hey Dawn,

so happy to read your posts, everything sounding better and better. RIBA will keep raising its ugly head but now youve got your eye on the prize, it's hard to look away isnt it?

And undetected already! 

So happy for you. And as you can see, my own guardian angel's feeling laid back sitting atop all those discarded boxes and bottles (okay, okay, I'll admit there's some unopened riba there !)

you'll be here too before you can blink. 

Big hugs,

Syd

Hi Dawn et al,

That was a great read from start to finish. I felt your anguish at the beginning Dawn, I was the same when I began Interferon and Riba. I stopped treatment by about 4 weeks as I went into bad panic mode as red and white cell counts dipped fast after two weeks. Once the conversation came up if I got worse I would be considered for a blood transfusion, I quit. Blood caused this problem in the first place - my logic at that moment. ;) Riba and I do not get on at all and aren't friends. Strangely enough, I had no symptoms from Interferon of which I was most scared off.

Rather than your journey being one that will put people off, I think it will encourage people to carry on, although the rug might not agree, and the chair felt sore. ;)

Seeing you come through positively is a really wonderful thing to read. I am not worried this time for side affects like last time, the mind can sometimes create more monsters when unprepared. I really enjoyed reading everything, of course not your discomfort or worry, but rather seeing you through the thread coping once again. Sorry to read about the past and what happened, that is a tough cookie to swallow, but also every reason to beat this, too much sadness has happened already!

I look forward to hearing you remain UND. Congratulations, the best gift for yourself and family you could possibly give!!!

YOU GO GAL!!!

Had some catching up to do on this thread and WOOOOEEEE Dawn. Another dragon going down.

This is absolutely one of the best threads here.

Jimmy

Thank you Dave I was hoping I was doing it right. How are things going for you? good I hope. I hope you are going to get to do something fun this weekend. I know I have said it a billion times but thanks again for everything   Have a great night  Dawn

Nice work on the signature, Dawn. (Thanks)

That'll help keep you from getting so many questions (Some of us tend to forget, even if you've told us a few times ... LOL).

Yup, you can sleep well now, knowing that the meds are working VERY well.

Take Care,

Dave

Jill I am so glad you found at flat looking forward to hearing about it   hope you are well and thank you again 

Dawn

Thank you so much that makes me so happy I was so surprised but was unclear exactly  what it ment. I just finished week three. You have all got me here because as I said I was going to give up thank god and all of you I didn't. This really has given me the push to keep going and no matter what happens in the end I am glad I have done it , grateful to abbvie and all of you that helped me push through and keep going. There really are no words that are good enough to express my gratitude. We are all going to beat this no matter how long or how many tries it takes and have a big family reunion and compare riba stories lol  You guys are the best      Dawn

Yes Dawn ... RNA (Viral Load test) "Undetected" is the Absolute Best News you could get right now.

WONDERFUL, excellent news!!

When did you start treatment and when did you have testing done? (To avoid having to keep answering the same questions over and over it's best to add a signature line ... see link with instructions on how to do that below.

Here's how to add information to your siganture line, Click This Link

Notice that we each have information there about our:

Intial Test Results (Viral Load, Genotype, Stage of liver damage [e.g. F2 or F3 etc), ALT

SOT Date (Start of Treatment)

4 week Test Results (Viral Load, ALT)   <----------- You should add UND here

EOT Date (End of Treatment) Viral Load, ALT

EOT +12 weeks (Viral Load and hopefully SVR)

Dave

p.s. Congrats on this Most Excellent News, happy for ya!

That's a beautiful thing Dawn! Congratulations on the fast results, woot!!!!

Dee it is time to update your signature.

Put the Date of your blood test right after your mention of VL. Then add UND!

This is what it is all about!!

Jimmy

`RNA not detected` is not only good, it`s great!!  It means that the virus was `undetected` in your blood stream, which is exactly what you want to hear, congratulations, Dawn!!  

You must be on your 4th week by now, is that right?  And you saw your doctor and had your blood drawn about a week ago?  Which means that you`re responding very well indeed to this treatment!! 

Thanks, I think I have found the right flat now, at last! 

Thank you so much you always make me feel better.  Have you had any luck with finding a flat you like? It is fun looking but a stressful process. I had a question I got my labs done at my regular doc and I asked about my viral load and the nurse who read it said she saw RNA not detected is that good ? I am not sure what that means and my hep doc said we would discuss my results when I go back in there but that's not like for three or four weeks so was just wondering if you knew    Hope all is well Thank you for the beautiful post   Dawn

Hi again Dawn, I like your attitude and sounds like you`re handling this so well!   You`ve kept going even when it`s been very hard for you and that takes a lot of guts and a lot of will power, and you`ve obviously got plenty of both.  You`ve been through some extremely difficult times in the past and had to learn to grow up very quickly I should think, and whereas some people would have gone under, you fought back and became stronger.  You`re a fighter, and you should be proud of that, my girl! 

I`m doing fine, thanks, busy flat hunting at the moment as I`m planning to move to a different area in the near future, all being well! 

Keep going, deal with it one day at a time, and don`t forget to drink your water, and then drink some more!! 

Thank you that means a lot

    Dawn

dawn

Dee I think you are doing great. As far as the "poor me" thing I saw no such thing in anything you have written. What I have seen is you honor us in how you were feeling and reaching out exactly in the fashion that this place is designed for.

Keep up the good work!

JimmyK

Hi Jill I hope everything is going well for you and you are feeling well , you are so kind to check in on me and as I said to jimmy I could never have done this without you all. You have been wonderful and put up with my complaints and always made me feel better. You are right the riba rage is interesting my kids have that "  we may need to commit her" look in their eyes lately lol  It definitely is getting better at least I am having normal days and now when I feel like im going to blow I just try to go to my room and stay in there for a while. I think even my dogs are thinking about moving out lol    How are things going with you I know you have been busy. I just want to thank you one more time for helping me get back to myself at least for the most part sometimes I need a kick start to pull me out of my funk and I really have found it here. A million things have gone wrong today but its ok because I feel like I got this at least today and that's all that matters. I could never have got here without you thank you again and again    Dawn

Thank you jimmy and you are right I didn't think I was going to make it but thanks to this forum and all of you is the main reason. Thank you for the kind words. I am over the "poor me" for now at least lol and trying to remember how strong I used to be and where this wimp came from lol . my dad drown when I was young I took care of my mom when she died at age 48 from hiv and lung cancer   the grandparents who brought me up I also took care of until they passed and my brother died from diabetes at thirty and left my ex dirtbag and was a single mother of 5 and made it through and  I look at myself now and say wtf happened to you. I am sorry I whined so much but you have all been so supportive and have helped me find my old self and I will be forever thankful for that. I was lost for a minute there but I feel like my motivation and strength has ben restored. How are you feeling I hope everything has been going well I can never repay what you have all done for me but if there ever is anything I can do even if its to lend an ear I am here  thanks  Dawn

Hello Dee.

I have to chime in here to say I am incredibly proud of you! To be honest I did not expect you to have remained on treatment to this point. Sorry but I would be lying to say differently.

That you are fighting as you are is for me awe inspiring! YOU GO GIRL!

I am extremely excited for you!

Jimmy

Hello Dee, just want to let you know I`m thinking about you. 

So now you know what a full blown riba rage feels like!  I`m glad you can look back and see the funny side, that`s the only way to deal with it, and next time you`ll be prepared!

I`m so glad you`re having a few better days now, keep thinking positive, you`re getting through it! 

I know it is really funny now and it would be just my luck to sit on it and land on my butt. It is probably a good thing I had no gas lol now I know what everyone one was talking about with the joys of riba rage all you can do is keep laughing. Thank you for reminding me to check the chair I would have forgot  and now I can put the exercise stuff on the bare floor since I decided to assault my rug and throw it in the trash   Good times  lol     hope you are doing good Dawn

Hey Dawn,

I'm not laughing at you, but with you! Good ol Riba has it's moments some days, doesn't it? I'm glad your car needed gas, you might've had a road rage incident too. Do me a favor now. Go check that chair and make sure the legs are all firmly attached. You might sit on it and a loose one would put you on the floor. Chairs can be sly that way. It's chair Karma, bad stuff, lol! 

Sounds to me like you're getting a good handle on this. Keep it up!  

Hi Dave thank you for checking in I appreciate it. the good news I have had some normal days except for yesterday I flipped out broke a chair threw out my rug and got in my car and was going to run away from home lol  But I had no gas lmao figures  Then I calmed down went to bed and woke up perfectly fine today. So while I was having a good day I went to some yard sales and got some cheap exercise equipment and a few things to cheer up. I am drinking lots of water and trying meditation as well. I have made friends here and an so grateful to you all thank you for the help and advice. How are you doing and feeling? have you done anything fun lately I hope so. I hope you are doing well and again I appreciate you checking in. if you need anything I am here as well   Thanks Dawn

Hi Dawn,

Just checkin' in on ya, hope you're doing Ok.

Hope you are remembering to drink LOTS and LOTS of WATER and eating well ... for that is the key to getting through Tx with the least difficulty.

For the rage ... a little exercise (with Water) is helpful and releases some endorphins that REALLY help smooth the waters.

I see that you are making new friends and seem to be holding up well, good job!

Just remember that we are here and you can count on all of us to help and guide you along the way if needed.

In spite of what seems like trudging through molasses as far as time goes, Tx actually goes by pretty darn quickly and before ya know it you'll be gazing back and will be waiting (once again) ... but this time for confirmation of SVR.

You're well on your way, if the going gets tough, try some music or meditation in whatever form you like ... drink more water and stay in touch here.

Wishing you well,

Dave

I m so glad you are feeling better. Congratulations on your granddaughter that is wonderful news. I think the fact our "grown" children are emotionally younger and needy is what keeps us going no matter how crappy things get lol. I am so glad you live near your daughter and grandchildren especially after what you went through with your ex. That must have been awful. You should be so proud of all you have accomplished after fighting to get your life back and on top of that fighting this horrible disease. It is definitely time for you to have happiness good health and freedom to make your own choices and everyday will only get better. It is funny after going through things as hard as you have been through when bad days do come along you can almost smile and say I will take this crap any day compared to the past. I feel a lot better hearing that things are good for you right now it actually helps tremendously. It is very inspiring.  I did read some of the posts it was really funny especially when she hit the lady who was hitting her child with the stick that was great.   Hope you get some time to enjoy the new baby and talk to you soon   Dawn 

Hi Dawn,

Yes thanks. I feel heaps better than when I was on riba. Aannnd my daughter finally gave birth to her third baby today - it is a girl and they are both healthy. I know what you mean about your kids. My youngest is 24 on paper going on 10 emotionally and I'm not sure what would happen if I wasn't here. (It'd probably be the making of him as he plays me like an old fiddle, but hey I'm not going to admit that.)

Living  around the corner from my daughter and her 3 and 1 year old is a delicious treat I never expected in this life. My ex was a controlling, jealous border line personality disorder type and I was only allowed to see my kids on infrequent occasions (forget other men - everybody was a threat.) So I never take my freedom to make choices about what to do with my day for granted. It makes my time with them doubly special. 

Hoping you are coping okay. Have you read some of firechics posts while she was on RIBA? Or Linuxter? Strongly advised for lots of good rueful laughs.

take care.

Syd

I am sure you are right. I am glad you have a understanding doctor that is so important. are you feeling any better now that they have changed things? I really hope it has made a difference because you have been through so much. I have faith we are both going to make it and things will be good I guess as they say what doesn't kill you makes you stronger, and as you said it sure does beat the alterative of dying of liver disease. I am still grateful that I even have the chance of trying the treatment even though some days I definitely do not act it. What really keeps me going is my kids, just when you think they are almost old enough to start handling things on their own they cause yet again some kind of catastrophe and I know I have to be here they are still not ready lol  I really hope you are having a good day and thank you for your understanding   talk to you soon  Dawn

Hi Dee,

maybe they think it'll be a placebo effect thing and if they tell you you are likely to have these symptoms it will make it more likely to eventuate. 

But when you go in, palpitating, crying your eyes out, rashes everywhere, too tired to move - maybe, just maybe you would think they could be a bit reassuring. My own hepatologist is  a lovely woman. She didn't warn me but when I went down like a bag of cement, she understood. It was the hospital visits I am making at the same time that have done me in. 

Anyways hopefully soon it will be in the past for both of us and it sure beats dying of hep c related liver disease.

Syd

thank you syd I am lmao 

I am so glad you are better from  that horrible stuff and you are so right about all it causes. I really do believe the doctors who think like that should have to try it lol

I know some of them are great but I don't understand how they can say these things cant happen when it says it on the bottles or inserts that come with the medicine it baffles me. Thank you for checking in and help me to know im not crazy I hope everyday is getting better for you and you are doing well.If you need anything or to talk I am here    Thank You again  Dawn

Hi Dee, 

what dumb prigs some of these doctors are. I was in Ribaviron for 12 weeks. My haemoglobin went down but not so low that I was taken off it. It's a horrible drug. It causes skin irritations, stomach upsets, changes in taste and smell, sleep issues and for me, the emotional damage was the hardest to deal with. I felt so vulnerable and flaky. Knew I was getting really angry about things that normally wouldn't bother me, I didn't want to go outside or see people. Trying to judge how anxiety and  depression are being caused by a drug is pretty hard from within your own head. And when you have dicks denying riba's effects its impossibly difficult.  

When I stopped taking it, it was as though someone had pulled a plug somewhere on my body and all this poison was just leaking out of me. I still have some side effects 12 weeks later but they are nothing compared to being on treatment. You should be on a weight based amount - I am 62 kgs and started on 1000mg daily. It was reduced to 800mg at 4 weeks. Many doctors do that and it sounds as though yours, at the very least, should too. 

Good luck

Syd

ps. Many doctors are lovely empathetic people but many are arrogant pricks too and that, plus the stigma of the disease, is something to consider too.

good luck,

I have been thinking of you lots.

Syd

You are all the best I needed a good laugh and it is so true. Thank you Pablo and I pray all goes well so you do not have to put yourself through any more and your advise is greatly appreciated.

thank you Wendy and good for you I am glad you have a great doc it is shocking sometimes how they can act. You have been so kind through all of this.

Thank you Tig you are so right I wish they could take this stuff and see if they still have the same attitude or I should have asked him if he would like to spend a week with me and see how fast that might change his mind lol. Your advice always helps tremendously thank you I am going to try it all.

Jimmy you always crack me up it is good to laugh so hard. That is the most truthful thing I have heard and they know it that is what gets me. I am thrilled you are doing great please don't feel  guilty You have suffered enough and no matter what has ever happened in the past we have all paid our price at some point you do not deserve a bad ride all you deserve now is happiness and a new chance for things to get better and it will. All of us on here have made our mistakes but have fought to make them right and the fact that you all take your personal time out to help all of the scared people on here or even just answer peoples questions and give encouragement and support shows your true character. You are all like guardian angels just giving of yourself for nothing in return. I am truly grateful to see that there are still selfless people in this messed up sometimes scary world. Thank you and if there is ever any way I can help please let me know I wish I could some how repay how much you have all helped me   Dawn

Hi Dee

Sorry to hear your troubles.  I can empathise greatly.  I did 16 weeks of ribavirin in 2003 or 04 and it was horrible.  I could tolerate the interferon (some mood and sleep issues, but it was OK) but ribavirin made me so anaemic my heart was pounding when I lay in bed at night.

My doctor says if the trial I'm on fails (8 weeks sof/vel/GS-9857) then I'll need 24 weeks of Harvoni and ribavirin.  I really hope it doesn't come to that.  The doctor says the ribavirin-induced anaemia is less without interferon but that's little comfort.

Hang on it there.  And if the ribavirin issues become too much there should be some flexibility to reduce the dose and let whichever DAA you are on do more of the work.  Other than that I don't have many tips around how to tolerate it other than drink lots of water and don't stand up suddenly (postural hypotension from anaemia is a bugger).  And don't be afraid to ask for a light sleeping tablet (which I was reluctant to do, being in recovery and all that, but if needs must...).

Pablo

Hi Dee,

I'm sorry you were treated that way. I wish some of these people would have to experience these side effects for a few weeks before they could qualify to make any remarks. Coughing is a well known side effect from Ribavirin. Dry, hoarse, tickley and can get very sore. 

Aside from seeing your GP doctor, which I recommend, there are some things you can try. If you have a humidifier, get it out and get some moisture in the air. Riba can really dry out your airway. Try a numbing throat lozenge, like Cepacol or the spray. It really helped me. Ask your docor about some recomendations, they can prescribe many things that will calm it down. I developed what's called Thrush and that was miserable. We can experience a multitude of issues, some mild, some bothersome. Your doctor and staff are there to listen. If they don't, then find someone that will.

The heart complaints have been mentioned by many as "flutters", "galloping" or just plain uncomfortable. If they can rule out another problem, it's likely the same issue and may bother you again. The first few weeks take some getting used to, so try and tough it out. If there is anything that makes it easier, remember it at the time and try it again if it starts to bother you. Whatever works to get beyond the spell. If you can control the urge to blow a gasket and panic when it starts up, you may be able to avoid a full blown attack. I don't know if you meditate, but try and find your happy place when you feel the problem coming on.

I want you to keep on venting. It helps to get it out there and we can often help. Keep hydrating, try the humidifier or even start a hot shower and sit in there in the steam. Take a book with you. Good luck, keep in touch!

Thanks for asking Dee, I am doing great. Sometimes when I see others around me suffering I feel guilty that I am not. In most cases if anyone deserves a bad ride, it's me.

The drugs you are taking are not "benign". Used in the term they did it implies "gentle or kindly."

Does this sound "Benign"?

The primary clinical toxicity of Ribavirin is hemolytic anemia. The anemia associated with Ribavirin therapy may result in worsening of cardiac disease and lead to fatal and nonfatal myocardial infarctions. Patients with a history of significant or unstable cardiac disease should not be treated with Ribavirin [see Warnings and Precautions (5.2), Adverse Reactions (6.1), and Dosage and Administration (2.3)]. 

Taken from: http://www.drugs.com/pro/ribavirin.html

Are you seeing an actual Hep Doc?

If they had used that term with me I would have asked them to look it up first and then look up "obtuse".

Ask your PCP if they may have another referral to someone living on the sunny side of a rock.

This is not acceptable.

Hang in there sister.

JimmyK

Thank you  I posted when I got home but I was mad so I decided to delete it. I told them about the pounding heart the rash the trip to the er the crying one minute and yelling and screaming the next being out of breath walking to the mailbox and the cough that is so bad I have been awake for days from it , the paranoia and the other day at my primary care  I had a fever and my blood pressure was up. So they said to me I am the first patient to have these problems because these are pretty benign drugs. They told me to get my blood work done either at the hospital or my primary doc  and I asked when I could get the results and they said four weeks when I come back in. I left before I lost my composure because I was pretty sure my non existent riba rage was about to prove them wrong lol  so I cussed my way out the door and decided that today I a going to go back to my primary care doc and have him do the blood work and try to do something about this cough. I am not as mad today which is good I do not want to waste my energy on it I am just trying to keep my eye on the prize thank you for listening to me vent I feel better knowing someone out there understands Thank you so much    How are you doing jimmy I hope all is great. I hope you are doing good as well wendy thank you for checking in that was really thoughtful of you . Thank you both for everything

 Dawn

Dawn like Wendy I also want to know. How did it go?

Hang in the sis!

JimmyK

Dawn how was the appointment? 

Thank you so much Wendy I am going to get some and try it tomorrow I cant take this cough much longer. Thank you for your positive thoughts and prayers I really need and appreciate it. You have twins that is awesome ,hard work but so cool. I hope you are doing well thanks again   Dawn

You are in my prayers Dawn. Hopefully it will be a simple fix, adjustment etc. I am going to think positive. Here is an old wives tale that I found works for coughing, put vicks vapor rub on your feet and sleep with socks on. Did it to my twins when they were little guys and it was hard to keep the socks on em but it helped. 

Hope you feel better soon.....Tuesday is right around the corner. 

wendy

Thank you Jimmy that is what I was worried about. I will make sure I do that. I hope all is well with you and things are going smoothly. Talk to you soon Dawn

Hi Dee,

Important to remember. If your Doctor takes you off the Insurance Company pretty much has to go along with a different treatment plan.

If you just stop however you give them reason to give you a very bad time getting approved for something else.

Hang in there Sister! Get to you Doctor and work closely with him or her.

JimmyK

Thank you all so much as I said before I would not have got this far without all of you. I called yesterday and they said to report it to my doctor as well. I have an appointment Tuesday hopefully will see what is going on then. Tomorrow will be the end of week two but it sure feels a lot longer lol. The other day I was just ready to stop I just wanted to feel back to normal but I got on here and read all of your brave stories and the things all of you have been through and it gave me my determination back. Even if it turns out that they take me off and I do have to try again or if this treatment just does not work for me I know I can keep going and keep trying because of all the wonderful people and support I have found here. I feel really lucky and blessed to have stumbled across this forum. Thank you so much and for now I am going to continue and see what happens on Tuesday. I hope everyone is well and has a great weekend planned. talk to you soon Dawn

I adjusted my RR with a more positive mental outlook. Being on a former failed regiment I just figured take this stuff or call it quits. Let the Dragon digest me? Nope, this was not 48 weeks. Just 12. Yes, I had the rapid heartbeat too. No rash. Headache. But most of my side effects leveled off at 5-6 weeks. I will never forget going out in the sun and my arms and feet felt like lead weights. So watch that. It's really just about grit and determination to stay on course. Hang tuff, you will pull through it. After 10 months off and being cured, yes "Those Riba blues are Gone ". (sounds like a song we should pen Tig).......

You will be fine. Good Luck. Have a great week-end family!

Hello Dawn,

I think you`re very brave sticking with it when you`re having such a difficult time, and I really hope that things settle down soon.  I do tend to agree with what Syd said though, and if these severe symptom carry on for too long you might have to think about discontinuing with this drug combo, wait a while, and then try something else.  You do have other options, so don`t let yourself suffer unnecessarily.  That`s a decision that would have to be made in discussion with your doctor though, and I would follow his or her advice.

Keep in touch and let us know how you`re doing, you know we`re here for you any time, and you`re welcome to message me whenever you like. 

Sending all best wishes, look after yourself, and rest as much as you need to...

Good luck!  

dee71 wrote:

---

I am so glad to hear you finished that is awesome and I will be saying a prayer for you I am sure it will be good news. Nice to meet you by the way hepcmanny. Did it happen all through treatment or did it get any better? It does help to know other people share the same experience. I have read that some people have had not to many issues and keep thinking what is wrong with me and i get frustrated so it really helps to know you understand what I am going through I know everyone is different and some react different than others but it still makes me feel better to know there are people who have similar issues. Thank You , Dawn

---

 Only happened on a few occasions - rest of treatment was smooth saliling. I went to the doctor just in case I was having having major issues and all my blood work came back normal. 

as you know, you have to eat before taking Viekira - my body got used to eating breakfast (I am not a breakfast person) and now I am starving and gaining weight. lol. 

hi dee,

I agree with jimmy. please contact your dispensing pharmacy or even better, the doctor who prescribed the riba. Your symptoms sound too severe to ignore. As jimmy says, we are not doctors. There are other protocols out there, maybe you will have to try a different one without riba. if so, that is far better than getting seriously sick on something your body just cant tolerate.

Take care,

syd

Jimmy that is wonderful news I am so happy for you please keep me posted on how you are doing. This is going to be the one for you I know it. Has it gone smoothly so far? Thanks again talk to you soon Dawn

I am so glad to hear you finished that is awesome and I will be saying a prayer for you I am sure it will be good news. Nice to meet you by the way hepcmanny. Did it happen all through treatment or did it get any better? It does help to know other people share the same experience. I have read that some people have had not to many issues and keep thinking what is wrong with me and i get frustrated so it really helps to know you understand what I am going through I know everyone is different and some react different than others but it still makes me feel better to know there are people who have similar issues. Thank You , Dawn

dee71 wrote:

---

thank you so much I will call them today. Did you start your new treatment if so how is going I really hope and pray things go well for you. You deserve it. I appreciate the advice as always .Thank You  Dawn

---

 Yes I started the Harvoni. I am well into it now. I only have 140 days left to go!  LOL

Thanks for the kind words and the Specialty Pharmacy is pretty good at helping and they have quite a bit of your information we here don't.

JimmyK