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Post Info TOPIC: Hello, I am a new member.
dustbear


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RE: Hello, I am a new member.
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To Mallani:  I did question even being on Victrelis but they put me on anyways; higher success rates is what I was told.  My VL is tested monthly and so far it's still at zero!

To Cinnamon Girl:  I always see the silver lining in a bad scenario. My sisters and I are much closer, I lost the 10 pounds I've been struggling with, I eat what I want without guilt, I don't have the energy to exercise (I need a break anyways) and I do pretty much what I want! 

I did report my adverse reaction to the makers of Victrelis and Health Canada.

It is so important to have a knowledgeable hepatologist that supports you. Mine has been a life saver for me!

In my travels so far, the doctors and the pharmacists don't understand the tx or many of the sx, and when I ended up in emergency no one knew what to do with me!

After 6 months, I'm managing pretty well.  I ask lots of questions and question everything.

Take notes (re: brain fog) and report all sx to your specialist; do not ignore them is my tip. 



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
Kellie


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Hi Dustbear, Welcome! I couldn't do this treatment w/o this group. I'm feeling a new awareness of the world around me too as my body is healing. Best, Kel



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Dillo


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Hope your doing ok on the long Peg/Riba tx dustbear. Your low inital VL and rapid response should help make it work for you hopefully even without the Vic. Thats a log tx though I have lots of respect for all who do the 48.

Happy trails on it!



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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.

mallani


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Hi Dustbear,

If you were undetected after just 4 weeks (ie after the leadin with Peg. and Riba.), you don't need the Victrelis as you are Interferon sensitive. Unfortunately you need to to 48 weeks, but your chances of SVR are high. I haven't heard of such a reaction to Victrelis, but I'm glad you've recovered and well on your way. Let us know your 12 week VL. 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
Cinnamon Girl


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Hi Dustbear, thanks for introducing yourself and giving us a few more details about yourself and your Hep C history.  

I haven`t come across anyone who`s had that sort of reaction to victrelis either, but it must have been a very scary experience for you, and you`re doing well to carry on with your treatment.  Doing a long stretch of 48 weeks is certainly a challenge for anyone, but at least without the victrelis you are spared the extra side effects as it does tend to lead to more problems with anemia in some people. 

The mental and emotional side effects can be a difficult aspect of treatment, I can certainly relate to that, and having this period of time out from working will take a lot of pressure off you and give you space for yourself.  Take care and be kind to yourself, and do whatever you need to do to stay relaxed and get through each day, you have every reason to feel optimistic after such a good early response!

All the best of luck, we`re here for you!  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.

 

 
dustbear


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I am new to this forum, but not to this treatment.  I made my first post in the Rant and Rave section last week see Ignorant Friends.

 

I have Hep C, genotype 1A.  I just found out in 2011, and I know I've had it since about 1981 when I used needles briefly for 6 months (not heroin). I have lived symptom free for over 30 years and it was a routine blood test that found my liver enzymes were higher than normal.  A biopsy put my liver at grade 2 and stage 2.  I am blessed to be a rapid responder (virus free) at 4 weeks, and I had only 288,000 viral count when I began treatment. 

 

I am 26 weeks into a 48 week treatment on Interferon/Ribavirin.  I would have been done now but my body rejected Victrelis after 30 days of taking the new drug.  I ended up in the hospital for 3 days and was taken off Victrelis.  I awoke after having brain seizures with a new perspective on my life.

 

I dont want to scare anyone with the Victrelis episode but its my experience. My hepatologist says Im the first patient of his to react this badly. I will gladly provide details if you PM me. 

 

I am normally an outgoing happy person, but this tx has changed me on a very different level.  I expected some physical side effects, but the mental ones are a challenge.

I quit smoking recently, and have found a new awareness in myself and in the world around me, to put it mildly. 

I am enjoying this time off work to take care of myself and heal physically, emotionally and spiritually.

 



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
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