5 days left on incivek and stopped it

[working dog]

almost made it...too many sx...i hope some of this rash is from the incivek...its bad...lots of bleeding from clawing ..can't help it...it also is over more then half my body now...folks were saying "you look good"   not saying that anymore....so i figure i'll see if things get better in a few days...i plan on staying with the tx ...not stopping that...yesterday i fell in the driveway and almost really got hurt...just too exhausted......fell down over nothing really...anyway...thats that part of tx for me......billy

[toby47]

Good Luck with remaining tx, understand you had a rough time and you have to do what's best for you.These can be scary times worrying about sx and still staying on course, hope it gets a little better to carry on.

[GINGERPAL]

good luck billy...i hope you start to feel better.  ginger.

[belle19]

i hope everything works out for you billy.  take it easy and don't hurt yourself.  best wishes for you.  belle

[streamline569]

Sorry you couldn't make it all the way, but you did good for all you've been through and I'm sure it's still going to work out for you. I can so relate. I have two days of incivek left and for someone who hasn't had much of an itching problem t. I have to say this week is the worst. It feel like incivek is conspiring against us and laughing. The itching can drive you crazy, but then you have to be sane to begin with.

[aj7538]

Hopefully you will start to feel better soon. You have had an awful time of it. I admire you for sticking with tx. Get some rest, take care of yourself and dont drive. Hope the next few days brings you some relief.

[elpasolady]

You have really hung in there, Billy, despite your personal horror story.  I really admire you for your bravery and perseverance.   I can't imagine that 5 days less of Incivek, will make any difference.  Good luck going forward and may things get easier real SOON!
All the best to you....and may I suggest you stop driving until you feel more energy.  ( just a thought) :)
Big Hug to you!

[his3707]

Keep posting, we are here for you!  Hope you get to feeling better soon!  

[HectorSF]

Good luck to you Billy. You are a tough cookie that's for sure. You have been through a lot. I hope you are undetectable and stay that way.

Take care of yourself!
Hector

[nygirl7]

Wow you couldn't make it five more days?  Well I hope with all your starts and stops and reductions that you finally get what you deserve.  Und is a great thing but SVR is totally better!  Are you going to stop the inf and riba because it could have been that that was causing you to claw so badly, or an autoimmune problem like I got -  I have deep scars now and I was never on the Inc at all.........not sure if it was the auto from the INF or what.

Did the doctor even look at the rash to determine which was causing it (not even sure one could do so to begin with).

[screaming48]

I agree with everyone you have done well considering the problems and I think a few days are not going to make that be a difference. Best to you!

[working dog]

deb...i'm trying to listen to many folks...trying to weigh out everything carefully..hoping i can cure with as few future problems mentally and physically as possible ....remember i was on this forum before you...i saw you and others go through all kinds of stuff...i really like your input here but sometimes i think you forget ..you had a tough time too..and you were on soc...what i'm hearing out there is the incivek is tough on a lot of folks....not just me...and i don't want to mislead anyone....i tell it just like it is....billy

[can-do-man]

Well guy deb just wants everyone to win this battle, with the PI's now treatment can be so much shorter with a heck of alot better odds then those that had to do just SOC...... Shes one tough cookie, 72 weeks of tx, procrit twice a week, worked full time and raised two kids...... Just maybe thats why she wants to see everyone do this only once with much better odds.......... Thank goodness them 72 week plus treatments are a thing of the past.

[streamline569]

I think I can tell it's mostly the incivek when the only drug I take at 10 pm is the incivek and the itch starts to go crazy. It was OK in the beginning, but the cumulative effect takes it toll. Not to mention that the mental aspect of all this is not always dealt with and our patients can run thin. Some days I feel like I'm just going to go crazy. I've learned to stay by my self, Don't even want to see people when I feel like that. I think that one is the Riba, but not sure.We do this because we have to but for some there will be a braking point. I hope now without the incivek you feel better. At least you'll be able to tell us how you feel without it and we'll be better from you experience. Good luck Billy.

[lynda607]

"remember i was on this forum before you"  

According to this that's not true.

nygirl7 member since Jan 2007
working dog member since March 2007

[can-do-man]

Ny girl had to add a 7 to her nick, she was on here when i got here back in 2005

[lynda607]

I've read many of nygirl's posts and the one thing that stands out is how many times she thanked people for their support -  wasn't all about her.

Thank you is a wonderful thing to hear even when one is consumed by the side effects.  It shows you can look past yourself.

[nygirl7]

.Ny girl had to add a 7 to her nick, she was on here when i got here back in 2005 "  Ah you remember my sweetie!  :)

Treatment sure does suck, even just plain old 72 weeks of SOC but what I can't imagine is someone like DebC doing 72 weeks of daily infergen, that has to be the hardest thing in the world. Of course with all her diligence she did get SVR so it was worth it.  If everybody had her determination or an Andiamo or Susan this disease would be dead dead dead and that would be a magical thing. Someday.......

[can-do-man]

Yes my sis DebC, what a girl i could never even think about doing the tx she did, i'd have to grow alot bigger pair to handle that. Trins another tough one, if i was hep c i would leave her and never come back.......... I sure do miss them two.

As for Eric, i'm thinking he did the incivek for most if not all of the 48 weeks. Don't think many would want to do that......

[Mary4now]

I for one think everyone deserves SVR, no matter how much or how little suffering.  Its not a badge to suffer or not, its what we all learn from going through what we go through and how much compassion we can muster.  
working dog.  do the best you can and be kind to yourself,  good luck with your decision and i sure hope that itching stops.  I once had a reaction to penicillin that created hives on my palms and the soles of my feet, I thought I would die from the itching.
good luck to you
mary

[working dog]

ok maybe i was wrong on the time on this forum...my point is i did follow a lot of folks through their tx..and in no way i would say anything bad about deb....i think the folks that have been through tx are great to take the time to help others on the forum...in fact i've taken lots of advice from deb....i think though its hard to really know what anyone is going through...and with the new tx i try to get help as well as give help...heres an analogy .....i worked with and got bit by many monitor lizards...snakes..for many years.....anyway...i never went the doctors for it...many folks would get bacteria infections...i became immune to it..i never would tell anyone that didn't work with reptiles to not go right to the doctors...i guess heres my point...i have taken almost no drugs for so many years...even when i was a teenager i didn't get into heroin although i did help lots of friends through withdrawals...before tx i started an ad and it threw me into a zone that i couldn't believe folks out there could handle...like nothing...so i think these drugs affect us differently...1200 riba to me may be 1800 riba to someone that has taken drugs in the past...also with so many on triple tx now who that did the soc can say for sure its the same sx...anyway nothing against anyone here...and i plan on staying on tx...i do already seem to feel a little better after stopping the incivek 10pm last night....a few days will tell..i just about lost my eyelashes....the bottom eyelashes are gone...the tops thin...so many posts i use to read talked about their eyelashes growing on soc tx...so there may be many things in time we figure out...thanks to all here for the help....billy

[paen53]

You know I had recently wondered about that very thing, Billy - the eyelash issue. Not a major player in tx, to be sure, but so many of us had the llama lash thing goin' on as well as the Andy Rooney brows to add to the mix. At least that was on SOC, maybe things are different with the new meds now?
LOL, there was a time, a very short period of time that I felt rather glamorous with my fluttery eyelashes. The rest of me looked like heck, but, oh, those lashes!!

Pam

[pcds]

You should be fine stopping.  My doc said those that were able to make it with 8 wks of incevik can be OK and clear the virus.  Also said that 80% of meds taken gives same result as 100%.
I am in week 9 and suffering like never before.  I keep hoping tomorrow will be better as I get further away from week end, but today was a bad as yesterday and had to leave work early.  Each minute is painful.  I may have to throw in the towel and stop working the last 2weeks of incevik.  There is a cummulative effect from Telaprevir.  As more people go on treatment there will be more stories like yours and mine.  I don't even have a rash, although iching has increased lately, not bad.  Likely riba.  Anyway you are done with this lap, lucky you.

[katla]

Hi- sorry you were having such a miserable time, hope it gets easier...good luck to you.

[dixiechicdana]

I have 3 weeks left on incivek and it is HELLLLLL!!! Hope I hang in there. no itching but plummeting hgb levels. Wishing the best for you and SVR :)