Hi there folks,
Hi Kirstin, I really feel for you and others not being able to share what you`re going with your family and friends, it must be so hard for you. I have to say I agree with Ty, I feel proud to have got through tx too and I refuse to feel any stigma. I told all my family (apart from my elderly mum) and a lot of other people too, and actually found they were mostly supportive. My family know I was involved with drugs in my youth anyway. So what? The ones that weren`t supportive I don`t consider friends anyway. Hep C is serious medical condition and the tx for it is heavy duty stuff, regardless of how any of us caught it in the first place, and for a lot of you it had nothing to do with drug use. Anyway, thank goodness this forum exists where none of us are judgemental and everyone can talk openly. You should all feel proud of yourselves, dragon slayers!
All the best of luck with your PCRs Ron and Kirstin, we`re all rooting for you.
And to BeccaJune, great news about your soon to start tx! (love your name)
All my best wishes to you all, love, Jill xxx
-- Edited by Cinnamon Girl on Tuesday 31st of May 2011 08:07:42 PM
Jill (66 yo, lives in UK)
Gen 3a, 24wks Peg/Riba, Sep 2010 - Mch 2011
UND @ Wk.4 and @ EOT, SVR Nov 2011 --> Still UND @ EOT + 4 yrs.
We know what a Dragon Slayer you are Kirstin.
You will come through with flying colors on your first pcr. I was anxious for about a day then just decided to conserve my energy. We have done our part, so let the results be kind to us.
Glad you found the thread Ty, we are so glad that Becca may be joining PJ (and others) in getting the 24 week tx plan. I will be looking for a Tela script myself if my 4 week pcr is not extremely favorable. Thanks for the encoragement and the awsome 9 year UND report.
Genotype 1a Diagnosed in 1991. Started tx April 27 2011 for 48 wks. VL before tx 1.6 - 4.6 million. RVR-week 4, UND-week 8
Vitamin D3 suppliments can increase chances of reaching SVR. See Nutrition section for links.
Thanks guys, though have to admit that I am getting a little anxious about whether I will be UND or not.. Also excited. Could do with that little boost right now
BeccaJune- I am glad that I give you encouragement, thats what so many on here have done for me. Feels good..
Ty- gotta say, I think you are so brave, there isnt a chance in hell that I would disclose my status to others (apart from 3 people). My family, all of them (I have 8 brothers & a sister), dont know that I have HepC or what I am going through. I know that they would think bad of me & I just dont need that right now. So I'll keep it all to myself.. Thank God I have you lot huh?!
Genotype 3a Started tx 11 May 2011 for 24 weeks. With scarring. VL before tx= 4 million.. UND@4 weeks. UND@12
Hey you are all heros to me, because I know what you are going through! It's funny, because I was at a dinner two nights ago and I met another person who had gone through tx quite a few years ago. She was usually guarded about telling anyone because of the stigma involved.
Stigma? What stigma? I'm proud to have survived sixty years on this earth and made it through Hep C tx too! I pretty much tell everyone I meet that I was on tx for HCV, so she shared that she was about nine years UND.
She had gone through tx before time release Interferon so she had to do the shots many times a week, one of those early heros in this important battle. I felt like we had this big thing in common and when we were sharing our expeiences it was an interesting bond. The drugs do sort of reach into our soul and change us, so I hope I've become better, not just in my health, but in my mind.
As Greg says, we are dragon slayers and we are tough enough to win! So welcome to the forum, BeccaJune (and I can't believe I missed this thread, lol)!
Good luck on those four week tests Ron and Kirstin!
Hellos to Jill, Elizabeth, Leslie, Greg (Great new pic, btw),Gail, Randy and James! Take care, ty
Genotype 2 - 24 week Tx - Start 10-8-2010 - 4 week PCR test UND, 12 week PCR test UND, 24 week PCR UND, SVR Oct. 11
Ron and Kirsten,
That goes for me too. You are both so encouraging to me, and I am hoping for the best!
Diagnosed Dec. 2008. Genotype 1b, enlarged liver. Started triple tx with Incivek on August 12, 2011.
Hi Ron & Kirsten,
Just dropped in to wish you both all the very best with your 4 wk blood tests.
You got your health, You got your wealth!!
Well I am glad you like it lol & Yep, we are arent we?!
The one thing that I treasure most is that we can come here & no-one judges us (about the Hep C), that in itself is priceless. I haven't been able to talk to anyone about it before, I just dont trust people, even my friends, family, enough to speak about what I am going through...
Thank you for your kind words, I've never been called awesome before, I like it...lol, but the truth is were all awesome each and everyone of us for doing this and so are our friends and loved ones who support us. But here on this forum we are brothers and sisters and that is a special bond no-one else can share.
Your very kind,Greg x
The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
Greg, I admire your outlook & optimism on things I love how even though you are going through what you are you always have a kind word, always are upbeat & encouraging, thank you . I have no doubt that if anyone can do this first time round then it's you. Your awesome!
Cheers for that mate, I was given the option to reduce the riba earlier but I wanted to be UND before I took the offer up just to be sure, your dose is high but then I'm only jockey size.... lol Looking forward to your results all the best for those mate you'll be right.
Best of luck,Greg
We are all pulling for you Greg,
I suppose I need to start being happy that I'm receiving 1400 mg. a day with no reductions. Hope its an indicator that I'm a Dragon Slayer. My 4 week result is due by Wed.
Appreciate your kind words and wish you all the best for Friday you'll be fine, as Jill has said your genotype is 3a your most likey to be UND at week 4 which will be fantastic. I have spoken to my specialist about Telaprevir and that is an option which I will take if need be, but this dragon is going down the first time....no mercy!
We are all Dragon Slayers,Greg
So many variations in ribo doses amongst us ...i was on 1200 a day, 3 morning and night for 48 wks..prob expains why i lost so much weigh..
keep up the good work everyone its great to see the way you are all so friendly and kind all my love
48 wks tx..23 feb 2010..vl 7 million/no scarring/Genotype 1Detected@wk12(15 copies)UND@wk24UND@wk36..UND@wk48..Finished tx Jan 18th 2011..SVR JULY 2011from the dark end of the street.........to the bright side of the road............
Hi Kirstin, a lot depends on your genotype as to how soon you can expect to reach UND, and as you are 3a you stand a good chance at 4 wks. Good luck!
All the best, sorry for butting in there....
love, JIll xxx
-- Edited by Cinnamon Girl on Sunday 29th of May 2011 02:55:08 PM
I will cross my fingers & send you all my luck & best wishes for week 24 then Greg.. Have you spoken to your Doc about Telaprevir? Do you know when it will be available here?
No I'm still now detected at week 17, I have to be undetected by week 24 for my genotype which is 1 to continue treatment.
-- Edited by Greg on Sunday 29th of May 2011 08:17:56 AM
Even that one more would make a huge difference to me Greg. 4 is hard enough.. Oh! I wanted to ask.. Were you UND at 4 weeks? I go for my blood test this friday to find out where I am.. Kind of nervous about it but also needing that good news just to keep me soldiering on
That was 6 to start off with for 2 weeks only, then down to 5 a day now. Hope to drop that down to 4 if I'm Und at week 24.
Greg- wow! 6 a day?! Oh boy! The 4 are enough for me, I couldnt imagine having to take 6!. I started both Riba & Intereron on the same day, a wednesday... 6 a day
Welcome to the forum and congratulations on starting to kill this beast soon. When I first started tx I was taking 6 Riba a day for two weeks =1200 mg for the first two weeks to get my system kick started so to speak, then down to 5 a day, 3 in the morning and 2 at night = 1000mg. So I started on a Tuesday and had my first shot of Interferon that Friday evening. Your doing the new trial so wish you all the best and you might even finish before me. Best wishes,Greg
LOLOLOL!!!! I told the reps from Vertex that they should call the drug, " Saniflu****". No kidding.
I was on the 2nd human trial. I won the entire prize, got the real thing and stayed on tx for the entire 48. Teleprevir was still a number (VX-950).
HAHAHAHAHA SAN UH FLUSH IT
oh man, I crack myself up.
Good Luck, keep us posted how you feel on the saniflu**** (teleprevir).
Welcome to to forum Beccajune, congrats on having the courage to knock this so called dragon off its course and take control. I also take 800 mg riba per day, they are 200mg pills and I take two of them twice daily. We will all be interested to know how it's going with the new telaprevir added on, keep us informed on how your doing.Take care, Randy
"Ah but I was so much older then, I'm younger than that now." Bob Dylan
Thanks for the insight James. I was wondering how that worked.
All understandable concerns Becca,
I stayed undecided for 20 years and finally decided *once I hit 50 years old) that this is not going away unless I do something about it. Even though I was experiencing a minimal number of symptoms I was ready for tx in almost every possible way.
Now that I have started I wish I had done it earlier. Most of my fears were exaggerated and secondly I think it would have been a little easier at a younger age.
We all have our own choice to make and are ready when we are ready. Just don't tempt fate and get into liver stages where tx is no longer an option or wont work.
My understanding is that tx works better earlier on in the progression, but I'm not certain about that.
Ron, Maybe because you have to take more because you weigh more than Kristin?
Well, I'm moving forward with this, but I'm having doubts as to whether I should start this journey now or wait. I really don't feel that bad. I know it won't go away otherwise though. I am 56 and worried that if I wait until I'm older, it will just be harder.
I'm just hoping that I don't end up feeling worse after tx, than before I started.
Ok, I'm jealous Kirstin,
I take 3 in the morning and 4 at night.
When I wake up I feel like someone has been throwing rocks at me all night. lol.
About the Riba.. Yes, 2 tablets twice a day for me
Telaprevir aka Incivek: I'm gonna have to get used to the new name.
Anyway after approval by the FDA on Monday, I got a call from a "specialty" pharmacy on Tuesday to get my insurance information and start the approval process for a prescription. My doctor is on top of this and already had me on the waiting list. They expect it to be a couple of weeks until the insurance companies assign a code number to the drug. After that we'll see....
I really wish the trials were completed for the 12 hour dosing though. It just seems that the dosing would be so much easier to take every 12 hours than taking it every 8 hours.
Is the ribavirin usually taken twice a day?