Riba Rage

I think I had my first attack of riba rage today. There has been a lot of tension in me the past few days, but today I found out we can no longer use the pharmacy that charges no copay, our insurance has decided which pharmacies they will reimburse. Instead of calmly looking at what might be our best alternative, I FREAKED out. I said:

1.it's not worth it. I am going to quit the meds.
2. My husband needs to quit his job and get one with better benefits.
3.  I am going to quit ALL medications.
4. I will call the insurance company and tell them if something happens to me it is THEIR fault. (this included telling my husband to sue them after I die)
5. I am not worth this. My husband has enough to worry about without useless expensive me.

Now, this seems mildly humorous now, but at the time seemd like the end of the world. I was LIVID. This is scary for me guys, if I cannot control myself when there is a problem, how can I stay on the meds?

Help?

[Indiana]

"Mildly" humorous??  Hahahahaha  Sorry, but that is "classic" Riba Rage you've got there. It DOES get better.
Problems are something we don;t deal with well while on the meds. We just have a hard time with ANYTHING that rocks the boat. Hopefully you said all this to your husband (poor guy) and not out in public.....but if so, no matter. You are on some serious meds here. These things WILL happen. Since you DO have a husband, you need to let him deal with all this stuff. He;s a big boy, He can handle it. As long as you get your med supplies the rest doesn't matter. At least you're not throwin and breakin stuff yet. I had to replace a BUNCH of stuff after I finished tx. Your reaction is kinda normal for tx.
Keep your eye on "The Prize". Stopping for $ reasons is NOT an option. Find a way. YOU are NOT thinking straight right now. It's the meds!!! NOT YOU. Let your husband help you.  Or at least SOMEONE. It is NOT a good idea to try to work this out on your own when you are not able to deal with it.
BUT, If you must, SCREW IT! There are all kinds of BUTTHEADS out there. Just resign yourself to become one of them.....occasionally. SO WHAT?? SOME people are like that all the time and they go through a whole lifetime without any major problems. The worst that happens to them is that "other" people say...."what a Butthead". SO WHAT? Those folks don't know what these meds do to us. And who really cares what "Those People" think anyways?
Luagh at the outbursts. It can be BIG fun. Warn your family that this could happen and then just go with it. You can't stop it when it starts. You will know that it's happening but you can't stop it. Just deal with the fallout when its over.
Now that you've started tx stopping is NOT an option....not for something "social" like being an occasional butthead. Just put that embarassment aside and keep going forward. Nobody will remember anything you did after you're done....except to laugh about it once you've cleared. Everyone where I work had to deal with my "episodes" on tx and now they ALL say that they kinda miss that "weirdo". They ALL thought it was fun. Only (I) thought it was a problem. They all knew I was on meds.
So, Throw a phone, kick a cat, cuss out your Mother-in-Law, ***** about the produce, shoot the tv with rubber tipped darts, shoot you HUSBAND with rubber tipped darts. The ones who REALLY matter in your life won't care. They will ALL be glad that you are doing ALL you can to heal yourself. They care about YOU....NOT the silly stuff the meds make you do.
Take care sweetie.
You are NOT alome................

[Fubarcat]

Insurance companies must be in the mode to raise their ugly heads right now!  I just received an Explanation of Benefits from Blue Cross/Blue Shield denying payment for my first round of meds and wanting "back up documentation to support why they should cover the meds".  Oh, I don't know.  I'm taking these meds because I have nothing better to do, because I like to sleep 15 hours a day, because I like to worry about whether I'm going to lose my job, because I like to worry about whether it's going to work or make me worse, because I like to worry if my husband/son will be able to handle me for the next year etc., etc., etc.  IDIOTS!!!  Try to deal with your insurance company.  It will be frustrating but I have learned if you pitch a big enough fit, they will usually come through.  Threaten to sue them (I work for lawyers - that's my standard response to insurance companies!) and I bet they will come around!  Hang in there kiddo, look at the big picture, and know you will be getting better somehow, some way!

[berlynn]

audrey, I hon, I'm sorry that you are feeling soooo overwhelmed, and boy do I understand those feelings. These meds don't just mess with our body...they also mess with our minds. DO NOT EVEN THINK ABOUT QITTING THE MEDS!!! I know that it makes it harder to now have to deal with the money and insurance aspect of this....but if you can work it out....it will be worth it in the long run to kick this dragon's butt.
audrey, I have only been able to check on the forum occasionally lately cause much has been happening...so I don't know alot about your situation....what meds are you on?/What geno type do you have?  Do you have a supportive doc? I also don't know if you are one of us with kids or grandkids......but I will tell you from my own experience......I believe that it is important for me to get rid of this awful disease....and I will do it, no matter what it takes.  I have children and grandchildren who..of course ..I love dearly...and it is immensly important for me to make sure that I don't pass this disease down to them by somehow infecting them. If I caused one of my loved ones to go through what I am going through now...I would never be able to forgive myself.
So you see why it is important to stick with this.....and do what ever you have to...to hang in there. There are other drug companies out there who may be able to work with your Ins co. I have a friend who would have had to pay $1000.00 out of pocket to cover her co-pay. She is a single mom..and this would have been devastating for her...I came on this forum and started to ask for advice...to help her and was given websites and numbers of drug companies to check into. Southernboy even emailed my friend and shared the wealth of info he has to help her out. Now she is approved by her ins co to go through a drug co that will accept what the ins pays as full payment.....no copay.
Sorry about the long story honey...but there are many people here with info that may be able to help you. Hang in there and figure out what you can do to stay on the meds.
As far as feeling expensive and worthless...believe me...I am the QUEEN of those awful feelings...if I am not careful.....those feelings can bury me.......but I listen to my friends on this forum...who care and give me the support to help me through this....Listen to Indiana....he is my KNIGHT IN SHINING ARMOUR......He has talked me through and made me laugh through many heartbreaking moments. Just remember that there are people here that really do care about you and supporting you through this difficult time.....we know first hand some of the things that you are going through..:) We will lend you any expertise we have to help you get through this. Just ask questions and hopefully those here who have info that might help you will lend a hand. Hang in there honey...we will be there for you. Take care, berlynn

PS.YOU ARE WORTH IT!!!!!!!!!

[natbil]

I have recently few of this "episodes", I didn

[honey1616]

Audrey,,,,Hang in there lady as we are all supporting you and YES stay on meds!!  I know that riba rage feeling too well.  I just want to start screaming and my blood pressure feels like its maxed out and I have to say to myself...Sit down and take a good deep breath and honestly that does help make me realize that I'm overreacting just a tad,,,haha   One Day at a Time..Count Down minute by minute...Take Care and you are in my prayers!

[audreywald]

Thank you so much. My husband said I shoud do a Scarlett O Hara, think about it tomorrow, when I can do something about it.

Actually, my copay cannot be more than $60 per month per med. It is just that I bring in nothing so an additional couple hundred a month (large dose of zoloft, pain meds, breathing meds, stomach meds) add up. And I need them all!

I am a granma and a mom. I have custody of my 11 year old grandson, who is the light of my life, who also has some real emotional problems, maybe is bipolar, for sure has bad depression. I never want to take it out on him and last nite I got very upset when he would not eat what I made for him. I yelled but told him while I was yelling that I was not mad at him, I was just mad.

Also, my daughter is preganant and expecting any minute, and I feel bad that I am so unavailable for her.

My husband has been great, the meds are just doing quite a number on me. Indiana, you are right on when you say that anything that rocks the boat makes us crazy. It feels like everything there is in me is going into fighting the meds and the dragon, there is no reserve for everyday life.

But I will hang on - I want so much to get well. I have 2 dreams, finish college, and adopt my grandson legally.

WHEN I get well, maybe these dreams can come true!!!

[honey1616]

I'm so glad you are still here and posting.  hahaha I figured you were clear and now never wanting to think about hep c again.  But so glad you are still here checking in because you are a great help to all of us.  I just started this board first of Dec so never really got alot of details on how old you were, how long you had it, and how long you knew you had it?  You are a true sweetheart and I know your family feels all so fortunate to have you in their life.  Your positive outlook has got to be the majority of your cure.  I take it your sides were never too bad.  Take care and enjoy yourself.  Do something wild and crazy for us!!

[jg2001]

I just wanted to say what a WONDERFUL GRANDMOTHER you are!  You touched my heart.  Thank you,

Jamie

[DH Bill]

This Jan 1st is a bad time for us and our med. coverage. Most rates went up 30%, unions are fighting over it and insurance co. are fighting claims more than ever. Our controller at work predicts in a few years what we will pay for medical coverage will exceed or equal a house payment. The system is broke and driven by greed. WE HAVE TO LEARN TO FIGHT OR WE WILL LOSE.
Last week was the week from hell! After many phone calls I found a very kind person back in NY on Friday afternoon who said this is BS and promised me she would get some answers and call me back before end of buisness day Friday. At 4:55pm my time 7:55pm hers she called back and said I WAS APPROVED FOR THE REST OF MY TX. There are still some decent human beings in this broken system and I hope she is rewarded for this as I was ready to give up.
I'm feeling pretty good today. The withdrawal from Effexor seems to be over and my blood pressure is down and am sleeping good. The only drugs Im on now is Peg/Copeg and I believe it is right for me.
Thanks everyone for listening to me whine. My problems seem small compared to some of you but you still respond.
MAJ- thanks for your special help it did make a dif and helped me thru this with one less thing to worry about. Your a jewel.
MR Bill- glad to hear your good news.

[wengue]

Riba Rage sounds scary, I

[MajNeni]

Bill, it was my pleasure.  Now have a smoother ride.

Our union is also at contract impasse over insurance and who pays, how much copay, etc.  In fact, I've been kept at part time (they try to max you out at about 75%) with no benefits for 14 years; but the area is so economically depressed, that this is still probably the best job for me.  I have insurance through my husband, who works for the same employer.  The laugh is partly on them on this one.
Anyway, Pegylated Interferon w/Ribavirin is the "standard of care" for anyone with chronic active HCV, so no insurance co. or HMO should be able to deny coverage.  One thing I've found whenever they've questioned payment is that they want ICD code numbers on everything; the more ICD-9 codes, the happier they are.  Here are a couple of places to learn more about codes.  Your doc should write as many of the codes as fit on all orders; but you can coach.

ICD-9 Interpretation: pretty good
http://www.asnsw.health.nsw.gov.au/public-health/icd/icd9.htm

ICD-9 Coding Info

[Freefall]

This sounds like me.  I also was told that injectables had to be gotten from a place in louisana, the price increased x5.  I live in New Mexico.   I totally flipped my lid.  I think of myself as pretty level-headed, but this was so OUT OF MY CONTROL that I broke down. The rest of the day was "POOR ME".

The next morning, it was obvious to me that quitting (if the tx is working) was not an option.  I was able to get the pharmacy to send a week supply, so that I can work out a strategy.  One thing is certain, I don't have the cash flow, but I have two weeks to deal with the situation.  I had to get out of the negative and clear my mind of the anger.

Medical insurance companyies and pharmacutical companies are corrupt in my mind.  I work for the feds, and I once considered my insurance one of the best.  It's not the case anymore.  Unforunately, it's going to get worse.

All i can say is look at all your options, including tx.  If the treatment is working, you don't have much choice.  If you quit, the virus may mutate and reduce your odds of recovery in the future.  This is how I'm dealing with it.  I have two weeks. Something will work out.  I'm not giving up.

Take care
Freefall

[mother of three]

Hello folks, Today I felt about a inch high. Last night was not a good night for me , mad at the world , mad at my 18yr.old ,,,he had friends over  like he normally does, me feeling like a time bomb , things went on he left with all his friends , I got mad  don't even know why . I took all of his clothes out of the closet ,drawers . -3 degrees ,and through them all out side , in the snow. Well it't funny now, but what a embarresment when he got home , with same friends 2 hrs later, all his stuff laying in the yard . He walks in wanting to know what he did wrong. Boy did I have alot off landry to do today.... I can't say I have ever had that kind of rage before... I hope I never feel that way again . plus add pms!!!!!!!!lol   JILL

[ladyrio2]

I'm getting ready to start the treatments/ What is Reba rage and Tx
I need to now these things first hand.
Please someone help me.

[slarso]

Wow, I can relate! a couple of weeks ago I could not get hold of my doctor, It was not urgent, I just wanted a copy of my blood work. I went nuts! I was ranting around the house, thinking I would quit meds, mean to everyone! I had to leave the house so I deceided to go for a swim. I went to a pool, jumped in and flailed my arms about for about 4 laps. It had to look funny to see a grown man windmilling his arms. I am supprised that no one jumped in to save me.  I did mellow out and calmed down.Afterwords I had to laugh about it. I was gone!!!!!. It has gotten much better and now I recognize the onset of rage. When I feel it comming I have to go to time out.

In the medevial times the lepers had to walk around yelling  "unclean!", maybe we should walk around the house yelling "riba rage". In any event this is a time to use our get out of "jail free cards"

Steve

[Indiana]

Since you asked, I will tell you a bit of my story.
I am now 52. I probably got Hcv in the service about 1970 or thereabouts so I had this about 30 years before I started tx.
My whole journey actually started with Viagra! Hahahaha Ok, stop laughing. LOL  One week I took it every day for 5 days. Well...I was sitting at my computer one minute, and the next thing I knew it was about 2 hours later and my kids came home. They looked at me and said "What happened"? I went and looked in the mirror and had a BIG black eye. I must have passed out and smashed my face on the computer desk. This whole thing worried my wife a lot and I wass sent to the doctors to get checked out. They did every test known to man but could find nothing so they decided that since they could not figure it out I MUST have had a seizure...??  Well, this got me put onto anti-seizure meds for 2 years. These meds effect the liver so I was monitored pretty closely. After about 1 1/2 years they saw my alt/ast levels rise. They cut down the meds.....the levels still rose. They stopped the meds...the levels still rose. They did MORE testing and found HCV. At that time the current tx was 3x/week interferon A. The odds of a type 1b clearing with that stuff were about 10% or less. I said HELL NO. So, I waited...for 2 years until Peg/Intron was approved. I studied Hcv all during that time and found this forum then too. I waited to see what would happen to folks around here when they all started tx with it. Well, September 11th happened. Of coures, that is my birthday too so it was a mixed bag for me. Millions of people tried to give blood...and were promptly diagnosed with Hcv. They started a waiting list for the meds. I rushed in and got mine approved right before the "list" went into effect. That was Feb of 2002.
The sides hit me pretty hard. I was floored for about 5 days right away....High fever, shakes, pains, NO energy, all the classic stuff. Then I finally forced myself up to my feet and started stumbling around. I managed to get back to work by the nexy week but was still really shakey (shaky) for the next 4-5 weeks. Then came the rashes and itching. My whole face would fall off about every 5 weeks. I looked like ****. I felt high all the time. The sides would go through cycles. I never had them ALL at the same time but the cycles never stopped. I slowed WAYyyy down. I started laughing at everything. My imagination went into overdrive. Riba Rage Ruled the day! My blood counts dropped like a stone but stayed just above the danger levels throughout. I was constantly tired. I lost a buncha weight. It was NOT much fun.
But throughout it all I NEVER lost confidence that I would clear. I did everything I could to help that along...vitamins, green tea,folic acid, etc. I came here and saw folks that had it much worse the I did. We all talked about "The Truck" all the time. It hit almost everyone. We were all on the same meds so we could compare things much easier. We cried here, we laughed, I told stories, we fought about our opinions, and we learned from each other. I never lost my sense of humor or confidence all the way through. I dealt with the sides as they came and kind of "floated" all the way through it. It seemed like FOREVER. I did that for 50 weeks.
I was pronounced clear at 24 weeks in and again at 6 weeks post tx, 6 months post/ and 1 year post. I AM DONE WITH IT!
Thats my whole story in a boiled down version. Now you know EVERYTHING about me. I am my old normal self now...but new and improved.
Now what I want to know is...whatcha wearing?  hahahahaha  Just teasin.

[honey1616]

Yeah its pretty amazing all the people that are coming to this forum with all their amazing stories and some are so much worse of then others so you could kick yourself in the ass sometimes if you are feeling bad about yourself just thinking it could be worse.  Your story really helps me and all the 1's out there!!  hahaha what am I wearing??? Well condsidering it was shot night last night....hahaha I found me some really cute but bizarre slippers at Walmart.  They are super cushioney and leopard!!  LOL Hey you asked!  Thanks Indiana for your fun loving spirit.

[honey1616]

Vicki....Well what can I say but...that is priceless!!  I'm laughing so hard right now at the computer just thinking about you right there as people are talking about you!!  And you are dead serious...About running around town in your pj's...hahhahahaha This is too funny!  You are one crazy lady and I love your postings!!

[Indiana]

Well....Isn't THIS just a bonus to feed my imagination....(like it needs feeding now)  We've got Honey in nothing but leopard skin slippers and Vicki out in public in PJ's and shades....which are apparently enough for her to be "incog-Neato"!! And here I thought all I was gonna have for my fantasy life today was the Janet Jackson "Wardrobe Accident" at the Super Bowl yesterday. Hahahahahahaha  What a hoot! I bet you both still look better that I did on my tx. I looked awful. Being a guy I did absolutely nothing to improve my looks on tx. It was a plus at holloween and at the high school sports games. At least you gals are trying.
Honey...you should at least get some warm jammies on....maybe something in a jump suit ...with a tail...to go with those slippers. Hahahahahahahaha
Thanks for the laughs................

[ladyrio2]

Thanks, I appreciate your comments and since i found this site which was only 2 days ago, its been a real help  and people like you make things easier to handle.
Chat later getting sleepy
Oh the thing about reba rage I appreciate the explanation, now I use chill pills anyway. So I guess the reba rage will  really get bad.
Ha Ha

[britpeter]

I am starting second month of tx for genotype 1 and I had my first real ribarage incident sunday. Was visiting my sister and overreacted to something she said about me moaning all the time.
Big argument ensued and I've been feeling upset since. As I am also diagnosed as a slow cycling manic depressive, I am having real worries about ensuring tx will not act as a trigger for "episodes" and appreciate the opportunity to share my experiences via this board. Successful treatment in my case will represent a real feather in the cap for the hospital that is treating me, as I was a borderline consideration for treatment due to my history. I have no idea how I contracted, scored 15/22 last biopsy, also had one in 1993(4/22) and therefore not detected or investigated in 93.
My real concern is that in 2000, I complained to my GP of distension at base of right ribcage, was advised that she thought my liver was enlarged, was sent to hospital for further investigation where they then decided to look for gallstones, didn't find any and discharged me without any further reference to possible liver disease. I guess had they been more efficient, I could have been through treatment by now and probably with considerably less fibrosis present. That really annoys me, but as you guys on the other side of the pond say, I am determined to slay this dragon!

[ladyrio2]

How are the side effect treating you, can you tell me how you're felling and whats going on with your mind and body. What did your Dr. say about riba rage
scaredgirlfrom NC

[honey1616]

I'm glad to hear you are starting treatment and you are definitely in the right spot for step by step information.  haha Ribarage...I guess it does and can happen but for the most part alot of people on the medicine is a little quicker on the temper so its a standing joke to blame it of course and say "ribarage". I have had a few of those where you get totally frustrating that something is not going right and you find yourself getting all worked up but...I can usually catch myself and tell me to slow down and take a break so its probably more common feeling for us women that have experienced PMS.  haha And that can be awhole lot worse for me at times.  I am on week 3 of 48 weeks and first week was a little tough.  Flu like feelings but you get through it.  2nd and 3rd week I'm doing better and managing quite well.  I know I have a long road ahead of me but we all can do this...I have no doubt.  This board helps so much also with each ache and pain...haha you feel better knowing someone is feeling same thing even though that sounds bad to say.  You feel not all alone going through this by yourself.  Hope this helps some and I will be thinking of you!  Good Luck!

[ladyrio2]

I tell you the truth I don't know which to do laugh or cry. Scared girl form NC starts tx 2/14. I been reading the forum and its been a life saver, I have been finding out all kinds of info, things I really need to know. I ask my nurse about this reba rage, and she's like "what I've never heard of it" Its seems to be that its a big thing and I'm laughing so hard that i can't even type but what occurs, its this reba rage for real. Viral load 599,000, ALT 182, AST 156, Geno Type 3A. Meds will be Peg-Intro/Rebetol.
What an I too expect.
Please help the laughter was really encouraging and that fells great!
Scared lady from NC

[britpeter]

Sides are more noticeable for me first couple of days after injection day. Fairly constant nausea all week, but manageable, loss and lack of appetite so I have plenty of cup o' soups in the kitchen if I can't face cooking complete meal and I must say that I am ensuring I eat pre ribavirin. Aches, fatigue noticeable and if I  feel really rough, I take to bed for a few hours. This has only happened twice so far. Haven't discussed Riba rage with my Doc or the Nurse specialist in depth, did mention irritability and there was a usual nodding of heads. Know someone else genotype 2 who is 5 weeks from completion and he absolutely insisted that he needed some Valium to combat his Riba rage and reluctantly they Rxd it for him. He has found it helpful. Don't feel it has reached that stage for me, strange to say that I feel more aware of my emotional responses and someone else has said just this evening that the treatment has a whole range of psychological and emotional effects that are very individual. A lot of people seem to derive a benefit in the longer term despite the potentially tortuous route we are on so, don't be too afraid......it ain't pleasant but it seems to be tolerable......so far. Take care and Good Luck!