

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Author Topic: Starting Viekira and Ribavirin tomorrow - very nervous!! (Read 17887 times)