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Hep C Discussion Forum -> Post Treatment -> need experiences of post tx'rs clear please
Post Info TOPIC: need experiences of post tx'rs clear please
missycat


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need experiences of post tx'rs clear please
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oh im sorry you had such a awful time. it really does go to show it depends on the person.

welcome from me and as jill says there be few more along to answer your questions

take it easy

kaz xxx

 



-- Edited by missycat on Saturday 4th of June 2011 10:18:29 PM

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Lift the hearts of those around you, share the goal that's in your sight. Keep strong, if i can do it anyone can! tx finished virus free :))))
Cinnamon Girl


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Hi Gawain, and a warm welcome to the forum.  Sorry to hear what you`ve been through, it sounds like a nightmare.  We have a couple of people on this forum who have been left with health problems post- treatment.

I don`t know whether you`re aware of it but trials of new medications are now getting underway, which should make things easier and faster.  As far as I`m aware the new meds are added to the current regime of Interferon and Ribavirin, and are aimed at people with genotype 1.

Thanks for the Tai-Chi tip, I`ve heard people mention it before.

No doubt other forum members will chip in with more advice and info.

All the best to you, Jill xxx



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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.

 

 
Gawain


Newbie

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Hi,

I underwent two rounds of combination therapy from 2002 to 2004.  My doctor terminated the second round because he panicked. He said he was afraid I would drop dead in my tracks.

Based on my experience, I will never restart treatment if it includes ribovarin.  During treatment I looked and felt like walking death.

A few months after treatment I went back to work refurbishing a house, and had a massive esophageal bleed.

On balance I believe that I would have been better off had I never started treatment.  I used to be a Sierra trek leader; now I am disabled with many health issues.  I plan to keep going as best I can.  I don't intend to undergo any more treatment attempts unless a completely new one comes along with far fewer side effects.

If you need help recovering from treatment, I strongly reccomend Tai-Chi.  Try to find a teacher that is well rounded in martial arts.

Best of luck



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Hep C since 1969-70. Diagnosed 2001, genotype 1B. Two rounds combo therapy failed. Massive bleed 2004. TIPS installed. Liver transplant candidate.
Moocow


Guru

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I really never did answer the initial question. Steff has done a much better job in answering, like her- because of age- I'm still tired more than I want to be, I have joint and connective tissue problems that have been occurring before I was diagnosed and post tx, are not getting better- there is degeneration. But, age is a factor.

Unlike Steff, my immune system is in really good shape, better than ever. I've not had a flu shot in 2 years and rarely come down with "bugs" and if I do, I get over them fairly quickly. I sure don't get as dog sick as I used to before treatment.

I forget everything. My brain/cognizance took a huge hit. And where were we????



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greenqueen


Guru

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Hi Wil,

In answer to your question about whether people who clear feel better post-tx, some do and some don't. There are a couple of post treatment survey results in this section.

http://hepcfriends.activeboard.com/t39851710/update-on-hep-c-trust-post-treatment-survey/

http://hepcfriends.activeboard.com/t35666199/recovery-from-hepatitis-c-treatments/

Have a chat with your specialist about your concerns and ask for honest answers. Ultimately, it has to be your decision.

Many people are told that they will feel great about a month after finishing tx, which can cause problems as recovery time varies so widely. Age seems to play a factor with younger ones bouncing back fairly quickly.The new drugs do offer a much greater chance of clearing the virus and there are people here who have felt much better after achieving SVR. Everything carries a risk.

As someone who cleared in 2006, I actually feel a lot worse, have CFS, joint problems and an impaired immune system. However, as my liver damage was already in the "moderate" range, it could have progressed to cirrhosis. This is not meant to put anyone off treating, but is my own personal experience.

Love Steff xx

 

 

 



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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
Moocow


Guru

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I would certainly go for retreating with a protease/polymerase inhibitor added in. You'll clear- much better chances with the new drugs getting ready to be released.



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Pillage before you burn.
wilburfierce


Newbie

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I completed 24 weeks per tx plan for type 2 showed clear at  12 weeks but virus came back after tx. Drs reccommended waiting untill new tx became available. No scarring , slightly elevated enzymes, just a lot of depression and fatigue. I just havent heard a lot of post tx'ers say they feel better clear post tx. Really want to get some response / feedback here.

 

thanks ,

 

wil



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Cinnamon Girl


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Hi Wil, I am so sorry to hear you had such a bad experience and are still feeling dreadful.  I`m only a couple of months post treatment but there are others on this forum who are further along.

I should think it`s well worth considering retreating.  Did you finish the course the first time round?  And have you discussed retreating with your consultant or specialist?   Sorry about the questions but just trying to get a clearer picture.

All the best to you, Jill xx



__________________

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.

 

 
wilburfierce


Newbie

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Posts: 2
Date:
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I did peg/rib 24 weeks 6 yrs ago but did not clear, (G-2). I seemed to feel like hell 6 months post tx. Am considering retreat w/added telaprevir. I'd like to hear from as many clear post tx'es as to how you feel 6 mos a year + out. I can't see going thru this again if I may never feel better. Please reply.

hopelessly,

 

wil

 

thanks,

 

wil



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