Hep C Discussion Forum

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!!!

This is absolutely one of the best threads here.

Jimmy

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

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

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

`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! 

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!! 

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

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, 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! 

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 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

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

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

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

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!

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 how was the appointment? 

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

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

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!

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. 

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