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Hep C Discussion Forum -> Post Treatment -> New to forum. Looking for post treatment words of wisodm!
Post Info TOPIC: New to forum. Looking for post treatment words of wisodm!
Tig


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RE: New to forum. Looking for post treatment words of wisodm!
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Hey Hepcat, you're right on the money! We have had quite the graduating class recently. It's going to be interesting to watch the successes that come our way over the next 6 months. Whomever it is, whether it's you or a friend, we're here to share your happiness and provide all the support possible during these next several months!! A BIG WOOT is coming your way!

Best, Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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hepcat60


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I also finished last week.  I am sure recovery will be different for each of us.  But like you I am still very fatigued and have no wind.  I hit 30 balls today and was so tired I felt sick.  Bottom line is you can't rush it and need to let your body tell keep you informed.  

 

Off topic:  It sounds like we have had a large graduating class this month!  Good luck and a speedy recovery to all.



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Hep C 1a since probably 1981.  Incivek, riba and interferon-48 weeks.  UND at weeks 2-4-6-8-10-12-16-20-24.  Previously Interferon alone for 6 months non-responder.  SVR 48 weeks 12/11/14
dustbear


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Hi Kathleen,

Tig is so right when he says this is the best forum EVER!

I lost weight at first, then regained it by the end. I still can't tolerate salt, garlic, onions or spicy foods. The inside of my bottom lip burns if I do.  EOT was one month ago for me. My fatigue is gone but I still sleep 10-12 hrs.

How long are you post tx?



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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"
DeRanger


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Started out with triple therapy for 48 weeks and finished two weeks ago.  Some things got somewhat better immediately (terrible taste, fatigue and brain fog) others have yet to resolve, but most are less than during treatment.  Other things have started which were unexpected after stopping tx - gout and muscle cramps, keep waiting for another shoe to drop.  I think it is my body clearing the poisons it has been subjected to.  Just have to take it one day at a time like with the shots and pills.  Treatment affects everyone differently, but not too many emerge with no scrapes, scars or tales to tell. 

You have youth and strength, and although things can look bleak and depressing at times, you will make it and reclaim your life.



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1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
Tig


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Hi Kathleen and a big welcome to the best forum on the WWW! I'm so glad you found us and hope we can help you find some answers and get back on track. There are so many caring, knowledgeable people here, I hope the information you get from us will give you the hope you need for your future. Keep looking through our search library and ask just as many questions as you want. The cool thing about this forum is you have no limits!!

I just finished triple therapy last week, so I know what you're talking about. I found serious comfort here in my big easy chair throughout treatment and still do. I first took treatment in 1996 and it took a long time to get my "stuff" back! I hope you have spoken to your Hepatologist that treated you or seek the advice of another regarding your fatigue. It could be a simple blood test or discussion that determines the answer for your questions. Give it a try if you haven't already. My weight also dropped drastically during treatment. If your activity level is low, that makes weight control and energy a problem. One certainly affects the other. Have you spoken to a dietician or nutritionist? I would start there to begin with. A simple diet change may provide you with some good ideas for weight and energy.

Hang in there and stay in touch, we're here to help!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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DJ


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Welcome! I completed my treatment in July and just got my 6 month SVR. The one thing that resulted from the treatment for me that caused numerous problems is my thyroid. It no longer works the way it should and I am now on thyroid medication (and I was told this would be for life). I must admit I was reluctant to begin the medication because I hated the idea of being on it for the rest of my life. But it has made me feel so much better in many regards. I won't list all of the things that were going on, but it seems to have improved many of the post treatment problems I experienced.

Of course, your thyroid may be fine, but if your doctor hasn't checked it, you may want to ask for a blood test to see if it is not working correctly.

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Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
Biggyb


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Welcome Kathleen, you have found a great forum with a lot of knowledge and info. All my post aches and pains i put on my age (58) so that was my excuse..Stick around and you will find some answers.



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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~
Cinnamon Girl


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Hi Kathleen, welcome from me too.  Sorry to hear about your continuing ill health, it must be so frustrating for you especially at your young age.  Thank goodness you cleared the virus anyway, and well done for that.

It`s certainly true that some people experience post treatment health problems, but it`s a bit of a grey area and the causes can`t always be definitely pinned down to the treatment drugs.  There are a couple of post treatment surveys posted at the top of this section (`sticky` posts), which you might find interesting to read. 

Have you had any further medical investigations done since you finished your treatment, to rule out any other ongoing problems?

I hope things get easier for you in time, wishing you all the best. 



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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.

 

 
newmex


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Kathleen,

First, welcome to the forum. I am also new here and just getting started on the treatment  so I cant speak a lot to post treatment. From what I have been reading on here, there seems to be  a wide range of side effects, some major, some minor, some temporary and some permanent. I can feel the difference since I have been on treatment ( 6 weeks)and I know when I get off, I will really have to push myself to get  on track again. For me I am already spending too much time in this chair and I know with out enough exercise my muscles will begin to atrophy and my metabolism will slow so I try to do what I can now, hoping it will help  later. With you being bedridden it will be that much harder. Im sure there a lot of people on here with more experience who will answer you , but you might post a few more details, such as any damage to liver, any other problems, how long been off treatment, etc. Do you still have access to you doc? that might be first step. If there is any way I can help feel free to let me know. Hoping for the best of health for ya!!! 



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John
Kathleen933


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Hello all. My name is Kathleen and I just turned 24. When I was 22 I was diagnosed with Hep C and started the triple drug therapy a few months later. I had a really rough time with treatment, as I'm sure most of you did. My red and white blood cells bottomed out very early in treatment and I was bed bound for most of it. I had my good and bad days of course but most days were filled with fatigue, nausea, vomiting, the works. I lost about a third of my hair which at the time seemed tragic. Being 22 and convincing myself that I was going to be bald was awful. But really, no one even noticed! Other than my mother that went through 2 vacuums ( I have very thick, very long hair. It was everywhere!!). Anyway, I had a negative viral load at just week 2 and after a long hard 6 month battle, I was officially cleared of the virus according to my doctors. I am so thankful.

My questions are this.... I still feel that I have some health concerns post treatment. I feel for my age, I should have more energy. I can't seem to get passed the fatigue. I take no vitamins or medicine other than my nightly sleeping pill, so maybe I should start? I really don't know. Hoping that's where you guys come in with the post-treatment advice. Muscle pain has often been a problem.

My next question is... Is weight gain normal? My weight has always gone up and down from about 130-145 most of my adult life but since treatment ended I have gained a lot of weight. During treatment I was very small because I couldn't taste anything or keep anything down. Just wondering if anyone had experienced this? Getting back to a healthy exercise routine has been difficult because of the fatigue.

I also notice that I just quite frankly don't feel well. I wasn't surprised when I was diagnosed with hep C because I couldn't remember the last time that I felt well. I know my body and I knew something was wrong. I still feel that way. I guess I'm just wondering if it's just me? I mean for 24... Shouldn't I feel pretty damn good?

I am sure I am leaving out so many details and questions that I have had for months but I just came across this website. I wish I would have found it sooner, I could have really used the support and answers. I hope to check in often and give just as much support as I hopefully receive from the regular followers.

I would also like to say to anyone that has been through this.... Yall are my heroes. That was truly the hardest few months of my life.

 

-Kathleen



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