Hepatitis C: Post Treatment Issues Community
Welcome to the Hepatitis C: Post Treatment Issues community
About This Community:

This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints.

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Welcome to the Hepatitis C: Post Treatment Issues community

About This Community:

This forum is for those who have taken HCV treatment to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints

Looking forward to everyone's posts and participation.

No need to be shy ~ I've posted the first post on your new community.

Best,

Cheryl
MH Community Mgr
Tags: Hepatitis C Post Treatment
26 Comments Post a Comment
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317787_tn?1373214989
Hi, anybody home?  Sounds a little hollow in here :) I think they will come.  What is that saying from Field of Dreams, build it they will come?
Just kidding.
Thank you MedHelp, I really appreciate this, I do believe it will help a lot of people who are out there reading, searching.  Many people read, never post, yet I believe they are helped. This is a good place

Thank you all for looking in to it.
Dee
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317787_tn?1373214989
oops, I forgot to join :)
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1815939_tn?1377995399
Yes, thanks for creating this forum community.

I am trying to join but I cannot remember how to join a forum community. I clicked on the "Join this Community" and nothing happened. LOL.
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1815939_tn?1377995399
Never mind. I am in the community now. LOL.
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Avatar_f_tn
Happy to see the forum up.

I treated with Sofosbuvir and Ribavirin.
I was already cirrhotic and suffering from a number of extra hepatic manifestations when I treated. I found the riba challenging with a bit of a rash, insomnia, tinnitus and irritability.
Since SVR my extrahepatic and cirrhotic symptoms have eased considerably though I still experience fatigue and some joint paint.

For me, the biggest challenge of my HCV travels has been losing my health and my abilities and then gradually experiencing a return only to have it stop somewhere before restoration of my "Old self". I am grateful to be alive and to still be kicking but I do not think I can be who I was before I got so sick and the struggle now is reorganizing and creating a life that is productive, creative and healing with and without previous abilities.

I am interested for those of us still struggling, to read your stories and your thoughts on how one recreates a life.
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Avatar_m_tn
Well, I saw this last night and was surprised and pleased.

I think it is for all of us, and I think it will be instructive for many groups of people.

If you are a student of Hep C, or the various types of treatments one uses to cure the virus....
or how
the virus..... how treatments..... how aging....how other allied drugs used ..... or other extra-hepatic symptoms, diseases or unrelated disease, diet issues, supplements may all fit together.

I'm not sure it is ever only ONE thing.

Anyway....I hope this is a place some of these things can be talked about, ideas shared, data shared, results shared.

There are other HCV forums with similar sub-forums on life post TX, and I think it is an important topic that may affect more of us than we may think.

Thank you to those at Medhelp who helped make it possible, perhaps particularly Emily.

willy
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253566_tn?1219683299
Thanks for starting this ball rolling Dee! and that MedHelp did the right thing!

Yes, there may be other HCV forums with similar sub-forums but there is no other place like MedHelp and the community like what we have at HepC *good and bad!

***and what an honor to post under willy... (lol) unless someone just posted before me then UGH!!!
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Avatar_m_tn
  I too am glad to see this. This site has helped so many of us. For me I doubt I would have made it on my own.
I have some pretty bad ringing in my ears post tx. I don't know if its tx related, but hard to imagine its not since I never had this issue at all before tx. I also have bouts of tendonitis that seems to flare up for no reason. What I mean is I haven't strained or lifted anything heavy and my elbow will hurt so bad I cant zip my jacket. Some days are worse than others, and its been three months now with no improvement. Anybody else have this stuff? I really hope not. I worked construction all my life with no sign of this and now I have a job in the office and hurt more than ever....lol. SVR is great though so I wont cry about some pain, but I hope it dose not get to the point where it affects my quality of life. HCV sure could have.
Thanks Dee and all that helped make this a reality!!

Larry
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317787_tn?1373214989
This is amazing! Thank you all for your comments!
Emily and Claire got the ball rolling up to their upper management ofice or maybe they flipped a coin ha ha and now there is a place.
I could not come back yesterday, this morning I opened the forum and could not believe all the people that have already posted!

Rivil, I know how you feel about wanting to be me again, I do think it takes a lot longer for those of us with more liver damage to improve.  It has been 18 months since I finished tx.  I am striving to get better every day.
A supplement I just started is Serrapeptase.  It is supposed to help the entire body by getting rid of old tissues blod blockage in the body.  I started it for my shoulder which has grown all these adhesions/scar tissue.  I am hoping this will help me to rip it apart eek! That is what the surgeon said.  He will put me to sleep if the PT does not work.

Pooh! I did the same thing! I could not remember how to join so had to come back.
Frank happy you are still here to try to find help, I do think it is just around the corner.

Maybe if acceptance comes here it will trickle up to the research teams
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317787_tn?1373214989
Thanks so much for your post.  I always think of you.  I am curious, would you say that you have improved since before treating?
I do think that it is all a mixture, the HCV for so many years, then the damage to our liver and/or extra hepatic manifestations mixed in with tx, inactivity etc.

I...like you, am trying very hard to recover.  I just realized that the way I sit at the computer is not helping my frozen shoulder.  So I guess I would put that under inactivity where I am reading post and not moving....the shoulder isn't the only thing that is going to freeze.  I need to look at more of the bad habits I have developed in the past two years.

You are all just great!

Willy50, thanks for all of your participation
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317787_tn?1373214989
Thank you and Emily so much!!
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Thank-you for creating this new and very important site i am sure it will be well used we appreciate it Jules
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Avatar_f_tn
"I am curious, would you say that you have improved since before treating? "

Yes, I have most definitely improved since SVR.
Before treating I could not carry on a conversation beyond a sentence or two, I constantly forgot where I put things and often spent hours limping about tearfully looking for my car in public parking places. (It is funny now, but then I felt so helpless and desperately lost) I could usually only walk with a cane and to rise out of a chair took several minutes. I had constant pain and digestive upset, bled from my mouth and nose frequently as well as lesions and I itched so badly I would immerse myself in ice baths.
Yeah, you get the idea. LOL
Now I just limp a little and feel mild joint pain and though I am very tired by late afternoon I am able to function reasonably.

I am trying to figure out how hard to push it...do I throw myself into something and ignore any pain and tiredness until I get my old groove back or do I tread carefully. Is my health compromised or is my view of my own health compromised?

The HCC is not an issue at this point because it is so early stage I have no side effects. So my focus is just trying to find a new niche in life where I can do some good.
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317787_tn?1373214989
Hi there, so sorry I have not been able to log in, was sick all day. I think it was me going too far to try to get better :)  I am an all or nothing kinda person and I think I did all.

I am sorry for what you were experiencing before tx.  I can relate, I have had times where I could not find my car.  I finally had to hit the panic button :) or days when I could not remember my neighbors name when I tried to introduce them to someone.
I can also relate to the fatigue, some days are better than others but the good are out weighing the bad as I go along.  I do beat myself up quite a bit for all the things I can't do.  Bad habit.  I should be grateful for all that I can do. :)
Of course I still drink a lot of water as I think it all helps, every little thing we can do is cumulative.  At least I hope it is :)
I think I am doing better now, it has been 19 months but my hair is coming back, my legs are looking so much better.  The iron stains from the blood leaking under the skin are going away. (Cyroglobulins)
I have had some setbacks but think they were just things that happen in every day life.
My PF is just about gone, after 6 months in a cast and  hobbling around I learned to stretch the calf muscle every day.
I think this frozen shoulder is already getting better.  I do the exercises every day sometimes twice a day
  I can feel the warning twinges in my other shoulder.  Maybe I am not watching my sugar as good as I should though there are other reasons for the problem as well, low thyroid, female, post menopausal, eek!

I really appreciate you sharing with us.  It is so important.

Cheflady, so nice to hear from you.
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317787_tn?1373214989
I meant to say...like you I am testing out my boundaries to see how far I can go and still feel well the next day.

In my case, back in 2007 I felt really good, was diagnosed with diabetes, had lost 30 lbs, felt better than I had in years.  Then I treated and things changed.  They might have changed anyway, not really sure.:)
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2136167_tn?1374732251
Thank you for creating this forum
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Avatar_m_tn
I tx'd the first time in 2001, and it was a terrible experience. There were no sites like this and the available info was what you got from the Dr that was txing you. They kept records very awkwardly compared to today and let a person suffer way to long before they gave up, or in my case I finally had enough. The main thing I noticed at that time was my memory was ruined. I could not recall names of things that I knew I had known for years, And that seamed to last for as year or so after I had stopped.
My tx with triple was not as horrific as the first and the memory thing not as severe. I had my one yr post SVR last June, and still if I am under pressure to remember the name of something, once in a while I just cant recall things like I used to. After my first tx I recovered that memory issue better and faster than this time. Granted I am 10 yrs older, but I wonder if anybody else is having memory issues.

God Bless,
Larry
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Avatar_f_tn
Yay!  I am so excited this is here now!  Thank you!  I have felt super-alone with all my health stuff....I am so grateful to be cured, no doubt....I just wonder what's to come....
I finished 6 months of triple therapy in May 2012...
I have massive nausea stilll - eating tons of ginger
I require lots of water still (no big deal, but I'm scared not to drink at least a gallon a day because I certainly pay the next day if I don't)
I have memory issues too, I guess it's like chemo brain
Body aches, muscle throbbing....at night it's much worse..I get massages to help
I'm still itching (from the inside) like the riba...no one can believe it but I am
Massive fatigue
Intolerant of hot weather (and probably really cold weather coming soon)
My weekends still feel like I'm doing treatment...flulike and bedridden much of it
Digestion/bowel problems - a recent probiotic is helping
Depression (of course, i think we all get that) although it's much milder than during tx
Not much appetite
I AM able to think better at work just recently a couple days a week...yay
My bladder is better than pre tx...It was overactive before...yay
My back is better...not as much pain as pre tx....
I do walk regularly on the treadmill.  I do eat right.  I have "recommended" supplements that I've learned here.  
I meditate regulalry (life saver!)
All my bloodwork checks out okay, thyroid, etc...just had a full physical in August.  My doctors have no ideas....
I just get to feeling really alone when I can't plan to do things since I never know how I"m going to feel....sigh...
So I'm not sure if other people are feeling some of the same stuff I am.  I get angry and then I get accepting.  Right now I'm just trying to stay in the moment and enjoy any clarity I have....
Thanks everyone!!!
Jeannine
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Avatar_f_tn
So I tried to serropeptase.  It took away a lot of my pain and gave me energy.  It kicked up my over active bladder though and the pseudo energy crash is too much.  I experienced a similar crash when I tried NADH.  Oh well, nice try :)  I think I'll just keep doing what I'm doing and wait.  For many of us it takes 2+ years to recover.  I'm oh so grateful to be cured.  Thanks for being here everyone
Jeannine
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Avatar_f_tn
Thanks for checking in.
I know what you mean about being grateful to finally be HCV free. Our bodies have taken a lot of abuse over the years with that stinkin' virus.
I have my ups and downs too though I believe my supplements and activities have helped some.
Hopefully we will all be better in the coming year.
Keep in touch.
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317787_tn?1373214989
Thank you so much for your post. I had similar problems with the NADH after a while so have decided while it did help me when my brain was really foggy, I am better now, so do not need it.
I agree with you, it takes time.
I really appreciate you sharing about the bladder, I am experiencing similar symptoms so will reduce the serrapeptase a bit.

Thank you again for your help
Dee
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317787_tn?1373214989
I agree with you, I am grateful to be cured
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Avatar_f_tn
I'm working with my diet more and finding foods that help me and some that hurt me.  Can others share their experience?

Foods that make me feel horrible the next day:  high fat meats (sausage, hot dogs, corned beef, steak, cheeseburgers), pizza
Foods that give me a big fatigue crash:  bananas
Foods that help me:  protein (eggs, hummus, peanut butter), lentils, fruits and veggies
I switched to soy milk in the spring.  I'm not sure if that's doing anything or not, but from all the anti-inflammatory diets I read, it seems like something to try
Please let us know what you've found...
Thanks
Jeannine
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1321487_tn?1385298279
I don't have the itching.Everything else is same. I'm three years post tx. I'm lost. Any advice?
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317787_tn?1373214989
Hi I have been working on my health doing a lot of research to help me.  I recently received a juicer as a gift, I am juicing every day.  I hope it helps.  All in all I feel pretty good.  My only lingering issue seems to be my conception of time. It is way off.  I guess it could be age though I did not notice it until I was on tx.  Time seemed to go slow and then speed up. On tx I noticed it along with a super increased sense of smell which I read could be brain related..  The sensitive nose went away along with most of my other sx.
The only one that remains is the  conception of time problem.
It is better but still seems off
Thank you
Dee
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Avatar_f_tn
Just checking in....found an awesome rheumatologist....found I've had fibromyalgia symptoms most of my life and the depression from interferon put me over the edge to full blown fibro.  I'm learning exercises and stretches...pushing myself to exercise more than I have....learning  mindfulness therapy which is a huge chronic pain management tool....and starting to connect some foods to how I feel better or worse....Having fibro makes me sensitive to medications (and foods) so that explains why recovery from triple therapy is taking this amount of time (22 months so far).  
Just thought I'd throw this out there in hopes of helping others...
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