Author Topic: Viekira Pak+Riba Adventure (Read 11102 times)

Firechic19 · « **on:** February 15, 2016, 09:42:40 am »

Hello Everyone!
I'm new here and thought I would make a post and introduce myself. I just boarded the Viekira Pak train with Ribavirin riding passenger and let's just say I'd love to open a door and push Ribavirin out on the tracks! Ha! I'm on week 2 now. Week 1 I experienced skin burning on my face and neck as if I were sunburnt during the first few days. After that my appetite took a first class ticket to no mans land. I recently found that smoothies are amazing thanks to some friends and not only are they very nutritious but easy on the stomach and can be quickly made when taking meds. I'm also experiencing major brain fog. I keep forgetting what I'm doing, and just feeling confused a lot. My mind is always thinking and I find myself lost in thought a lot. It's like my long term memory is on repeat and my short term memory is stuck on stupid. I've laughed at myself so much lately. I guess it's good that I'm finding humor in it though right.. I've experienced what everyone refers to as Riba Rage too. I'm very irritable and just wow. Things that really didn't bother me before have became an anger trigger now. Found myself wanting to rip the neighbors car door off the other night and I won't even go there with the road rage I got this morning lol I have a 4 month old baby as well and she's recently learned to do this high pitch squeal and she does it a lot ..ALOT lol I found that headphones help (pink floyd) and when the anger hits I just distract myself. Most of the time just holding the baby or grabbing a toy and playing with her is very good medicine. It's been interesting that's for sure! This is only week 2 for me so I'm intrigued to what the next 10 will have in store.
Anyway that's my newly developed relationship with vpak and riba on what seems to be a train ride through hell..but next stop is Cured station!!!! Nice to meet all of you and I look forward to getting to know you guys.
(If none of this made sense it wouldn't surprise me, and I apologize..bare with me it's the brain fog haha!)

FutureThinker · « **Reply #1 on:** February 15, 2016, 01:26:16 pm »

Welcome to the forum, FireChic19 -- Just hang in there and use this forum for support, as there is a lot of it here! I will be starting Harvoni in the next 1-2 weeks, have some anxiety & excitement...... we just need to be thankful/grateful that there are now these miraculous DAAs to treat this monster and do the best we can with the sides -- THIS TOO WILL PASS. Staying hydrated seems to be a very common bit of advice, and I think there are some topics on this forum specific to Viekira, that you may find useful. Again, welcome and the future looks a lot brighter -- FT

Philadelphia · « **Reply #2 on:** February 15, 2016, 02:50:32 pm »

Hi fire chic, I rode the same train as you and experienced many of the same sx - mostly ribavirin related I believe. My specialist reduced my RBV dosage as it was not playing nicely with me.

I blogged my treatment (link below) and remember the appetite issue well early on. I wrote about it. I didn't offer any real advice, just moaned a bit.

Good luck with treatment, AussieRosa and Aust Hazel are both on VP+ RBV as are some others.

I did 24 weeks and I no longer have hep c. It works. Keep posting.

AussieRosa · « **Reply #3 on:** February 15, 2016, 09:50:15 pm »

Hi, FireChic. Welcome aboard. I'm 2 weeks ahead of you. Luckily I haven't had the Riba rage yet, but I've got the loss of appetite. I'm also finding if I don't apply moisturiser to my whole body every day I get patches of itchiness and dryness. My Hep C nurse practitioner advised me to moisturise as often as needed and not to become complacent and miss days. So far I've avoided any lasting rash by doing that.

Good luck to you, and I hope you keep posting and letting us know how you're traveling.
Rosa

Firechic19 · « **Reply #4 on:** February 15, 2016, 10:43:15 pm »

Hi Philadelphia, it's truly inspiring to hear from someone who's been through the same treatment and free of the virus! Congrats! That's a huge achievement!!! I can't wait til I'm able to say that!
AussieRosa, as of today my entire face has been extremely dry, I woke up this morning to my face and lips feeling tight and itching it was so dry. I've kept moisturizing all day and as of this evening my arms are starting to get itchy. Ahh the joys of treatment huh. I'll definitely continue to use moisturizer. I wasn't sure if that was in fact a SE or just my head trying to tell me it was. Best of luck to u as well! Here's to all of us having a fairly easy ride to the cure!
It's so very nice to meet the both of you! It really helps to have someone to talk and relate to that's going through or been through the same thing. Meeting others who have overcame the virus is really reassuring in a comforting sense and those who are going through it with you I have found it to be very supporting on both sides just being able to share and support one another. We need all of the support and motivation we can get!
I will definitely be sticking around!
Btw- did/do either of u have trouble sleeping?

Philadelphia · « **Reply #5 on:** February 15, 2016, 10:52:56 pm »

If the itching gets bad use Benadryl. It's one that works gently on the liver

Firechic19 · « **Reply #6 on:** February 15, 2016, 10:54:24 pm »

Hi FutureThinker,
Nice to meet you as well! I had the same anxiety and excitement before starting also. It was actually ridiculous how much I worked my self up almost into a state of fear by the time the meds arrived. I was expecting so much worse than what I'm experiencing. I've heard so many good things about Harvoni. I was actually supposed to do Harvoni but my insurance approved Viekira instead. I was worried at first because I had no knowledge about the vpak but apparently both are working wonders. I'll definitely be keeping up with your progress and wish u nothing but the best!
Oh and yes Hydrate! It makes a HUGE difference

I quickly learned my lesson on that. It seems to lessen the SE's.

Firechic19 · « **Reply #7 on:** February 15, 2016, 10:55:43 pm »

I didn't know if we could take anything or not, that's very good to know! Thanks Philadelphia!

AussieRosa · « **Reply #8 on:** February 16, 2016, 12:41:01 am »

Hi, FireChic.
I haven't had any trouble sleeping, but I'm taking other meds that are a little sedating which may offset that. From all I've read it is a very common side effect. I hope you have something to take to get you through if you end up having a lot of sleepless nights. Wishing you minimal side effects and a successful treatment!
Rosa

FutureThinker · « **Reply #9 on:** February 16, 2016, 12:07:34 pm »

FC19, you're already sounding better! FT

Ange · « **Reply #10 on:** April 01, 2016, 05:02:07 pm »

Hi there, I.m on day 4 of Viekerax and EXs whatever its called. I got prescribed riba but so far I haven't taken it. I had such nasty side effects from peg-interferon/riba back in 2009 I just dont want to or dare to. Turquise III study shows very minimal increase in svr with added riba so I'm taking the risk. AND OBVIOUSLY HOPE AND PRAY IT WORKS.
I am itching at night quite badly, but this time managing to stay calm so far

and doing breathing excercises, drinking water and reading. Sleep is not very deep at all and I wake up often. thankfully I was prescribed 2 strong sleeping pills per week during treatment.
I may feel less achey tho and my eyes are not so dry. Onwards and upwards. I'm delighted to be on this treatment, good luck to all.

HazelAustralia · « **Reply #11 on:** April 02, 2016, 05:44:56 am »

Hi Firechic19 & Ange,

Welcome! It's great that you've started treatment and on your way! I was also on Vieira Pak and Ribavirin - the ribavirin was decreased somewhere near the middle of the treatment. I was itchy, or had irritable skin just a few times during the treatment but I tended to think it was when I wasn't drinking enough water, or when I had been out in the sun without sunscreen. The medication makes you super sun sensitive, so even a few minutes in the sun can burn you badly. I did use sorbaline as a moisturiser and I kept it in the fridge. I also used a fancy cucumber spritzer spray - like the ones you use on planes - which was very pleasant! I didn't have any trouble at all sleeping so I have nothing to offer except I hope it improves for you both.

I haven't read Turquoise III study Ange, but my genotype was 1A, so I needed to take the ribavirin - and though it was difficult at times, the 12 weeks went quickly, the support here was great, I was able to keep working 3 days a week, it was NOTHING LIKE the interferon/ribavirin treatment I started years ago, and... Most importantly, my end of treatment results shows undetected. So here's hoping that my 24-week results are the same.

Good luck to both of you!

Aladinsane · « **Reply #12 on:** April 04, 2016, 07:30:09 am »

Hello,
My insurance company decided to approve Viekira Pak and Ribavirin instead of Harvoni. The prescription company has scheduled the delivery for Tuesday April 05, 2016 and I am scheduled to start treatment on Wednesday April 06, 2016. Getting very anxious today and reading some of your journeys is very helpful but I am dreading any side effects. What can I do to prepare for the treatment at this stage.

Rick Clark, (Aladinsane)

AussieRosa · « **Reply #13 on:** April 05, 2016, 11:34:08 pm »

Welcome, Ange. I respect your decision to leave out the Riba if you know you just can't do it. It's only a few percentage points difference and you still stand an extremely good chance of being cured. All the best for a successful treatment.
Rosa

AussieRosa · « **Reply #14 on:** April 05, 2016, 11:41:03 pm »

Quote from: Aladinsane on April 04, 2016, 07:30:09 am

Hello,
My insurance company decided to approve Viekira Pak and Ribavirin instead of Harvoni. The prescription company has scheduled the delivery for Tuesday April 05, 2016 and I am scheduled to start treatment on Wednesday April 06, 2016. Getting very anxious today and reading some of your journeys is very helpful but I am dreading any side effects. What can I do to prepare for the treatment at this stage.

Rick Clark, (Aladinsane)

Hi, Rick. Welcome to the forum. I've almost completed my 12 weeks of Viekira and Riba and have found it very tolerable apart from a stomach ache from the Riba that caused my dose to be reduced slightly. Some advice my Hep C nurse gave me was to begin all over body moisturising about a week before starting treatmment. This was to help ward off itchiness, dry skin and rash. I have kept up constant moisturising throughout and have had very little skin trouble. I've been using the cheapest moisturiser my chemist and supermarket carry: sorbolene. It's very effective and comes in a huge bottle. I still have plenty left after 3 months of use. Apart from moisturiser, I'd advise you to have something approved for stomach trouble on hand. I was told that zantac (ranitidine) and mylanta are the only ones that are ok with VPak, and I have been using them throughout most of my treatment.

Wishing you a side effect free and successful treatment.
Rosa

Ange · « **Reply #15 on:** April 06, 2016, 03:34:10 am »

Thanks Rosa for your understanding reply

. I only slept for about 3 /4 hours last night. Had very weird emotional dreams, unusual for me...... Feeling very tired and sorry for myself this am with neck-ache. Now I have work for 5 hours with refugee babies and toddlers at a creche nearby. I'm looking forward to seeing them so much. Creche has been closed over Easter. I will cope today and come home for a very early night hopefully

Have a pleasant day to all x

Philadelphia · « **Reply #16 on:** April 06, 2016, 08:24:51 am »

Hi Rick, I did 24 weeks of VP+Riba. I blogged the entire treatment- link below. Start with the earliest posts - March/April last year if you want to get an idea of how it was for me.

The top suggestions I have are:
Drink plenty of water;
Don't borrow trouble (don't anticipate problems where there might not be any); and
Use the forum here for support.

All the very best. You are doing a great thing for your ongoing health.

AussieRosa · « **Reply #17 on:** April 07, 2016, 07:04:37 am »

Hi, Ange. I hope your sleep and neck ache improve. If insomnia becomes a problem talk to your doctor about getting something to help you sleep. Being well rested is so very important to our overall sense of wellbeing.
Rosa

Hepsub · « **Reply #18 on:** April 07, 2016, 04:55:58 pm »

Quote from: Ange on April 06, 2016, 03:34:10 am

Thanks Rosa for your understanding reply . I only slept for about 3 /4 hours last night. Had very weird emotional dreams, unusual for me...... Feeling very tired and sorry for myself this am with neck-ache. Now I have work for 5 hours with refugee babies and toddlers at a creche nearby. I'm looking forward to seeing them so much. Creche has been closed over Easter. I will cope today and come home for a very early night hopefully Have a pleasant day to all x

HI ange. Sorry to hear about you adverse events. If its any consolation, I have battled with insomnia since week 4 of my treatment (currently week 10). I slept for (maybe) an hour last night, have amplified muscle aches, fatigue and general malaise. I also had a very disturbing, lurid dream about some existentially daemonic apocalypse that rendered it necessary for me be awake for a solid 5 minutes before my brain acknowledged it was imagined. HOWEVER, as of week 8, the Hep C virus is UNDETECTED in my blood and a little more suffering (as I'm sure you'd agree) is a small price to pay for the victory ahead. Regarding a sleep aid, unfortunately, the more potent, effective sleep aids are habit forming (benzos, ambien, even OTC etc) so unless you find yourself totally impervious to the acquisition of deleterious behaviors, perhaps you could try to drink 12 oz of organic tart cherry juice before any of your meals (pref the first two: studies have shown this stimulates the production of melatonin), do a systematic relaxation before bed (message me if your interested in finding out what i mean) and drink a blend of chamomile and lavender tea an hour before you retire (if at all available). These 3 have at least allowed me decent sleep on 2 out of every 3 nights over the past month. Other than that stay strong and know that there is at least one other person, on this very day, who is fighting your fight, if that means anything at all!
PZ

Aladinsane · « **Reply #19 on:** April 09, 2016, 09:10:07 am »

Greetings,
I have made it to day 5 of week 1 on Viekira Pak & Ribavirin and have not been able to sleep. Having bad headaches with neck stiffness but woke today with a bit of relief after increased water intake. Trying not worry about too many issues but feeling somewhat agitated. I just started to review some data and threads provided by the forum users (thanks Philadelphia) and look forward to getting better.
Everyone have a great day and hang in there.

Rick Clark(Aladinsane)

Philadelphia · « **Reply #20 on:** April 10, 2016, 12:12:17 am »

A few people have mentioned insomnia. There are some antihistamines which double as sleep aids such as benadryl - they might be useful. If it gets really bad, go see your GP. The time I came closest to melting down was the time I didn't have enough sleep.

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