Hep C Discussion Forum

Can someone please explain the necessity of the Viekira Pak and Ribavirin over another medication?  My doctor recommended Epclusa because I tested resistant to both Harvoni and Zepatier.  My insurance company denied both the Zepatier (before denial) and the Epclusa but said they would pay for Viekira and Ribi.  My doctor's office said it was likely all about money, but just wondering why they would suggest that treatment.  Naturally, the insurance company would give me no explanation and said that information could only be discussed with my provider.  I'm still waiting on a response from my first appeal but really don't want to do the Viekira and Ribi if I don't have to.  Thanks.

Its so weird....i cant feel just fine and then all of a sudden i feel like poo .....you just never know how your day will go....

HAHA!!! Where's that "LIKE" button??!!! ROTFL

The flowers wer a nice touch Tig :)

haha!!!! You guys crack me up!!

I always thot menopause meant it was time to put men on pause ??? Lol

( Like a time out)

-- Edited by bbomb on Wednesday 2nd of August 2017 10:33:33 PM

-- Edited by bbomb on Wednesday 2nd of August 2017 10:35:03 PM

We didn't single any of you "men" out Tig! - we just left you out! - there's a big dif!

Hey, somebody push Tig's man-off button.

You said it Tig! - it's to the corner for you - and take those dogs with ya too - and when you come out, we'll just be all nice and stop with all this name callin' - right?

https://www.youtube.com/watch?v=_y_z5HM9vY8

Hi bb and Gabbie gal,

Wendy brought up a very good point. She noted many of those not-very-nice-to-experience (at all) things, were also on her regular menopause-to-do list!! hee hee. Me too! (why I am laughing? - no idea! - it's NOT funny!) WHO KNEW (if we're talking just in general terms about big "life changes" here, that it could be all about surging and waning estrogens, progesterones or riba or other HCV treatments!! What ever the reasons are for feeling how we feel, I wish they would just vapourize!

BB, I left the "euphoria" symptom deliberately off that list as I did not want to scare you, but I think you already know what that is all about anyway, between the highs of rages and lows of the crying jags, the euphoria just kicks in, right about anywhere/anytime in the midest of either, just to thoroughly mess with your head and keep everything just weirdly off-kilter!

One alone (of a lot of those items on that list), would be hard enough to experience! I found the weirdest (maybe not the hardest) one was -

• feeling of constant movement of self or surroundings (some control would feel nice)

(try coupling that one with feeling "detached" all at the same time! - definitely feels weird - good those times were fleeting!) 

Jags too had a curious unpleasant mix of symptoms/feelings, a lot prior to, and entering into treatment, we all were discussing HCV, menopause (hepopause she called it) and drugs there too. Just being subjected to the stress of having HCV, going through treatment, is quite an ordeal, the stress of everything only compounds any negatives in how we feel while getting through treatment.

But me and Gabbie and Jags are/were not on riba - riba IS a WHOLE different unique ball of wax. Riba adds it own special elements.

You are doing really well BB, riding that riba bronco!, half the battle is trying to anticipate its twists and turns. 

I felt an over-riding deep inner secret-pride, in performing what I had to do, to get cured - that did help me, throughout treatment, when I had my lows.

You are right BB, move about, drink, do anything/everything you figure will help even one iota, even if it only helps for a minute or two, whatever you have to do, it is ALL good forward motion to get where you need to be.

I am so glad when people find this place to come to, I found it helped me get through things, a lot!  C. 

Greetings,

During treatment, and while experiencing any sort of side affects, it is not uncommon for folks to reflect on having felt fine before treatment. That has led some to stop treatment but it is a horrible trap to fall into.

To me it is not so much how one feels. The fact is HEP C can kill you, treatment won't.

End stage liver failure will feel far worse than treatment side affects but by that time there may be little to nothing you can do about it.

Voluntarily ceasing treatment can affect eligibility for future treatment.

Hang in there it is absolutely worth the fight.

JimmyK

Canuck wrote:

---

Hi bb,

Some "bullets" about riba-rage:

Here is a list of some ordinary things, signs and symptoms, of what being on riba "might" cause, when people have no choice but to have to do riba as part of their treatment. Riba can have many side effects, some people experience some of these things, some experience less. Not everyone will experience all of these, but many people do experience bouts of what we "fondly" (not!) call riba-rage (and it is not fun or funny). It is not the patients fault nor doing, for any chaos or upheavals being caused, to themselves or those near to you - it is the riba! I have not even listed the main Pharmacological things that can occur when on riba, such as skin issues, and blood dyscrasia's (anemia's and such)!

When family members see you experiencing (any of these things) from time to time, and, they do not understand what riba-rage is, try showing them a list like this and letting them read the "insert" that comes supplied with your riba - it may help them understand better what you might be going through, which can be quite a lot! They may have no real idea what you are truly experiencing. And if they did, they may be more considerate and helpful and understanding of you, all of which can only help.

When there are negative interactions in the home, it is because riba is in the room! It helps (a bit), when everyone understands that - then we can all make allowances for it, and develop tactics to help everyone cope (as easily as we possibly can) with getting through the riba treatment. Trying to avoid negative interactions, being supportive (no matter what), allowing distance and room when necessary, and deciding if you should seek medical advice and remedies when any psychological torment becomes just too great, help. Freinds, family, and those around us have added responsibilty in helping, through periods like these.

 

• anxiety
• being forgetful (oh, did I mention ... being forgetful, and or having anxiety?)
• blurred vision
• body aches or pain
• change in taste or bad, unusual, or unpleasant (after) taste
• crying
• depersonalization (in self-defense I think, just temporary!)
• difficulty with moving
• discouragement (yup, it's hard alright)
• dizziness or lightheadedness  (thanks)
• dysphoria - definition - a state of unease or generalized dissatisfaction with life (ya, well!).
• feeling of constant movement of self or surroundings (some control would feel nice)
• feeling sad or empty (did I mention crying jags)
• general feeling of discomfort or illness
• hyperventilation
• irritability (often justifiable I might add)
• joint pain
• lack of appetite
• lack or loss of strength (show them the set of stairs test)
• loss of interest or pleasure
• mental depression (uh, did I mention crying?)
• muscle aches and pains
• nausea
• nervousness
• paranoia (this is really not helpful)
• poor concentration (what?)
• quick to react or overreact emotionally (they should avoid your "on" buttons)
• rapidly changing moods (we already knew this!)
• restlessness
• sleeplessness
• troubled breathing with exertion (sigh)
• unusual tiredness or weakness (double sigh)

Try posting this on your fridge for your people to see and read, let them read your actual riba "insert" for themselves, maybe they will be more understanding of you, and what you are going through, in your temporary plight. Try to walk away if you lash out at others. Remind yourself, and them, that riba WILL end, and that getting through this period to the end goal is what is paramount right now.

Hang in there!  C.

 

 

(some bullets borrowed from L. Porter and from other blogs/sites)

---

 This Riba--I don't know what that is. As you know I'm taking Harvoni and I went down the list and I have ALL those side effects. So much so that as I began my 2nd bottle a few days ago I was certain I cannot/could not finish this ordeal. I'm still on the fence about it!!!! That's why I rarely post any longer. I'm either too fatigued to type or I can't see through my teary eyes. I know I should feel blessed for this opportunity to get healed and I do count my blessings, it's just that I'm so angry to be in this position. Why me??? AND I did not expect to feel like walking death during the cure when I felt FINE beforehand,

Brenda,

Did you see this story in the post I left earlier? I had you in mind when I left it!

Riba Rage

omgosh yes! yes and YES!!!!Thanks Guys!!!....That's what I was trying to do ...walk away or in my case not respond but I eventually had to address it and try and share (that fire inside) and how I wasn't sure If what I was feeling was a riba fueled thought gone wrong....ha!  And that its not a good idea for me to address the issue at this time or make any major decisions in fear of over reacting and making a mistake. Helllooo!!!... I'm thinking to myself why am i mad? I wasn't mad before and should I be this mad? of course NOT!!  and knowing Men are on another planet anyway haha So I knew I had to be careful ....but guess what?! The RIBABOMB went off instead of acting like the sweet and sane gf he had last seen I gave him a taste of where my head was currently at and holy moly I had even just come out of church and was trying to pray about it first before responding but yep I lost control, tossed a granade and Riba pulled the pin. So not like me and not the person I ever want to be....omgosh the madder I get the more upset i am for getting and being so mad and upset. wth????

I could just be trying to walk into the garage to get into my car and my purse gets caught on the side view mirror and my body bumps and bounces around from here to there feeling fat boated and slaushy from all this water!! and then my head into Lord only knows what...and wonder where the hell I was even going, I usually start laughing at myself but now I find myself cussing at some invisible force like its out to get me! and I'm sure the neighbors could hear...Geeeezus!!!... Lord have Mercy!!!

You know whats worse than Riba Rage? (I know what your thinking, There isn't!) Is a full blown menopausal woman on Ribavirin Can we say time for lockdown or assisted living? 

Oh No it gets better! My boss decides to call me today and tell me off for no legit reason and I thought to myself this is not happening I must be in the twilight zone....

All I can think of is run.....run to your friends at the discussion forum they will save you and you always do!! There is a God in heaven! 

Hi bb,

Some "bullets" about riba-rage:

Here is a list of some ordinary things, signs and symptoms, of what being on riba "might" cause, when people have no choice but to have to do riba as part of their treatment. Riba can have many side effects, some people experience some of these things, some experience less. Not everyone will experience all of these, but many people do experience bouts of what we "fondly" (not!) call riba-rage (and it is not fun or funny). It is not the patients fault nor doing, for any chaos or upheavals being caused, to themselves or those near to you - it is the riba! I have not even listed the main Pharmacological things that can occur when on riba, such as skin issues, and blood dyscrasia's (anemia's and such)!

When family members see you experiencing (any of these things) from time to time, and, they do not understand what riba-rage is, try showing them a list like this and letting them read the "insert" that comes supplied with your riba - it may help them understand better what you might be going through, which can be quite a lot! They may have no real idea what you are truly experiencing. And if they did, they may be more considerate and helpful and understanding of you, all of which can only help.

When there are negative interactions in the home, it is because riba is in the room! It helps (a bit), when everyone understands that - then we can all make allowances for it, and develop tactics to help everyone cope (as easily as we possibly can) with getting through the riba treatment. Trying to avoid negative interactions, being supportive (no matter what), allowing distance and room when necessary, and deciding if you should seek medical advice and remedies when any psychological torment becomes just too great, help. Freinds, family, and those around us have added responsibilty in helping, through periods like these.

• anxiety
• being forgetful (oh, did I mention ... being forgetful, and or having anxiety?)
• blurred vision
• body aches or pain
• change in taste or bad, unusual, or unpleasant (after) taste
• crying
• depersonalization (in self-defense I think, just temporary!)
• difficulty with moving
• discouragement (yup, it's hard alright)
• dizziness or lightheadedness  (thanks)
• dysphoria - definition - a state of unease or generalized dissatisfaction with life (ya, well!).
• feeling of constant movement of self or surroundings (some control would feel nice)
• feeling sad or empty (did I mention crying jags)
• general feeling of discomfort or illness
• hyperventilation
• irritability (often justifiable I might add)
• joint pain
• lack of appetite
• lack or loss of strength (show them the set of stairs test)
• loss of interest or pleasure
• mental depression (uh, did I mention crying?)
• muscle aches and pains
• nausea
• nervousness
• paranoia (this is really not helpful)
• poor concentration (what?)
• quick to react or overreact emotionally (they should avoid your "on" buttons)
• rapidly changing moods (we already knew this!)
• restlessness
• sleeplessness
• troubled breathing with exertion (sigh)
• unusual tiredness or weakness (double sigh)

Try posting this on your fridge for your people to see and read, let them read your actual riba "insert" for themselves, maybe they will be more understanding of you, and what you are going through, in your temporary plight. Try to walk away if you lash out at others. Remind yourself, and them, that riba WILL end, and that getting through this period to the end goal is what is paramount right now.

Hang in there!  C.

(some bullets borrowed from L. Porter and from other blogs/sites)

Hi Brenda,

Sorry about the relationship issues right now. If they just began, especially after starting the Ribavirin, you absolutely need to consider it as a contributing factor, if not responsible. Riba removes many of the previous barriers to confrontation that we normally have. It takes your emotions, rubs them raw and then pours salt on them. I kid you not! If there were previous disagreements going on, even a minor one, they can suddenly turn into world war 3.

If you haven't sat down and explained what is going on right now, it's time to do so. It's such a difficult time to try and resolve something. Treatment can really take it out of you anyway. When you add 800mgs of Riba hell to the mix, you end up walking around with a 2 second fuse. Tell your significant other about the emotional strain this has placed you under. If you can get their understanding and emotional support, you'll do far better. They will do much better emotionally if they are part of the solution.

Now, I will tell you this, it does require you knowing when to walk away from the flame that lights your short fuse! You know the drugs can cause these emotional problems and anger, but they don't give you permission to take it out on the unsuspecting! Remember what I said, if you feel the emotion boiling over, walk away. I know it's easier said than done, but you're aware this is a possibility, so you have to be the one that tries to avoid the confrontation. I got so mad at a box of instant mashed potato flakes (long story), I knocked the crap out of it because it kept falling out of the cabinet. I wish I had walked away. It has been over 3 years ago and I can still find them in the nooks and crannies of our pantry! That was a bad day....

Stay strong and give yourself a good talking to! Tell yourself that you're okay, but these drugs are in control of your emotions. Allow your sensible side to talk to your emotional side and remind it who's in charge. It won't last forever, but if you don't show your Dragon the door, it will. Now is the time to double down and ensure success! You WILL do it...

Forgive us, but we enjoy doing this sort of thing. Wait til Jimmy makes you a T Shirt!

that's them!!....  lil blood suckers! lol

Thank you JimmyK.......Maybe its time for me to find a new profile pic.....something more optimistic lol like a combat boot stomping on those little blue ribomonster pills haha

11.1 could be accurate, it depends on how it's listed by your lab. The labs in the US and Canada are as follows and they can interchange. Here are two ways they are listed, either grams/Liter or grams/deciliter. If yours is 11.1, then it's low and explains your fatigue. It can drop lower and they used to reduce the Ribavirin when we started getting close to 100 (10.0). I didn't reduce and most people I knew didn't want to, because it was always thought that staying on as high a dose as possible was the way to go, thus the need for rescue drugs to combat the anemia. Your doctor will keep a close eye on that for you. Be sure to let them know if you're having too much difficulty with it though.

Tig mine says 11.5...that can't be right maybe i'm reading the wrong Hemoglobin numbers....

Hi Alison!....yes the stairs ugh   I get so upset every time I attempt them as my bedroom is upstairs at home and then have to catch my breath afterwards lol wth?!? How long after you were done taking those toxic little suckers did you feel back to normal again? I just can't help thinking every time I attempt the journey up those stairs to infinity how I normally could skip every other stair before....haha

@ dharmabum........

       HA!! OMGosh!.... Riba rage at its finest I see! I have already bit off a few heads here at work last week and I feel bad for it, but being aware of its source sure makes a difference. At lease I know what to do now like Tig said...."WALK AWAY"!! and then I'll... just keep swimming, swimming, swimming....

all this water.. lol

Congrats on being virus freeeeeeeee!!!!! high five friend!!

That's a good sign of proper hydration. Keep it flowing!   Ahh....the relief!

WOOHOO!! That's great news! I'm so happy for you and what a testament to these new treatments. You've got that Dragon by the tail and it has nowhere to land but in the moat. I know it would be nice to say goodbye Riba, but you're well on your way to the cure and you don't want to stop what's working. I hated every day of 28 weeks at 1200mg day, but I would gladly do it again to know I don't have this beast lurking around my liver and swimming through my plumbing at will. 

Congratulations Brenda! Share those labs with us when you get them. I'm going to go out on a limb and tell you they will be perfect as well. You got this girlfriend!!

Hello Wendy...... Yes! the texture is so different, so weird! kinda sucky texture dry and frizzely lol and I had super thick hair too. This whole hair thing was already an issue before I started the treatment  (for like the last few years) and seemed to come and go sorta speak and started to finally stop and get a bit better but now here we go again!.....poo I say!!! lol 

Thanks for sharing!! 

Just to share my hair experience while on interferon and riba; my hair thinned a lot. I had very thick hair so this to me was noticeable to me. The texture of my hair changed as well. BUT after it was all out of my system, the texture went back to what I was accustomed to. 

Brenda - I also work out 5 times a week. During treatment if I had to drop to 3 or 4 times a week I did. I listened to my body and did what I could. I get it though, it helps the mental as much as the physical. Take care of U!

wendy