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Hep C Discussion Forum -> On Treatment -> UND finally! ;-)
Post Info TOPIC: UND finally! ;-)
streams of life


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RE: UND finally! ;-)
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my name is anita and i just logged on yetresday. I start my treatment may 14. I am genotype 1a and 4th stage of liver. My doctor says wihtin 11mons. should be cured. I taking the 3 that combine together. could you share alittle what you have experienced?

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Anita K Fine
Zlikster


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It's my girlfriend's skill i can't even give myself a interferon pen shot. I am quite phobic of needles.

I was reading publications regarding neutropenia and i now understand why my doc thinks i have more space with WBC count and why is it important not to reduce interferon dosage. Interesting fact that there no cases of serious bacterial infections in interferon treated patients with neutrophiles low as 0.5  (x 109/L), they just coppied those rules from chemotherapy guidances, but no real reseatch was made with hcv patients?

Tho again i talked with mate who went @ same time on therapy as me (GT1 tho), but he is being treated on infektology department (i am on hepatology tho), and they wanted to stop interferon injections when his WBC dropped to 2.8 (he bounced back luckily)? I guess each doc is different...i also have realised that my drop in weight contributed to WBC drop, so i am eating now more "unhealthy" food trying to get back some weight. Looking forward for next blood test/12th week PCR on Thursday, hope i will up neutrophiles at least back to 1.0, i really don't wanna loose this battle now that i am UND @ 8th week ;/

http://www.ccjm.org/content/71/Suppl_3/S17.full.pdf

http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_C/Neutropenia.pdf



__________________

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!
Zlikster


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Hi Anita can you post more info regarding your condition on the thread u have started: http://hepcfriends.activeboard.com/t53339173/new-to-forum/

Genotype 1a, liver F4, what is your viral load? What type of medicine will it be included as DAA in your, i presume, triple therapy? (Interferon+Ribavirin+Incivek?)

There are a lot of people on triple therapy on this forum (i am myself on dual therapy cause of my genotype), which can share their experience and tips regarding triple therapy (espec. regarding DAA intake)

Fight won't be easy, but since your liver is @ F4, it's good thing u have decided to fight it now!

best



-- Edited by Zlikster on Monday 15th of April 2013 12:45:56 AM

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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!
mallani


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Hi Zlikster,

Sorry about your sore butt. Hope your skill improved.

Karen, as a vegan, I understand why B12 injections may be useful. I read the article Jill posted some time back and asked my doc about B12. He said B12 is stored in the stellate cells of the liver, and cirrhotics may be B12 deficient. I actually had a blood B12 done and was high-normal, so haven't worried. There was an article in GUT about a small study of 96 patients who appeared to show better SVR figures with added B12. He said this hadn't been duplicated and was not widely accepted. However, extra B12 won't do any harm. It may be helpful in some types of anaemia, but has no effect on WBC levels. Cheers.



__________________

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
Zlikster


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hehe, it might be my gf "expertise" in administring injections more or the thing i am taking 2 vials of 500g at once...40min of butt pain ;s now it's ok...just had my, what could be, last interferon shot ;/ i can't belive day arrived i am feeling sorry it might be last interferon shot??? what have i become ;-D


oh yeah, since doc said i can go get OTC meds to help immune sys, i have bought (recommendation from friend who had lymph nodes cancer and opted for interferon therapy) Immunomax AHCC pills.

best!




__________________

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!
Cinnamon Girl


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Yes, that`s right, Karen, I remember posting an article about that a while ago...

http://hepcfriends.activeboard.com/t50089376/vitamin-b12-may-significantly-enhance-standard-hepatitis-c-t/

I must say I haven`t ever heard of B12 shots being used to increase WBC though. 

Poor Zlikster, what a pain in the bottom!  wink  Hope it eases up soon! 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Zlikster


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my lowest wbc was 2.1, but doc said 1.75 is lower limit for a 50% interferon reduction. 

are b12 injections this painful? gf just gave me one (in bottom), hurts a lot, 20mins passed and it still hurts. i guess substance is kinda oilish and hard to absorb in muscle, hence the persistant pain? 

i really aint happy round daily injections of this ;(



__________________

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!
Karen


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Hi Zlikster-You must have a sensitive bottom ("kidding"-hope you have a sense of humor)..Really, I have never heard of b-12 injections being painfully.  When I use to get them at my doctor..I got them in the bottom-The nurse told me never to bend over-best to lift up on your toes (on the side you are getting the injection)-that way the buttock muscle is more likely to relax instead of contract..since I now inject myself I put them in my thigh..no issues. You might want to request the almight thigh!

Hi Malcolm, For myself..I am vegan most the time and vegetarian the rest..does not hurt to have a little nudge of b-12 occasionally.  Also, shared by my doctor-in a recent study the addition of vitamin B12 for patients treating for Hep C produced a significant improvement to the response rate.  Overall, patients who received B12 supplementation gained sustained viral response more frequently than those who were treated with anti-virals alone. More importantly, the most striking effect of vitamin B12 supplementation occurred in HCV genotype 1.  Geno1, that is me!

 



-- Edited by Karen on Saturday 13th of April 2013 08:58:54 PM

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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Biggyb


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All i know is WBC was at 1.9. Its been low my whole time on treatment, but this was lowest.



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Zlikster


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Hi Bob, how low was your WBC and neutrophiles count when doc decided to put you on Neupogen shots?

cheers



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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!
Biggyb


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I was taking b-12 and my wbc continued to go down. Finally Dr put me on Neuprogen 2x wk. rather than lower my peg anymore. In fact he has me at 180 dose again.  But maybe it works for some people...



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Zlikster


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to be honest Malcolm, i think that too. If you ain't B12 deficent (and i guess few other minerals important for WBC production), i doubt that oversaturation with B12 can make a difference i nWBC production, but i guess it is a last resort attempt to raise WBC just a tad with less dangerous method than Nuepogen injection  (for which i need to go additional tests)? I guess i could do B12 (maybe Zinc, Selenium, Vitamin A) deficency test next time (kinda pricey)? i did Vitamin D 2 months ago, i was on 34 (22-48) so no deficency, but i am still taking Vit D daily as supplement.

i was taking B12 pills (2x500) for a month since i went with down neutrophiles to 1.2, next blood test it  was 0.7 ;/ i don't think B12 supplementation works in my case...i am worried since my basline pre tx neutrophiles level was low @ 1.9 (ref 2-7.8), then again i noticed doc wasn't scared that much, since total WBC is @ 2.3, still room to fall with it in general i guess.

if i was only @ 4th or 5th month of treatment, being @ 3rd kinda scares me to experiment with interferon dosage/skips ;/

best




__________________

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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Awesome news!! Congrats!!

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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!!!
Loopy Lisa


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Hey congratulations, good news! It will all be worth it! :D



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
mallani


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Hi guys,

I'm a bit confused. Why are you taking B12?  If patients have a normal diet, the Vitamin B12 and Folic acid levels should be normal.  In any case, a simple blood test will tell you if you're B12/folate deficient.  In patients with normal levels, I have never heard of using B12 supplements for neutrapenia or anaemia.  Does anyone have a reference?  Cheers.

 

 



__________________

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
Karen


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Terrific news!...Zlikster

I have been injecting B-12 for about a year (injected today)...You are right about cyanocobalamin vs methylcobalamin, methyl is better for you. Cyan must be converted into methyl by the body-the older you get the less you benefit.  My doctor prescribed methy but the only place I could get it was at a compound pharmacy....very, very expensive.



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Greg


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Excellent news, hang in there you CAN DO IT.

Congratulations,

Greg



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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
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
Freshhope


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I know what it feels like as I just got those words myself. Glorious, weepy, and mellow all at the same time :) Now we count down the weeks and pray that the healing work started in us will continue until the cure is complete.

Congratulations!



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41 yrs old. Type 1b, with cirrhosis in Abbott clinical trial. Undetectable since week 4 April 5, 2013.
JIme


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Those are the sweetest words we can hear.  Congratulations!

Keep moving forward.



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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

 

 

 

 

 
Zlikster


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thanks lucy, so it works on WBC? :) i guess you using cyanocobalamin instead methylcobalamin? i only could find cyanocobalamin 500mg vials (dirty cheap like 40c per vial!), apparently methylcobalamin is better absorbed (and more exp) but can't find it here ;/


Vern, wow on daily basis??? how do u administer em? i am really bad with needles ;-(



__________________

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!
12Step Guy


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I've been on B12 injections for at least two years. After each shot, my energy picks up a tad, then it slowly winds d o  w   n   !

 



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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.
lucy


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                                 NEUT          WBC

                 Feb 19,       1.6             3.5

                 Mar 1 ,        2.2             3.6

                 Mar 7,         1.9             3.4

                 Mar 14,       3.0             4.4

                 Mar 21,       2.5             5.1

I don't use Methylcobalamin. 

 

                 

           



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 1b, start triple treatment(incivek) on Feb 5, 2013.  UND@ 4,12,24 wks. EOT Aug 6, 2013
Zlikster


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hi lucy, have u noticed any neutrophile count changes w/o or w injections? i have been taking B12 pills for last 3 weeks, but wbc count was going down at same (if not faster) rate...

have you used Methylcobalamin?

i am off to try and buy this. thanks



__________________

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!
lucy


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I have been taking B12 since I start treatment

Zlikster, hope you are getting better soon after B12 injection

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 1b, start triple treatment(incivek) on Feb 5, 2013.  UND@ 4,12,24 wks. EOT Aug 6, 2013
Zlikster


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thanks Vern, Lucy

just got email from my doc...she said i can't get Neupogena without hematologist recommendation, it is a prescription only drug. She said to obtain asap Vit B12 1000mcg injections and inject em daily for 7 days and keep same dosage of interferon until next week. Meh, more injections! ;(

anyone had experience with B12 injections?

cheers!



__________________

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!
12Step Guy


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Congrats on climbing the first mountian. Pushing each other forward is part of the plan.

Vern

Thought for the day: An Ancient Chinese Proverb says...


"An invisible red thread connects those who are destined to meet. Regardless of the time, the place or the circumstances. The thread may stretch or tangle, but it will never break."

 



__________________

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.
lucy


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good news. Congrats

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 1b, start triple treatment(incivek) on Feb 5, 2013.  UND@ 4,12,24 wks. EOT Aug 6, 2013
Zlikster


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thanks all!

@Malcolm, well doc said thats last resort and my insurance won't cover it (i have to get it on my own) and she ain't happy to recommend it (apparently it has it's own side fx re bone marrow), other option she mentioned is unpleasnt daily im injections of vit B12. Anyways, i will get 1/3 lower dosage of interferon tomorrow and next 2-3 weeks, if the neutriphiles count goes even worse i think she will take me off pegintron ;( i really don't wanna fail/relapse now cause of my low WBC. I will do my best with supplements/nutrition if it fails i will try to obtain Neupogen on my own. I am not that sure that lower dosage of interferon will change anything. Lab technician said my doc might opt it to skip 1 injection or something like that...man i feel i am so close, i don't wanna hcv mutate resistance to peg cause of this ;(

best



__________________

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!
Matt Chris


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Hey Zlikster

Fantastic ! News , a life changing moment for sure.

You have come a long way, and your going to make the rest of the way.

Just keep your mind in control of your body the best you can, and get the Meds that can help.

Enjoy the moment it's a great feeling to savor.

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
BeingOral


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Totally Awesome. Praying for an increase in neutrophiles.
Peace,
Oral

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57yo, married 31yrs to BFF, blog: www.oralaur.blogspot.com

HCV in '74? Geno 1a, CC, w cirrhosis & h.hemochroma. Take Nadolol, Diuretics, Lactulose.
On transplant list at Georgetown: Started Triple (Incivek) 4/12..vl UND 5/20...Have Hope!
mallani


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Hi Zlikster,

Great news! Can you get some Neupogen for your WBC?  Better than dropping the Peg. Cheers.



__________________

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
lucy


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I use cyanocobalamin. My RA asked me to buy this one.



-- Edited by lucy on Friday 12th of April 2013 08:04:30 PM



-- Edited by lucy on Friday 12th of April 2013 08:22:14 PM

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 1b, start triple treatment(incivek) on Feb 5, 2013.  UND@ 4,12,24 wks. EOT Aug 6, 2013
Biggyb


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Very good news.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Caryn


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YEA!!!! Excellent news - very happy to hear it!!!!!  



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
Zlikster


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just got 8th week PCR and it's UND! i was on brink of crying when i got damn result (was 1 week late)...

bad news is, my neutrophiles are down to 0.7 ;( i will desepratly try to raise em in next 2 weeks with interferon dosage lowered from 120 to 100mcg (tho i would like to stay @ 120mcg)...i really don't wanna stop treatment now that i am halfway there ;/

anyways, i wouldn't make it this far without you folks supporting me

thanks and fight on!



__________________

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!
Cinnamon Girl


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Such great news at last, Zlikster, so happy for you, congrats!!!  biggrin

The interferon dose reduction should help with your neutrophil count, best of luck, keep going!!



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
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