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Post Info TOPIC: Hi All
GodsGrl


Senior Member

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RE: Hi All
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Wow I'm shocked, not good news. But thankfully many new and better treatment options are just down the turn pike. Hope you feel better soon!



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Geno Type 3A  Double TX 1-30-13 2 1/2 week labs VL >43 Lab error on 12 week VL no result

 
Cinnamon Girl


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I`m so sorry it hasn`t worked out for you this time, Anthony.   The new interferon-free treatments coming along will most certainly be much more suitable for you.  And maybe you could look into getting onto a clinical trial once you`ve recovered.  Look after yourself and take it easy for a while till you feel better.  Keep in touch...your time will come!   smile



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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.

 

 
12Step Guy


Senior Member

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Hey Man, the party is just getting started. Have you told us much or know much about where your liver disease is at ? What stage did the biopsy rate you? Are your ultrasounds showing anything? I realize that it must feel like you're driving a load of dynamite down a washed out mountain road. Others have gone before you and made it down safely. With all the spare body part swapping going on, we all might live longer then we want to.



__________________

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.
ttikhio


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I got the results from the 4 week blood test on Wednesday.

It turns out that it has actually made my Hep c worse. My count is now double what it was when I started and as such I have had to stop the program. I have been very ill since stopping, way worse that when I was taking the pills

I guess I can only look to the flying spaghetti monster for assistance now.... what will be will be.

I'm not really worried, I don't worry about what I cant change... when the party is over, its over!!!

Take care all. 



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Dillo


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ttikhio wrote:

Thanks to everyone for the info.

I must admit after researching the side effects Im not sure I want to do this...

 Not everyone gets the same side effects. I put off treatment a couple of years after reading of the side effects.

Mine have been remarkably light from what I expected, what I read about, and how bad it looked.  No picnic but as my MD told me...."I hear cirrhosis of the liver or cancer is a LOT worse than any side effect."

Good luck.



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GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

ttikhio


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I went for a run.. it wasn't easy but it was fun. I had to give up after 1.5 km as I was feeling off colour, the walk home was nice though.

I seemed to have recovered better than I thought I would... I might have another go today if I don't get too dizzy...

Got to put up a fight against this enemy!!!



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marktrux


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My Dr told me to exercise if I felt able. It's great for many of the sides but take it easy, your body will tell you when it's had enough. Congrats on the low sides, they affect everyone differently and hopefully you're one of the lucky ones that aren't too affected by them.



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KCCO

 

 
ttikhio


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Hello again everyone.

Ive just had my 4th shot this morning and things are going well.

I must admit that the side effects don't appear to be as bad as I was lead to believe..... this leads me to wonder if this is just the tip of the ice berg and if the real game is yet to really start. I was going to try for a short run this coming Wednesday, im sure there will be those who would argue against this but I really want to have a go... what's the worst that can happen???

Anyway what will be will be.... I would like any input from members advising what I might have to look forward to in the next 2 months... i.e. .... does it get worse than this?????



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Dillo


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H Anthony,

I have been on the same triple therapy starting on my 14th week now. My first 4 weeks on the telaprevir weren't too bad. As even now it seems like one injection of the Pegasys out of each 4 brings a little different reaction.

Keep up the water, moisturize and with the 20 gms of fat for the telaprevir. Worse problem they say is the possible rash you could develop. While I have had some kind of rash through treatment  I didn't develop a more radical one until the 10th through the 12 weeks. Some people have talked about getting it sooner. It began with more pronounced red purplish bumps that would gather in string similar to a spiders legs. They say that as the bumps grow together you have the beginnings of the bad one. Make sure you get referred to a dermatologist soon if you get something similar so you can get it taken care of of they could take you off the meds. . Some people don't get it.

I got mine under control but it persisted until I was through with the telaprevir.

Google telaprevir rash.

It has gotten harder for me as I go along good days and bad days, but it is doable.

Check in and let us know your progress.



-- Edited by Dillo on Monday 13th of May 2013 05:21:24 AM

__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

12Step Guy


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For me weeks 6-12 were when the Incivek really started to make its presence known. I didn't need lab work to tell me my hemo was low. Good days and bad. Doing too much wore me out not just the next day but for the next 2-3 days. Usually it was worth it, sometimes I should have known better.

Vern

Fight the good fight



-- Edited by 12Step Guy on Monday 13th of May 2013 12:41:27 AM

__________________

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.
Bouba


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Hi Anthony,

Please carefully read this before you start.

http://www.hepatitis.va.gov/pdf/telaprevir-workbook.pdf

It may answer almost all your questions.

Good luck!

 



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58 yo male, HCV since 1981. Gen 1B (IL28B, CT). Diagnosed 1999,  VL before tx 100'000. Biopsy A2, F3 fibrosis. Naive, SOT (with Incivek) Oct 26, 2012. UND @ week 4, 12, 18, 24, UND 12 and 24 weeks post-RX
ttikhio


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Hi Niel,

 

Thanks for the advice. I retired in my early 40s so Monday is good for me... is there a good day????

Im going to get a flu shot today and im planning to start Monday week.



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Neil_Canuck


Senior Member

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Hi and welcome !!

You stated that you were going to start on Monday. If you work that's not really a

wise idea. You might have noticed our "Friday night dart club thread". Dr.s recommend

Friday as the best day to inject so you have the next 2 days to experience the worst of the side effects.

For me, I'm usually back to normal come Monday morning. 



__________________

58 yrs, cirrhotic, Genotype 1b 48 weeks Victrelis triple, SOT 7/13/12 victrelis started week 5. Starting VL 4,000,000  Wk 8 33 copies  Wk 24 UND, EOT UND 6 months post Tx DET. The battle goes on.
JoAnneh


Guru

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Welcome to the forum.
I took Tylenol and Benadryl before
My first few shots to ease side effects.

This forum has been invaluable support
And knowledge.
We are here to help in any way!
Time to beat the virus.
I am on my 48 week of treatment
And was on Invicek for first three months.
Thankful for a chance to beat Hep C




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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!
ttikhio


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Hi Matt,

 

Just home from the chemist with all the gear.

I will have to go and look at filling in my "stats" later.

I am 48 today, I have type 1a, my v/load is low... only around 300k. I am very fatigued and I get quite severe stomach pain. I dont drink or smoke.

Not much more to say really.



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Matt Chris


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Hello Anthony and welcome to everything HCV

Its very normal to question whether the treatment is right for you.

There are a lot of factors to consider whether or not you go on treatment now or wait until there is a better option.

The condition of your health, age and the monetary consideration all can be factors.

It would be very helpful if we new your basic stats.

You notice most forum members list their age, Geno type, whether their cirrhotic, viral load, AST, ALT and other various liver health factors.

It's likely that your doctor has allready taken these things into his recommendation.

Depending which country you are from I would ask your doctor if you have the health to wait for the newer all oral treatments.

Anyway you decide the forum will be an invaluable resourse and support for all your questions and concerns.

Matt



__________________

"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! 
ttikhio


Member

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Thanks to everyone for the info.

I must admit after researching the side effects Im not sure I want to do this...



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mallani


Guru

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Hi Anthony and welcome to the Forum.

Your drugs are Ribavirin, Incivek (telaprevir) and Peginterferon (injection once a week). Your doc will tell you but it's essential to take the Incivek with at least 20 gms. of fat, every 7-9 hours. The Ribavirin is twice daily. Let us know how you get on as we have many Forum members on the same drugs. Good luck.



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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
Biggyb


Guru

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Peg is the shot, 1x week, Ribivirin you take 2x day, not sure of telapervir as i am on Victrelis.



__________________

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~
Cinnamon Girl


Guru

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Hi Anthony, welcome to the forum!  We all feel a bit nervous before starting treatment, it`s quite understandable, and once you get started it will probably be quite a relief.  Could you tell us a bit more about which treatment combo you`ll be taking, that will help us give you the right advice. 

Best of luck, you`ve found a very supportive group here!  smile  ~ Jill



__________________

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.

 

 
Loopy Lisa


Guru

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Posts: 895
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Hi,

There are many people on here that are currently on treatment (I'm not yet). If you tell which genotype you are and treatment you are taking, the right people can give you advice. Anyway, good luck with slaying the beast!



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Biggyb


Guru

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Posts: 820
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Welcome Anthony. What drugs? Use search box above for loads of info.



__________________

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~
ttikhio


Member

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Posts: 8
Date:
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I am off to pick up the drugs today. I must say I am somewhat apprehensive.

I think I will start on Monday week... any advice would be appreciated.



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ttikhio


Member

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I think its type 1a

I have to admit I havent really paid much attention to it... I guess I will find out today. I think the drugs are... in no particular order... peginterferon alfa 2a 40KD + ribavirin, telapervir ... not sure of the other.

I believe I have to inject myself once a week and take 2 types of pills 3 times a day.

 

Fun times ahead!!!!



-- Edited by ttikhio on Thursday 11th of April 2013 12:53:02 AM

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