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Post Info TOPIC: Any advice welcome here!!!
Tig


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Any advice welcome here!!!
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Lindsay,

There are a few factors involved, namely the genotype, viral load, etc., but that's fairly easy to determine nowadays. These new protocols are what they call, "Pangenotypic" or simply, they are good for just about any genotype. If a person has treated with something before and failed, then they test you for resistance to the drugs and can make a decision that way. Clearly if you're going to be resistant to a drug, they will prescribe something else.

Today, one of the primary reasons for selecting another drug is the cost of treatment. These are very expensive drugs and our battle with Big Pharm goes on. They have to get these prices down so this financial barrier is lowered. Overseas generic outlets can sell a 12 week course of Harvoni for $1500-$3000 dollars. The other drugs are similar. Now look at this and these are general prices I've looked up for the same brand name drugs for 12 weeks here in the US.

Viekira Pak: $87,000.00 with Riba about another $700.00 +/-

Harvoni: $98,500.00

Epclusa: $78,000.00

Zepatier: $57,000.00

The costs can be reduced with manufacturers coupons and copay assistance, as well as market fluctuations in price. 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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.



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64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay

Tig


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Hi Brenda,

It's not uncommon to have good days, blah days and just plain crappy days. Especially during the first few weeks. The addition of Ribavirin is often the most difficult to adjust to. It's not a "consumer friendly" medication. Isn't that an understatement!

The further you progress into treatment, the more impact the medications have on your metabolism. Ribavirin causes some anemia and it will zap your strength. This is when you need to reserve your strength for the things you HAVE to do and let other things ride, at least until this is over, and it will be over. Right? The successful termination of one unwelcome Lizard is currently underway. Everything you're feeling is that visitor roiling within you. It's not going to turn out well for that beast, I guarantee it...

Go to our nutrition section and find something yummy and healthy that will provide you with the fuel you need to keep picking up those feet. One in front of the other! We have several good smoothie recipes that have helped us all at one time or another. Sometimes drinking a good smoothie is better than anything to recharge those batteries. Helps on those days you don't feel like eating a big meal. You should also eat several smaller, healthier meals. It's important to stay hydrated and fed. Do your best!

Now get out there and drink a glass of water! Doctor's order.....

 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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....



-- Edited by bbomb on Saturday 5th of August 2017 01:58:46 PM

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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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Man-O-Pause.... Whew! I'm going to have to consider my response to that one. I have to provide a stiff (cough) platform to support my fellow Y chromosonal counterparts. I believe the worst of it begins with that "digital" exam that confirms we have passed over to the other side. Might as well be death when you hear that latex glove snap... Eeeeeeowww!  no

Here ya go, Brenda



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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

 



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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Whaaal, OK.

Meybe I did kinda fly off the handle a bit there eh? (BB, I should affirm, Tig is one of the good guys, a gal's kinda guy ya know?) But you're NOT supposed to tell them that, as it just goes straight to their heads! He just dangerously veers away from the womens-war truce-zone from time to time, I think he blamed it once on having bout of "man"-o-pause.  

Ok, fairs fair, equal time here. Tig, as kind of a back-handed (hee hee) appology ... please tell us gals all about man-o-pause. Are you sure the potato flakes thing was all riba?

Hey, I'm noticing a distinct quiet lack of male back-up here, wuz that tell ya? (Man-off buttons.) JES TEASIN' - geez! Sticks and stones. Looove, Ruth wink

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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The flowers wer a nice touch Tig :)



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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You have no idea how true that is...



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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



-- Edited by bbomb on Thursday 3rd of August 2017 12:43:25 PM

__________________

55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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You can't push my buttons! Ha, Ha!! I'll have you know, I'm 100% digital  

When can I come out of the corner? I'm thirsty and I need to go P! 

Please?  biggrin

 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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

 

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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MEN-OPAUSE ???  

Why are you singling us out? Shouldn't that be named after a famous woman or something? You know, something like  RUTH-LESS OR NAG-OPAUSE confuseconfuseconfuse 

I know, I know no  I'll go to my room and stand in the corner...



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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! smile C. 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hello Gabbiegal.....I so understand how you are feeling. I wasn't sick either before treatment and now I can actually identify with every single one of those symptoms/side effects, different ones depending on the day. Today blurred vision.....I'm sure all the crying doesn't help that :/....But I have to keep reminding myself that we have a virus/sickness in our body/liver that is present and not only is it not going away on its own for the majority of us although I have "heard" of a few rare cases who's body's were able to fight it off on their own...But the rest of us infected ones, liver will only become more damaged as time goes on... some faster/slower than others, But at any given time for no apparent reason it can sneak up and decide to raise its fire breathing head without warning. (PLEASE CORRECT ME IF I AM WRONG HERE Tig/JimmyK/wendyo & Canuck as I am a rookie here and do not want to give any wrong info here. Like JimmyK said Hep C can kill us treatment wont. Thanks JimmyK I needed to hear that!! I'm sorry your having a tuff time try to hang in there. I know that this is my run to place (as I see it is for you too) for comfort and knowledge which has been a life saver for me. I continue to learn a little something everyday from this forum.Thanks to YOU and everyone else out there. Knowledge is powerful and today for me it was stay active! Yesterday I went and hid in my room after work haha. I better try and walk or move a bit instead as Tig said to stay active so I will do just that.

Private message me anytime Girl if your feeling down

Big Hugs!!



-- Edited by bbomb on Wednesday 2nd of August 2017 04:51:01 PM



-- Edited by bbomb on Wednesday 2nd of August 2017 05:10:03 PM

__________________

55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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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



-- Edited by JimmyK on Wednesday 2nd of August 2017 12:11:19 PM

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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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It's very uncommon for someone to experience the degree of side effects you're having with Harvoni alone. Ribavirin is an antiviral medication of a totally different class, so it can't be compared to anything else. You should contact your doctor or nurse if you haven't already and ask why you're experiencing these side effects. Some people will have side effects from Harvoni, but the incidence is generally <2% of people prescribed it. Doesn't mean you're not, but you need to get some answers on why this is going on.

How much water are you consuming daily? If you aren't drinking at least one gallon, you're increasing the likelihood of side effects. In fact, I guarantee it. Start increasing your water and electrolyte intake to meet that goal. Cut out excess sugar and carbs in your diet and get some good fuel into those muscles. Even though you're fatigued, you must get up and start moving. Lack of activity will cause increased sluggishness.

Whatever you do, don't quit! That can make treatment more difficult next time. The virus can return with a vengeance and further increase the challenges of stopping it. So please, put that out of your mind. You need to check in here everyday, if that's what it takes. You need to talk with people that have been there and give us the opportunity to help. This really is the best chance you'll have to stop this virus in it's tracks. Make it a one and done experience!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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! smile 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,



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Gender-Female 62 years young

Diagnosed 10 years ago with Hep C and was found to have had Hep B at some point. Probably have had Hep C for over 30 years

Beginning stages of cirrhosis detected

SOT July 3/17 (Harvoni)

Virus Undetected Aug. 6/17

Genotype 1



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Ha! What a great read Tig....thanks!!!smile

Iv just gotta ride it out....Andale' Andale'! Riba! Riba!!!! Lol!!!



-- Edited by bbomb on Wednesday 2nd of August 2017 12:21:30 AM

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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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Brenda,

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

Riba Rage



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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So glad we are on the same page. I read those bullets and thought hmmm sounds similar to menopause! 

For you BB

 

tz.jpg



-- Edited by wendyo on Tuesday 1st of August 2017 06:23:06 AM

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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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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! 



__________________

55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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One more thing I'd like to add to Canuck's bullet list (appropriately named, lol). If you feel that your family or friends would like someplace to come and talk, we're here for them, too. Caregivers and supporters need help understanding this stuff as well. It opens their mind a little when they can read stories about the impact treatment has had on others in the same situation. Everyone is welcome here, even the people you felt like destroying an hour ago (just kidding). They don't even need an account. Guests are here all the time looking for information. It takes registration to participate however. 

Here's a little meme that describes it well....

Riba Rage.jpg



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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! smile C.

 

 

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



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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Good advice Tig. Riba affects everyone a bit different with the exception of the common factor of RAGE.

Mine was a matter of RAGE/Compulsive Purchases/and towards the end, from about week 9 forward pain and fatigue.

I have always considered myself a lousy rule of thumb with how Riba affects folks in that I failed that treatment attempt.

Brenda take the mad and crying and hand it off to who should be and that is The Dragon. Take EXTREME and utter JOY in the fact that whereas you may not feel the best right now, you are in fact MURDERING That Dragon that has for so long been comfortable taking up residence in your Liver.

Remember and hold on to the fact that you are in a huge battle and as I have always said, Slaying Dragons is tough work.

You got this.

JimmyK



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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...



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Gosh I'm having relationship problems and I don't know if its a legit ordeal or if I'm being overly sensitive from the monster pills.......I'm already too sensitive so everything upsets me. If I'm not mad I'm crying.

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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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

 



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Tig

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Okay Brenda,

Whaddaya think of this one? LOL!

boot.jpg



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



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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We can do that! I had the white capsules though. Are these the one's you're on? We'll have to work on the lizard stomping stuff next!

Riba.jpg



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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



-- Edited by bbomb on Wednesday 26th of July 2017 05:33:25 PM

__________________

55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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You are 42% into an 84 day regiment. Almost half way there so keep up the great work!

11.1 at 35 days of Ribomonster is not bad. Low yes but that will climb after EOT.

I think you are doing fantastic! wink

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

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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.

 

 

 



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I do know what your saying as my legs feel funny and heavy ....I can't even imagine how bad it was for some omgoodness....its awful to be in the store and all of a sudden your like I need out of here now! and just need to lay down. I must be a light weight... lol... but my body feels sooo heavy and swollen sometimes. I went to give my little dog a bath last Sunday and it kicked my butt....I was in bed the rest of the day. ya and to think I only take 800mg a day....but I'm also a little person. haha



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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Hi Brenda,

Since you're on a lower dose (ya, right) of Riba, 800mg, you should notice improvement fairly soon after stopping, but you need to know that it takes 6 months for it to completely clear your system. That's why they are so strict on birth control with that stuff. That didn't effect me much, go figure... no

Riba causes hemolytic anemia and before you'll start to bounce back, that anemia has to resolve. My hemoglobin dropped into the 90's and my butt was dragging. We've got people here that had it drop into the 40's and 50's. I think I remember one member had a HGB of 36. We had to take rescue drugs to maintain some level of health secondary to the anemia. It wasn't uncommon to end up in the hospital for a quick transfusion. Those were the days of Interferon and Ribavirin. Not fun. I had side effects from it for an entire year. I noticed the photo sensitivity took longest to resolve. I normally tan easily, but that year following treatment found me burning to a crisp in a matter of minutes. I learned to stay out of the sun in short order. I even had blisters on my scalp because I forgot to put on a hat and I didn't like having to remember to do all of that, so there were times I suffered as a result of my refusal to follow sensible precautions. Don't be that person!

One step at a time, slowly. Let the blood flow into each leg as you progress. You know what I'm saying? When I took things in slow motion, I could feel the muscles and lungs thanking me for taking my time. Try it, it might look funny to others, but they aren't the ones beating down a very aggressive Dragon...



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi Alison!....yes the stairs ugh no  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

 



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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Welcome from me too Brenda,

After the first 3 weeks of my treatment I absolutely dreaded each and every ribaviron pill, twice a day I had to force myself and convince myself that I could do it.   By the last three weeks I used a countdown to convince myself....'only 40 of these b*****rds left...only 39..." Silly when I look back but it was bloody hard to willingly take them knowing they were draining my energy so much that I had to crawl up the stairs at night.

I am very glad to read your posts, it's exciting to know how much better you will feel after your dragon is well and truly (and permanently) slayed.  

Your dedication to water consumption will make treatment easier and it's a good habit to keep after treatment, to keep flushing those meds out. 

Looking forward to seeing your labs when you share them.

Alison

 



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@ 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!!



__________________

55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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Hi Brenda,

I failed on interferon and Ribavarin and was not allowed to retreat until Harvoni; I am now virus free.

But...my daughter-in-law's Mom did the entire Interferon-Ribavarin thing.  She was one pissed-off tough Iowan woman for quite a while.  For example, she backed her car out of a parking space at Target and hit a pedestrian.  She then got out of her car and proceeded to scream at the pedestrian that she had just hit. That's Ribavarin in a nutshell.

 

Jo



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Joann

 

Geno 1a  - failed Tx Inc/Int/Rib - Tx Harvoni 1/14/15 - UND at EOT 4/7/15, 7/7/15, 9/9/15, 12/04/15, 10/26/16

Tig


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



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Thank You Tig!!! feelin pretty blessed/thankful right now....CHEERS! as we raise our gallon of WATER!!lolbiggrin

Is it just me or do you feel like your constantly running to the restroom lol all this WATER! 



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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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!!

ZERO.jpg



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I had my 4 week labs done on the 19th/ a week ago and I just text my nurse to ask if he could fax me the results/info on that and he said sure.....and then He text me a minute later said "btw.  just got labs and no virus! Labs look great"

I said so does this mean I still have to go the whole 12 weeks? lol He said Yes indeedy! At this point the virus in blood is gone, we need to kill the remaining virus in the liver tissue. 12 weeks for sure ...I said even the added riba?.. had to ask.....He said Absolutely. Its mandatory for what I have but He understood! ha!

YAY!!!!!



__________________

55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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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!! smile



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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Canuck....Thanks for your response, support and all this great information.  Had blood work done twice already the first month. Nurse said looks fine so I'm like, ok. But now I realize I need to ask questions and now I know more of what to ask....;) Thank you! 



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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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 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi bb,

Glad you found us and landed here. 

So sorry you had to have riba included in your regime, makes it a rougher ride, as you have already experienced and articultated well. Tig has provided very good experienced advice, not much i can add to the skin care you must do to prevent skin things from happening.

Your water intake is critical to help prevent (and dilute) sides and symptoms of many kinds. Keep yourself flooded, aim for that gal per day, it makes the therapy easier for your body to deal with.

I hear you, about the emotional volatilty, menopausal stuff and hair loss (unfair additional burdens and insults) when you already have enough on your plate. The hat and hair thing, I've been there done dat. Mine started before I even knew I had HCV (I was undiagnosed for many decades). I keep hoping (now that I am all cured up!), things like that will improve. That is what we all hope for you too, that many things will improve after you get rid of this hitch-hiking, health-sucking viral infection. When you are feeling bad times on therapy, you have to wonder sometimes if you have made the right decision, but you have - you need to and will wipe this harmful virus out of your body.

You are doing the right things, listening to your body, noticing things (like your "dryness or thirst") - DO keep carrying fluids with you whereever you go, drink lots, if your legs are heavy, adopt an activity that has some less demand but keep moving (as you say you know it is good for you, in self-defense). 5 days a week boot-camp is hard, you may need to adjust, adopt/replace some of it with less strenuous activity (just for a while). Your rest, and some "extra" rest is important too. Try to orchestrate a stress-free environment around you as best you are able. Do you have any good support at home, or good helpful friends? Try to keep eating as well as you possibly can. Try not to make too many demands of yourself while on treatment.

I noted your other post, where you were mentioning sexual transmission, here is a link that just generally shows how "infrequent" a mode of transmission of HCV is via that route, lumped in with maternal and inanimate objects. This is just one link, but there are better stats out there showing percentages of the ways folk contract HCV. One of these days the docs (all kinds) from general practitioners to gynecologists, will automatically screen all people for HCV who walk through their doors and not just what their algorithms of likelihoods and budgets and habits dictate.

http://www.epidemic.org/thefacts/hepatitisc/transmission/

When you have the time/inclination maybe you can tell us what your fibroscans or abd. ultrasounds have shown. Do your know your Fscore? I am wondering why your doc added the riba - no doubt he felt it necessary for the guarentee of the extra boost. Hang in there. Let us know what your bllod draw sheduale is, during this 12 weeks - have you had your 4 week bloods drawn yet? smile C.

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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At Tig...I appreciate your responses and advise dearly!! No one else gets it! no



-- Edited by bbomb on Monday 24th of July 2017 07:52:24 PM



-- Edited by bbomb on Monday 24th of July 2017 07:53:01 PM

__________________

55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

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