Hep C Discussion Forum

wendyo · Guru

RE: starting viekira pak and ribavirin in the next two days

Sydhanrahan · Guru

Hi Dawn,

like Alison, i have had the disease for most of my life. I went through a brief phase of intravenous drug taking in my early twenties.

i didn't know I had it until 20 years later and was in denial about it for the next 20.

I didn't ever really seriously consider interferon because I have been a single parent for ever too. I was a high school teacher and never told anybody and there was no way I could take 6 months off work with some "mystery illness".

Now my liver is very damaged and I eventually got my first three months of generic meds from India last November. I started taking sof/dak and Riba for 12 weeks. I was on a restricted fluid intake because of ascites for some weeks. Half way through RIBA I started to feel very depressed, emotionally flakey, itchy and forgetful. some research seems to show that these treatments are not as effective for decompensated livers and so I begged for a second 12 weeks. I was given approval but the doctors felt I wasn't coping well enough to continue with riba.

now I am up to 20'weeks and am having a lot of pain in my muscles and joints. I really hope that it is the result of sofosbuvir because it is hard to accept that I will be this crippled indefinitely. In the meantime, I was virus free at 12 weeks and like everybody here, am just waiting for that magic post treatment 12 week mark when a viral test will hopefully come back negative.

Many people here have finished successfully but they have made it almost a vocation to stay around and help others. It is certainly a long, fraught journey and few people who haven't been on it, can really understand that. Having others here who are so informed and can point you to the latest studies is really great. But having those cyber hands pulling you forward when you feel discouraged, frightened or just plain over it all, has been fantastic for me. I hope it works out for you too.

Syd

(ps. For privacy reasons most of us have an avatar. I must have just gone into auto pilot when I finished my entry to you with my real name. Can you just go back to calling me Syd and I'll hope not too many people read this?

Observer · Guru

Hi Dawn,

I am feeling really well now thanks.

I have been pretty sick for over 30 years, without a functioning liver, my immune system just didn't work.

I became allergic to so many things I had to give up my beloved job (23 years) of teaching art at an elementary school. I couldn't go to a restaurant in case they used soy candles or I got hidden soy, hug kids whose moms use dryer sheets, eat anything that might have even been exposed to soy, sleep on a new latex mattress or pillow because of the chemicals.

I have cirrhosis and I didn't have a choice not to do everything I could to get rid of the virus, just living with it wasn't working out. My 25 year old daughter asked me to try treatment, she said" you have been sick my whole life". (My other daughter didn't have to share her 32nd birthday with my dragon this year) aww

I am happy beyond belief to get a second chance of living and am amazed that at 58 I feel 100% better than I did at 28.

I'll be thinking about you tomorrow.... smile Drink a lot of water!!!!!

Bless,

Alison

dee71 · Veteran Member

Thank you and nice to meet you, Syd. One of the reasons why I feel terrible about being so scared to take it is because I know I am very lucky to have got it. How did you do on it? and how are you feeling now? I am relieved to hear it happens slowly I guess I have a bad habit of always expecting the worst, but you have all helped tremendously already. Hearing from people who have experience always seems to be the best medicine. I really do appreciate the information and advice It really helps me to put things in perspective. Have a great night

Dawn

(Edited for privacy reasons -- Jill)

- Edited by Cinnamon Girl on Tuesday 26th of April 2016 06:58:37 AM

Sydhanrahan · Guru

Hi Dawn,

dont freak out. Riba has a different effect on each person who uses it. Sometimes patients can take it for 24 weeks with few side effects. I do agree though that you will need to have your haemoglobin level checked regularly and the dose can then be lowered accordingly.,I was on it for 12 weeks and began on 1000mgs a day. It was lowered 8 weeks into treatment to 800.

If you do get other symptoms than fatigue, they should come over you slowly. You will have time to discuss their impact with your doctor. For the first couple of weeks side effects were minimal for me.

You're lucky treatment is available before your liver is damaged. i hope you manage to stick to the regimen and dont forget, if this one fails,there are more in the pipeline.

all the best

Lots of people here to listen and help,

Syd

(Edited for privacy reasons -- Jill)

-- Edited by Cinnamon Girl on Tuesday 26th of April 2016 06:57:16 AM

dee71 · Veteran Member

Hi mike nice to meet you as well thank you I think the dispenser is a great idea I am pretty confused on a regular lol. That is great that you were able to finish and stay on that dose. I am very happy to hear you have recovered and have more energy that must be a big relief. I will be starting tomorrow my doctor said 1200 for the riba and of course they send you home with the paper with all the possible side effects and things that can go wrong so I am back to freaking out, but it really helps to see how brave all of you have been and still did treatment after reading all those awful things and have either won the fight or have not given up and are still fighting. Jimmy I am so sorry to hear it did not work are you trying something else, I am sure with your great attitude the next time will be the one. I apologize that I am still not sure what some of the things mean yet and I have not read all the posts yet so I am probably some what behind. Have any of you taken that much riba? I guess I will see how it goes. Thanks again talk to you soon

Dawn

wmlj1960 · Moderator

Hi Dawn and welcome from me as well.
As you can see you won't feel alone nor be un-informed around here. It's a we thing here and we all have a successful SVR for everyone as our common goal. You've recieved lots of helpful information already and I can't add much other than to again stress the importance of adequate hydration and compliance with your medicine schedule. In case you don't already have a pill despenser, I do suggest getting one. Ribavirin can cause some confusion and you don't want to get confused about whether or not you took your medicine as scheduled.
V-Pak / Riba is a very effective Tx regimen and the Riba Sx's can be dealt with. My hemoglobin got down to 7.9 during the end of my 24 week Tx and I chose to stay on the full dose, after which I have recovered extremely well and have more energy than I've had in many years. You'll only be doing 12 weeks and should do just fine.
So go pick up those meds and join us on our journey to a Hep C free future. Make yourself at home and keep us up to date on what's going on with you. We're glad you're here.

JimmyK · Guru

Dawn we are very happy to have you here.

None of us can take the place of your Doctor of course. He has access to all your medical files and profiles not to mention he is licensed.

Experience here can help to develop sound questions to ask the answers for which should also help to ease the stress of treatment unknowns.

This is a battle well worth the fight and the results have been incredible with the many new treatments. Pay no attention to the fact I failed the same treatment as I am quite an odd ball. LOL

What is important is they simply steered me in a different direction yet towards the same goal.

One day you will be helping someone else here. This is how it works. wink

JimmyK

dee71 · Veteran Member

Nice to meet you Tig ,Firechic and Alison Thank you so much I am so glad I found this place and I am happy to become part of your family. I feel a lot better being able to talk to all of you who are going through the same fight it really helps. I have read some of the older posts and you are all incredible and strong people for all that you have done and been through, and you are kind enough to take the time to help others .I am so grateful for all the advise and support. I am glad to hear you are doing great Dave and I will be sure to check that out and to firechic you must be excited that yours is almost over I hope you are feeling well. Alison How are you doing now after treatment that must have been really hard to tough that out and really scary. to tig how are you doing now and how did your treatment go? I want to thank you all again and I am going to get ready to go pick up the medicine and all of your replies have helped me so much and I will check back later Have a great day

Dawn

Tig · Admin

Hi Dawn,

Welcome! You have received some very good information and I know it will benefit you along your journey. We have several people that have traveled your road and can relate to your situation intimately. Don't hesitate to ask questions and lean on us for support if you desire.

We're a diverse group from every corner of the planet, so there is usually someone close by all times of the day. We share as much or as little as we feel like giving and provide help in a non judgemental fashion. We are all together in this and will remain friends long after your treatment is successful. You'll hear the term "family" used a lot and it describes our relationship well. We're a close group and I'm glad you're a part of it! Get to know everyone, I think you'll fit right in and will find the support very helpful. Good luck!

Firechic19 · Veteran Member

Hi Dawn! Welcome from me as well! I'm also on viekira and riba, I have 4 days left and my 12wks are over. I understand the fear of riba rage while having kids. I have a 6 month old, and the rage did affect me but not once did I get aggravated with my baby. She's actually kept me sane during the whole treatment. I honestly think it helps to have kids because they demand your attention and you're focused on them more than trying to pay attention to the side effects of the meds. Don't get me wrong I still have episodes of rage such as when a stupid jar won't open, or my computer starts being an idiot while I'm doing homework, and traffic jams lol You get used to it though and it's easy to control because you'll learn what sets it off and avoid the triggers. There has been times that I've seen it starting to happen and just started laughing because I'll realize how stupid the situation is lol I think I've laughed more on treatment than I did before. Most of the time a deep breath or just leaving the room will completely shut it down. So no worries..Your kids are fine. Drinking water is extremely important!! I can't stress that enough to you. The meds literally suck the water out of u which in turn makes the side effects stronger, so hydrate constantly! Water truly makes u feel better and dilutes the sides. Some ppl don't even experience side effects, so u may not even get any. It's different with every person. You've got this! Trust me!!! The ppl here are extremely supporting and helpful in every way, they'll walk u through every step of the treatment and beyond, along with myself. You've definitely came to the right place! smile

After caring for 5 kids I'm confident you're gonna show the meds and virus who's boss!

Observer · Guru

Welcome Dawn,

I did the Canadian equivalent of the V pak and riba for 12 weeks last Sept-Dec.

Like you, I was nervous about taking it but I have to say, it was do-able and it was worth it.

Water is vital, and following the exact protocol is important. HCV is a clever little mutator so you need to never give it the opportunity to mutate.

Eat before your pills and take them at exactly the same time twice a day. Set your phone alarm to remind you 10 minutes ahead so you can eat a banana or yogurt or whatever you want. On my phone you can name the alarm.....I called it 'Eat, Pill, Heal'

The riba rage happened slowly to me, I found myself getting a bit short tempered, but the people in my life understood it wasn't me and the odd slammed door, broken plate or shocked phone sales life interruptor don't really matter.

the last month was the hardest, the Dr.s offered me a lower does of ribavirin when my hemoglobin dropped to 8, but I chose to tough it out.

Bless (you'll do great) smile

Alison

Linuxter · Guru

Check out our Hep C and Nutrition forum and make a visit to the Green Smoothie Ranch ... I'm the ranch hand over in those parts.

Lots of great green and other colored smoothies over there.

Lounge around and make yourself at home here, we're all just a big family here and now you're part of it. smile

Dave

p.s. I'm doing great, it's only been just over a week since the End of Treatment and things are slowly getting back to routine and normal with the occasional reminder that the Riba has not quite left the room yet. (takes a little while but it subsides fairly quickly).

-- Edited by Linuxter on Monday 25th of April 2016 02:17:58 AM

dee71 · Veteran Member

Thank you again I am definitely going to talk to him about it tomorrow and make sure he checks it often. The green smoothie is a great idea and I am going to stock up on water, where I live the water tastes and smells like bleach bleh I will definitely appreciate the help with interpreting the test results that would be great. I am glad your hemoglobin did not become a problem for you. How did your treatment go and how are you feeling now? Thank you for the information and encouragement I think at least I wont have a breakdown when I pick up the medicine. Have a great rest of the night

Dawn

Linuxter · Guru

Hi again Dawn,

Just be sure to tell your Doctor that you are concerned about the Ribavirin with anemia already a problem.

Ribavirin does lower the Red Blood Cell count and thus the level of hemoglobin in your blood over time. You should, at the very least, insist on close monitoring, often and talk to him/her about a backup plan for when your hemoglobin does drop.

I was at the low end of the range for hemoglobin prior to treatment and was also taking an iron suppliment. I was told to stop taking the supplement, that it could cause problems with the ferritin level while taking the Ribavirin.

Fortunately, my hemoglobin didn't drop too far (I think at the End Of Treatment (EOT) it was 12.9 which is just barely below range so it wasn't a problem. I did, however have them do a CBC periodically during Treatment (Tx).

I went on a Green Smoothie binge (lots of kale, parsley and spinach) and consulted my doctor who encouraged me to continue and assured me that the levels of iron that I received from nutrition would not be a problem. (I would suggest talking to your doctor before any major changes in diet or especially any changes in any medication, prescribed or over the counter).

I think the greens made a difference, along with proper hydration (3-4 liters of water per day), but I have no proof or data to back up the greens consumption. I do think proper nutrition is very important, especially when taking medications such as these. It certainly will not hurt and gives your body the strength and tools to help in the fight against the virus.

Close monitoring of the anemia is key, I think so do what you can to insist on that, a CBC is inexpensive, there's no reason to NOT have that testing done as often as needed to ensure that your hemoglobin does not drop too low. Your primary care physician or gp should also be able to order the CBC testing so, if you need to, use both your specialist and your gp.

Educate yourself (you probably already know the signs) about what to watch for regarding the anemia, we can help with the interpretation of any test results, most of us here have been through or are going through the whole process so we're familiar with what they mean.

As far as how you got HCV ... it's not important, what is important is getting you on the road to being cured and on to SVR. You'll do fine, and as we've all mentioned, we will be here to help along the way, all the way. smile

By learning about the virus and treatment, as you will here, you empower yourself to be able to discuss your concerns with your doctor(s).

It's overwhelming to us all, learning that we have HCV and going on treatment but it's all good.

You have a lot going for you, your liver sounds in great shape, you've already jumped through a bunch of hoops to get approved for treatment, you found this place ... you'll do great!

Be Well,

Dave

-- Edited by Linuxter on Monday 25th of April 2016 01:07:27 AM

dee71 · Veteran Member

Thank you so much for the support and kind words. I am very happy to meet you Dave, Jill and Jimmy. I just tried to post a reply but I do not think worked. Thank you for the link I will try to figure it out. I see a gastroenterologist he is the one who helped me get viekira pak and ribavirin. My insurance kept denying it because my fibrosis score is only 1. I am genotype 1a and I am not sure what my viral load is I am going to ask him again tomorrow. I think I am doing twelve weeks and I do not know what dose of ribavirin yet because they told me they will go over and explain everything when I pick up the medicine tomorrow. I am also worried about anemia because there have been times when I haven't taken my iron pills and ended up out of breath and barely able to get out of bed because it dropped so low. I have told my doc but he said they will watch it closely. I have no idea how I got this or when but I was diagnosed 7 years ago. I have only told my family about my diagnosis and they are supportive but are not home much anymore so I am really happy I found you all because I am probably am going to be spending a lot of time alone but that might be ok if I get riba rage lol. After reading your posts I already feel better I really appreciate being welcomed and would love to hear about your experiences. This is the first time I have ever really talked about it. Thank you so much you are all awesome biggrin Looking forward to hearing from you

Dawn

Linuxter · Guru

Hi Dawn,

Welcome to the Forum, We're glad you're here!

If you want to share a little more information about your Diagnosis (Dx) and upcoming Treatment (Tx) it will help others help you ... the following is a link to show how to put some information in your signature and at the link there is also a link to abbreviations use on the site.

How To Create Your Signature / Forum Abbreviation Definitions

Just be sure to drink LOTs of Water (3-4 liters per day) and eat well and you'll be fine, but do discuss your concerns with your doctor.

We'll be right here for support along the way. We've all had fears of what's ahead ... it's a natural reaction ... but it's all good and you'll be fine smile

Slaying a Dragon takes the right weapon ... VKpac/Riba is a great one and very effective ... you can do this ...

Dave

Cinnamon Girl · Guru

Hello Dee, welcome to the forum, I`m glad you found us... smile

First of all, try to stay calm, the side effects from this combo, including ribavarin, vary from person to person, and you`ll most likely find your treatment a lot easier than you`re expecting it to be. If you do find that it`s getting difficult to cope then I`m sure your doctor will be able to prescribe something to help with any riba rage.

I suppose you`ve discussed all your concerns with your doctor, but if not you really should do.

Also, do you have any support at home, family or friends who would be able to help out?

A few more details would be very helpful for us, as Jimmy said. I`m presuming you have Gen 1 as you`ll be doing Vik Pak.

You`ve found a very friendly and supportive group here, and we`ll do all we can to help. Try not to be scared.. we`re here for you. smile

JimmyK · Guru

Greetings Dee.

My biggest concern is a history of Anemia and then taking Ribovirin. Is your Doctor a specialist or a GP? Are you insured? How many weeks treatment? Do you know the dose of Ribovirin you will be on?

What is your Fibrosis score, GenoType and Viral load?

Your kids will not be in any danger but the anemia is concerning enough to wonder if you have any other options.

I do not intend to alarm you, I have a feeling you got that covered? But we will want to make sure all the right questions have been covered.

Warm regards and welcome!

JimmyK

dee71 · Veteran Member

I am going to pick up my medicine, viekira pak and ribavirin tomorrow and I am scared to death to start it. I already have severe anxiety and panic attacks and rage issues and I have been anemic for 7 years. My doctor does not want me taking anything with the treatment including my iron pills for the anemia. I am really scared of the riba rage I have 5 kids that fortunately are older, teens and twenty's but I still have to drive some of them to school or work and even though their older still come with a lot of drama.I really do not want to flip out or anything lol. I was also curious how difficult it will be to work.This whole week I have had a lot of panic attacks and heart palpations probably because I am so worried about starting treatment. I know I am really lucky to be able to get treatment but I am still freaking out. Any advise would be greatly appreciated.ited

Edited to reduce empty space -- Jill

-- Edited by Cinnamon Girl on Sunday 24th of April 2016 03:41:21 PM

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