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Hep C Discussion Forum -> On Treatment -> Will I ever feel better?
Post Info TOPIC: Will I ever feel better?
KLG


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Will I ever feel better?
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Had my blood tests today. Doc reduced my RIBA to 600 due to hgb at 9.2. They'll check again next week. Maybe I will feel better but I wish they would have tried reducing to just 800 first...I know low hgb is normal on meds.

-- Edited by KLG on Friday 15th of March 2013 03:10:00 AM

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Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!
KLG


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I agree Malcolm. I have some difficulty communicating with the nurse. Seems like she starts conversations in the middle and it takes me a while to figure out what she's talking about. She was actually the one who raised the issue of the RIBA reduction with my doctor and she was passing along the doctors reply (or her version of the doctors reply.) to me. needless to say I am not doing anything until I hear it out of my doctors own mouth. Some of my counts are below normal and I suspect my nurse may have inquired about the RIBA reduction because when she saw me at last appt, i was also having difficulty breathing and had tachycardia.

I go in for labs every week so I will get an update tomorrow. I think it was the rbc and hemoglobin that were below normal.

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Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!
mallani


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Hi Kathi,

It's a worry when a Nurse calls and says you can drop your Riba to 800mg 'if you want to'. Do you know your Hb level? I would try to stay on the maximum possible dosage, because at 55, this is your best chance of clearing the virus. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
KLG


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Hi Zlikster, I suspect the drop in my blood counts is part of my problem too. Nurse called earlier this week and said I could reduce RIBA to 800 if I needed too but doc said staying at 1000 is best. So I'm staying at 1000 until they make me drop the dosage!

I'm trying to track my sx too, or at least trying to figure out what days I feel a little better. My sx were pretty light too the first couple of weeks but just got worse over time. Ah well, I just need to not beat myself up over the fact that I feel like crap because if push comes to shove I have the leave time accrued to stay out on disability for 6 months. (But that might blow a big hole in my plan to spend a month in Spain next year!)

Of course my decision to spend more time traveling now - rather than waiting until I retire -was fueled by all my stupid health problems. As they say, life is short, enjoy the ride!

__________________

Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!
Zlikster


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hi Kathy (i am also g3, on 24week riba/int)

i am desepratly trying to find sx weekly pattern, but no luck...every week is different. What i have noticed is, corelation between blood (WBC/RBC count) and feeling ****ty. As my WBC goes down i am getting constant small infections (throat, rash, nose, mouth) and as my Hg and RBC goes down i am sleeping more and have less energy. Still can't figure out why i sometimes have nausea for few days after shot, sometimes nothing. Yogurts seem to help it a bit.

I had really small sx first 2 weeks (except on the Fridays after shot), was hitting ski slopes almost each day, but now i feel like 90year old gramps... oh well, 4 more months of being ultraold

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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
KLG


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You're right DJ. We are lucky that that we are only on double tx and for only 24 weeks. I need to force myself to be a little more active next week and see if that helps.

It also helps to be able to chat with people going through the same thing, as others don't really understand how flipping crappy these meds can make you feel.

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Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!
DJ


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My doctor said that the third month gets a little harder, and she was right. My first two months were not bad at all, but I am in the third month now and I am much more tired than I was the first two months. So I wouldn't expect it to get better until treatment is over. I see you are Geno 3 like me, so honestly I think we have it a bit easier without the third medicine and we only have to go for 24 weeks...and I keep reminding myself that 24 weeks is nothing compared to the rest of my life, and I just need to do this now and get it done and overwith. Do what you have to do to keep on going. Life will return to normal later on. I am about 3 shots ahead of you.....and I will take my last one at the end of June, then I plan to rest in July and recover and go to Disney World in August to celebrate :) There will be life after treatment! Hang in there.

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Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
KLG


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Mary Jane, I confess that the wrist tat is not mine, I just loved the pic and its what I tell myself everytime I start a trial.

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Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!
KLG


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Sounds like you and I both work for social services 12stepguy, except you are at the beginning and I am at the "end." (I file legal actions to revoke licenses when the clients are abused/ neglected.) I handle all facility types - foster homes, child care, retirement homes, homes for developmentally disabled adults (aka"ARF's"), group homes etc.

Funny thing is that with the way I am feeling, I haven't even gotten to the point of wondering how I will do my job, I am still stuck on how I will even manage to make it to the lobby of my building without collapsing...



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Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!
JoAnneh


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If 12-Step Guy and Jime can't bring a smile nothing can!
You hang in there. You are fighting for your LIVER,
Can't live without it!
Pushing myself keeps me from wanting to
Cry and makes me forget about Hep C and sx!
I commit to church, bible study very laid back at
Friends house weekly and.....I go to work
Up to 2 days a week 5 hour day!
I also keep company books for our son's
Company.
Are u on double tx?

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
12Step Guy


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I'm on my third time down this road. What I've learned is to take it slow and easy. I mostly rest weekends, days, and evenings. And save what little energy I have for a few hours of work every other day. Lucky for me I work out of my home most of the time. But I still have to visit foster homes a couple times a week. (I license homes for developmentally disabled adults) but the visits are short and dont require much concentration.

 But Ive cut about everything else out. I get to one AA meeting per week, a little grocery shopping and asking for help with everything else. For me its not that it gets easier, I just try and adapt more. If it is any consolation youre not alone in swimming upstream against muck and mud. Practice acting scatterbrained now while you can, because at week 30 they will think it is normal.  Ive been hiding dollar bills in the fridge and putting Carols car keys in the freezer.



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Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
JIme


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Yes, you will. Probably not till after tx though. Each day is different.

I was able to force myself to work ( I didn't really have a choice ) and I think that helped me with the sx. I kept moving throughout the day and then collapsed when I got home. It worked for me.

Good luck! Drink water.

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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
KLG


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Shot #7 coming up on Friday. For some reason I thought i would start to acclimate to the meds but instead I just feel worse every day. My body just feels like it wants to collapse. I took the first two months off but anticipated going back to work part time April 1st. I just don't see how I can do it...

So I just feel like whining right now. Hoping someone will say, no worries, you'll feel great in a couple of weeks. LOL. Do you think it would help if I just force myself to be more active?

__________________

Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!
Mary Jane


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Hey Kathi... yes, you can have some cheese with your whine... everyone is different, and it depends on your job & how on your feet or stressful it is.. you're on dual trx correct? Ya probably won't feel like new money till ya finish trx.  You will discover ways to " let some things go" and ask for help. Be sure to get as much rest as you can, and enjoy the little things.. your liver says " thank you"  all the best to you ... P & L MJ 

 

PS love the tat on the wrist  " just breath" my famous saying , good one happy.gif



-- Edited by Mary Jane on Wednesday 13th of March 2013 11:21:30 PM

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Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
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