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Post Info TOPIC: new drug tegobuvir+gs-9256+standart theraphy just started !


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RE: new drug tegobuvir+gs-9256+standart theraphy just started !
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Hi Everyone,
I had sent this post almost a year ago when I started the tx. Now I have done I have completed 48 weeks tx. Im on 2nd week of post treatment. Yes I felt like I am feeling like walking on the moon without gravity. Feeling great already but still side effects pops up during the day but it is not very mild. Nausua and my seasickness headache gone already. still itching and my moods swings is on but I am more friendly to people : ).

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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Thank you very much Isis, I had visited couple specialists before i started to the TX. And they told me that it would be a good option for me to enroll a study. Because I havent had an insurance. Researchers follows me very closely like 2 times a month they do all blood test and scans. But in the other hands as you told me my friend sometimes im thinking that should i really trust them or not. anyway im almost there. I see that you are on tx. How do you feel so far ?



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Hi Anatolya: 

I read your story from the beginning of this thread and you have indeed fought a valiant fight my friend.  I am wondering if you might seek the opinion of a doctor who is not associated with the research team.  One who specializes in the tx of hep c.  (I know a treatment is not a medical specialty but you know what I mean--either a gastro or a liver specialist who actively treats hep c patients.)

Seems to me that you have been undet. for some time, and perhaps you are no longer tx compliant anyway, so maybe there is a better option for you than continuing as is.  I expect you feel a great loyalty to the researchers-- but hey I am more concerned about you than them--talk to a doc who feels the same.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Hi Friends, Me again. back here after long time. I guess its been 5 months maybe.

First of all I am still undetectable. Thank to God. And worst part I am still on tx. After I completed 24. week I was expecting that I am off the tx. but researchers decided to keep me on tx for 48 weeks. No im on week 36. 

Now I am on 2 times 2 riba a day and 1 injection a week. I havent had serious side effects so far except my depression and anxiety has started 2 months ago. and couple dermatitis problem inside and outter side of my ears. and a lots of legs itching. Ill be done in the middle of March. 

 

by the way I have been keep missing my dose, sometimes I forget to take my pills on time and i skip it, sometimes I forget all day dose. Im tired to being on tx maybe. 

I hope everyone here doing well. just hang in there. stay positive and never watch sad news and movies including songs. 

HUGS



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Im on 10th shot. scalp sensitivity completely gone. I cn brush my hair everyday. but just in case I am still wash my hair with organic nioxin shampoo once a week.
skin sensitivity is still on issue. shortly I hate sun. wish i can live somewhere it is all night time
anatolya wrote:

I had my 7th injection today. I can say I don't have seriously side effects so far. I have couple few little complaints, if i make a list :

scalp sensitivity: it doesn't itching. But it is like a every single of my hair root is very sensetive, a little pulling of my hair sounds like a huge pain. So I am afraid to go to hair salon. its painful. by the way I brush my hair once a week.

skin sensitivity: the sun bothers me. I can feel my skin irritate under the sun. And that is make me nervous. I wear long sleeve cotton dresses and always wear hat on me with a huge sun glasses. Im look like a very celebrity.

And ofcourse I am getting tired quickly but as I was feeling very tired pre-treatement also. The diffirences between tiredness of pre-tx and on tx is now after a short rest my body quickly renew its energy. before treatment I needed a much more time to renew my energy to do my routines.

I am going to my 7th visit at reseach hospital and I will learn my blood test result on wednesday. I will write here the result. hopefully I will learn my sensitive RNA test result.

 

I wish you a wonderful week.

 


 



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Hey Friends,

I got my 8th injection and 8 week visit. And here are my blood result at week 8 of treatment.

A little anemia show up, I knew that from my yellowish face. till next week if i have still anemia, they will reduce the ribavirin.

Taking Vitamin D3 on pending because they want to check my vitamin D level in my body. they dont want me take more than i need.

and good news I am still undetectable it is >15 vrl load.

and they told me that I may stop to take the treatment at week 16. If I still undetectable till end of the week 16. because I response to the treatment early.

thats all for now.

best wishes all !



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Thanks Captain, Im good so far. as you said side effects are definately managable and I don't have any complaint but few small things like itchy nose.

And Moocow and Captian, both you are very right I should tell him. I mean I will tell him eventually. 

And I told some of my friends about that  I have kind of liver problem and Im on kind of light chemothreapy. I try to tell them it is not very easy sometimes. but they never ever understand what I am dealing with. they still ask me why didint you call me back, why didint you show up at the party etc etc. I am thinking to give a injection to myself in front their eyes and after I want them see me how I feel.



-- Edited by anatolya on Wednesday 29th of June 2011 03:51:32 AM



-- Edited by anatolya on Wednesday 29th of June 2011 04:46:29 AM

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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Hi, Ana:

Glad treatment is going well and your sx have been manageable. I can't imagine having to deal with a room full of kindergarten age kids while going through this, sometimes, my 10 year-old daughter drives me nuts all by herself!

I know you didn't ask for advice on telling your boyfriend, but I just want to point out that the treatment can be challenging for those around us who know what is going on; for someone to not know would be even more confusing, as they don't know to expect some mood changes and anxieties as you go through treatment.

I would tell him. If he is worth keeping, you won't have to worry about losing him. And if you lose him, he wasn't worth keeping in the first place.

Regards,

CO



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Genome 1A, diagnosed in 2010, probably from blood transfusion in 1985. VL 1.5-7.0  Biopsy 2/2    Began clinical trial for Telaprevir 5/2011. Week 4 - UND and liver enzymes in  normal range. Week 12 UND.  Hope to finish tx 10-26-11



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RE: new drug tegobuvir+gs-9256+standart therapy started.
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I had my 7th injection today. I can say I don't have seriously side effects so far. I have couple few little complaints, if i make a list :

scalp sensitivity: it doesn't itching. But it is like a every single of my hair root is very sensetive, a little pulling of my hair sounds like a huge pain. So I am afraid to go to hair salon. its painful. by the way I brush my hair once a week.

skin sensitivity: the sun bothers me. I can feel my skin irritate under the sun. And that is make me nervous. I wear long sleeve cotton dresses and always wear hat on me with a huge sun glasses. Im look like a very celebrity.

And ofcourse I am getting tired quickly but as I was feeling very tired pre-treatement also. The diffirences between tiredness of pre-tx and on tx is now after a short rest my body quickly renew its energy. before treatment I needed a much more time to renew my energy to do my routines.

I am going to my 7th visit at reseach hospital and I will learn my blood test result on wednesday. I will write here the result. hopefully I will learn my sensitive RNA test result.

 

I wish you a wonderful week.

 



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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RE: new drug tegobuvir+gs-9256+standart theraphy just started !
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Given you had a bad experience when you told a previous boyfriend, I can see your caution, however- you won't be able to hide this for long!

I think you need to tell your significant other- how would you feel if the shoe was on the other foot, so to speak?

If this dude really, really cares about you, your relationship with strengthen. If not, it wasn't meant to be anyway. It's really that simple.

If someone truly LOVES you, they don't walk away from you when you are sick. I think you also need to inform your family, then again- that is your choice. You are an adult and certainly can determine what you want your family to know and not know.

As for your boyfriend, I think I'd just sit him down and clue him in.



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Hey Moocow, 

thank you for supporting. Actually when I learnt first time I had hep C I had a boyfriend during that time, also he was a doctor, after I told him he graduadly walk away from me. in the end he left me. All this happen in Turkey, actually I'm Turkish. And most of people think that it is sexual related diseas like HIV.  And I didin't tell my family already they are away from me, I live in NY. And if I tell them they will be so sad,panic and they cannot able to come here often and it would be very dramatic than now. And I know my mom she will keep calling me everyday : )

now my boyfriend he is very nice person, but I 'm not very sure if he find out he will be the same person to me. actually I didint want to have a relationship before tx. sometimes he pushing me so hard, he is very active and homeoffice job, so he is free all the time. sometimes I wanna scream that I have hep c and on tx and leave me alone : ) 

 



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Hi Ana, I'm just curious and it is certainly none of my business, but is there some reason you are hiding this life changing event from your family and others that love you?

You have nothing to be ashamed of, no more shame than someone that has developed cancer or another debilitative disease.

It is good to hear that the sides aren't too extreme, but you still should take it easy, drink plenty of water and eat in a healthy manner (if food isn't becoming adverse).

I am just a different animal, no doubt contracted the disease due to risky behavior as a youth (like shooting dope), have numerous tatoos (could have contracted it that way, too!) and I just feel that telling people close to you is important to gain the emotional support you need in real time.

Yes, everyone here is on your side, for sure- but, don't you think your boyfriend wants to know what you are enduring?

Heck, I told everyone- I didn't care. Treatment was a horrible vacation from the normal routine of life and I wanted everyone to jump on my miserable bandwagon, LOL!!!!



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Hi Rose,

before I started the treatment I was more stressful and depressive than now. Because I was sooo worried about what it is going to happen to me when I started the treatment, speacially docs gave me a paperof a long list of side effects. Plus nobody around me, including my family and my boyfriend they don't know I have Hepatitis C, so nobody knows that I am on treatment. So go figure how I was worrying that how can I handle the side effects without someone notice that I have something wrong.

it might be funny but I will tell you what I did couple days before I start tx. I preprared myself by talking with my body- kind a self meditation- I told to my body like a someone sit front of me : " my dear body, be ready that something going to change with you, you will have some shots and drugs and they will effect you. please be ready and prepare yourself, you are strong and both we want to get rid off the virus. so help me, to knock down the virus you and me and drugs we will be work like a team and we will win this war." 

And I started the treatment and believe me I handled it easily. first 2 or 3 weeks you may feel some headache, pain but they are comes and goes in a day and I never had a pain killer pills so far. I am on 6th injection and I feel much better. I have mild a few side effects like scalp sensivity, pale look(make up helps). As I said nobody notice that I am on a treatment or I am look like sick so far.

i wish you the best. 

Ana



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Hi Rose, That's my Mums and my Daughters name! Welcome to this wonderful group of souls, when you feel down or confused someone, somewhere, has an answer.

Yes, it's OK to be scared, anyone who says other wise may be telling Porkies, or superhuman.

I'm on week 28 of 48 (For Now) everything is subject to change, ask anyone here.

Good Luck and Good Health.

 

Steve.



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Greetings to Ana and Rose. 

I don't know if I introduced myself to Ana yet.  I have read your post and am hoping for the best for you.  I am fairly new here too. I was hoping to start tx in June, but haven't gotten insurance approval yet.  Now my DR is going on vacation and won't be back until July 8! So it may be almost August before I start!  I am so encouraged by reading all the post here. 

Thank you for writing how you feel.  It gives me encouragment that, yes it may be harder for some than others, but with the help of everyone here, it can be done.

Becca



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Diagnosed Dec. 2008. Genotype 1b, enlarged liver.  Started triple tx with Incivek on August 12, 2011.



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Hi Rose

Its only human to be scared but I can say, for me anyhow (I am in my 7th week of TX) that it isnt as bad as you imagine right now. Good luck for august, sending best wishes your way



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Genotype 3a Started tx 11 May 2011 for 24 weeks. With scarring. VL before tx= 4 million.. UND@4 weeks. UND@12 



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Hi and welcome to the forum Rose. Don't be afraid of the treatment, it can be a challenge at times but your body adapts to the drugs somewhat. Everyone is different and my side effects have not been as bad as some folks. Take care, Randy

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"Ah but I was so much older then, I'm younger than that now."  Bob Dylan



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Hi, name is Rose I hope to start Aug 2011.. Getting scared but will keep reading about your treatment....



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Thank you Moocow, I have seen the cardialogy and they put me in nuclear stress test. They said the pressure is just because of stress and neurotic. My cardio test gone well. Guess anemia havent started yet. I am in just 4th week. but thank you so much for information. they will check me every 2 week.
Moocow wrote:

Hi there Anatolya- the symptoms you describe sound like the anemia that the interferon will cause, as in a drop in RBC's.

I would think they are watching your blood counts as you are enduring treatment- IF you get to the point that breathing becomes difficult, do get in touch with your doctor or nurse, they might want to run another CBC- there are rescue drugs if you get too low on those WBC's or RBC's, to help you continue treatment.

Don't wait just because you believe that the other sides are tolerable. Getting short of breath or your chest being in a state of discomfort needs to be watched- don't wait if they worsen. :^)


 



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Thank you very much all, I am surprised that I see many welcome messages here. I feel better. I had my forth injection, and I do not have any side effects ! all my complains at first 2 weeks gone all of a sudden. I am just wondering that is side effects starts after one month or two months later ?
I wish you all my best wishes and very nice to meet you all !

Ana

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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Hi there Anatolya- the symptoms you describe sound like the anemia that the interferon will cause, as in a drop in RBC's.

I would think they are watching your blood counts as you are enduring treatment- IF you get to the point that breathing becomes difficult, do get in touch with your doctor or nurse, they might want to run another CBC- there are rescue drugs if you get too low on those WBC's or RBC's, to help you continue treatment.

Don't wait just because you believe that the other sides are tolerable. Getting short of breath or your chest being in a state of discomfort needs to be watched- don't wait if they worsen. :^)



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PJ


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Welcome to you Anatolya and best of luck with your treatment!

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Diagnosed in 2006. Probably infected in the late 70s or early 80s. Genotype 1B. Starting TX on 5/5/11 with the SOC and Teleprevir. 



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Hi Anatolya and welcome to the forum. Sounds like you are not doing too bad. I'm in week 16 and have stayed working too, but we all seem to get hit a little different by side effects (sx). Mine have not been as bad as I expected and hopefully yours will continue to be relatively smooth.
I really don't have pain around my heart but I think it was about week four or five that I started to notice the fatigue and thus, my ol' heart was a pumping a lot harder doing routine tasks. Prob worth a mention to your doc.
Good luck with Fridays shot and if ya have any questions about it, this forum is the place to ask. Also, a fun thing one of our members started is a thread called the 'Friday Night Dart Club' (FNDC) in the 'on treatment' section of home page. It's an imaginary (but really real) place somewhere between cyberspace and our own mind that we can gather to wish each other a good shot or otherwise touch base on a multitude of subjects and.... oh, you'll see.

Okay, take care,
Randy



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Hi Anatolya,

A huge welcome from me too..

Best of luck to you smile.gif



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Genotype 3a Started tx 11 May 2011 for 24 weeks. With scarring. VL before tx= 4 million.. UND@4 weeks. UND@12 



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Hi Anayolya,

Just wanted to say welcome to the forum and that I'm pleased that you have started treatment and wish you all the very best with your journey to better health.

Good luck,
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"

ty


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Hi Anayolya,

     Welcome to the forum from me as well.  It's great that you have started treatment and are on your way killing those viruses.  Don't worry about giving yourself the shot, after the first one you will wonder what that concern was all about.  Take care, tysmile



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Genotype 2 - 24 week Tx - Start 10-8-2010 - 4 week PCR test UND, 12 week PCR test UND, 24 week PCR UND,  SVR Oct. 11 



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Hi there & a warm welcome from me too.

Nice to meet you & if you have any problems or worries just ask away as you've come to the right place.

Lesley x



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Hi there Anatolya, we`re always pleased to greet new members to the forum, so a warm welcome to you.

You`re doing really well then with the new drug, that`s great to hear.  It`s amazing that after 4 wks you`re feeling more energetic than before treatment!  Fantastic!

I finished treatment in March after 24 wks and didn`t get any discomfort around my chest or heart during that time, I don`t know if anyone else here has had that.  Hope your 2nd test comes out clear.

All the best to you, love from Jill xx

ps - for general info ...  http://www.hepctrust.org.uk/news/2011/April/Tegobuvir+Works+Well+in+Triple+and+Quad+Regimens+for+HCV 

 



-- Edited by Cinnamon Girl on Tuesday 24th of May 2011 05:38:07 PM

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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.

 

 



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hi welcome to the forum smile you sound like your just getting on with it and your heads in a good place thats fab!

Yes i always get worn out very quickly but you do learn to cope and just listen to what your body is telling you

all the best look forward to getting to know you

kaz xxx



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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 :))))



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hi friends, Im 38, female,diagnosed in 2008, have been contracted hepc since 1995. I had my first shot 3 weeks ago. I will do my 4th shot to myself this friday. How i feel so far, actually i havent much side effects yet. first shot i felt mayalgia, muscle pain it was so awesome and intense but it wasnt so so bad, even i was out for a dinner with friends. First week i felt im kind a slow but happy. Second week i felt slow motioness and mayalgia completely gone, i felt headache. But it wasnt so bad even i didint get any pain killer. Third week i felt headache and rash in my rectum. But it wasnt so so bad i didint take any painkiller. Forth week, headache completely gone. I have only complain is i am feeling discomfortablity around my chest, my cardio ekg is all normal but just in case i will go for stress cardio nucleer test. Generally i can say i am much much feel energetic than pre treatment. before treatment i was even able to go for shopping or long activities. Im working full time, still im working im working at kindergarten with kids all day, very tiring job but im doing well so far. Even im not getting tired or feel worn out quickly like before. Only i am feeling discomfort and pressure around my heart. if it will away i feel better anyone have same problem ? By the way, my viral load was 64.700, after first injection week it is 64.500. inner, i was a bit yucky but i was ok. and after next day i felt all my movement

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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.
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