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Hepatitis C: Post Treatment Issues Community
292 Members
2059648 tn?1439766665

Hepatitis C Treatment - 6 Months Past Treatment and Beyond

What was your treatment drugs?  How long since treatment ended?  Has Hepatitis C treatment improved your life
and how?
30 Responses
253566 tn?1219679699
"Focus all on the question.  Yes we can really talk about all the bad things to treatment.  But what did you gain from treatment."

Ya know, life is really interesting! I have come to believe that there is a reason for everything. Call it destiny - some can decide to turn their back on it...

I usually grab my destiny with full gusto... that old saying about lemons and lemonade, right! I know so many people who are so lucky going thru life looking for whata, coulda, shoulda!

I was diagnosed while living a great life in San Francisco! The life of an artist! At 40 I was running and single gear cycling the hills of SF! Fit as a horse! The city had no funds to treat and told me what healthy things to do and I did them.

I was called to help my parents in PA. PA had tons of money to play with peoples health. Once disabled, and fighting for years I won disability. With my parents help and destiny have a beautiful home. Lovely things in it. I live a simple life but miss many things!

My big destiny was to save my parents life. I won't go into details but it was the reason I was brought home!

Becoming an advocate for oneself and others is an amazing tool to have. Most doctors really appreciate it and a few fear us. Maybe that is the greatest gain from treatment!
Avatar universal
Are you asking dor input?  (Not there, yet, myself). Just asking.  Pat
253566 tn?1219679699
Interferon + Riba = 72 weeks of pure h*e*l*l*.

Ended July 2005.

... after reading thru my list of post treatment issues (about 1 year later) to one of the head nurses at the University of Pittsburgh Liver Center the nurse repeated a number of times "I am sorry we destroyed your life!"... things have not gotten any better so I would have to say that treatment not only destroyed the hep c virus but my life.

Thru it all I do try to stay positive but I will never forget those words. At least a validation but WoW!
683231 tn?1467323017
Intron A 3 shots a week treatment ended 20 years ago

Interferon with Ribavirin treatment ended 14 years ago

Interferon, riba plus a trial med treatment ended 10 years ago  

Sovaldi Olysio treatment ended 9 months ago

Currently treating with Harvoni

No known impact on my life except for not being cured and the damages from cirrhosis
317787 tn?1473358451
Hi did you treat for 48 weeks each time?  I am impressed
317787 tn?1473358451
This was written by another member a year ago.  It really hit home for me.  I hope it is ok to share it here

Before taking interferon and ribavarin (Roche's Pegasys Copegasys), I was a busy office manager at a successful structural engineering firm, I ran our own online family business, I traveled regularly, I was active in the community and at my children's schools and activities, I was social and gregarious, physically active, upbeat and generally quite happy and content. I was able to multi task and was energized in large groups if people. I was successful and felt good. After discovery of the hep c virus and recommendations by three gastroentenologists for me to try the treatment I embarked in the worse medical nightmare if my life. Oh yes I'm still, over five years later hep c free after the horrific 48 week treatment but my life has never been the same. I lost my job within months if starting, then I lost my mind. I am now agoraphobic, anxious, have panic disorder, am agonizingly depressed, suffer from bone pain, nerve pain to the point if soft touch hurting me and exhaustion that never ceases. Medications do not seem to help enough that I can feel normal. I go nowhere now. My husband lost his sexy loving  wife, my kids lost their happy healthy mom, my friends lost their copilot and I lost me. This is no kind if life I'd wish on anyone and I am one of the lucky ones. I just pray sometime soon these poisons are removed from the market. Every life is worth saving. Learning to live with hep c would be my choice if I ever had to make it again.  The profit should not be worth these kinds of human costs. What ever happened to compassion and logic. I hope you never have to experience this kind of living death. If you're thinking of the treatment, don't do it. Exhaust every other healthy safe alternative.  Something better will come.  Peace and love be with you.
747988 tn?1396536878
yes I could've written that. thanks for sharing.
2059648 tn?1439766665
Focus all on the question.  Yes we can really talk about all the bad things to treatment.  But what did you gain from treatment.  

I can say that I did decide to retire after treatment due to the fact I was having a very hard time focusing.  My work required that I assure the safety of others and in the condition I was in just after treatment I didn't feel I could do that.  In fact, it took a lot longer than I every imaged.  Some days wondering if I would ever be the same.  

But it turned out that retiring wasn't such a bad idea.  My job was very stressful and employment was full of lots of negative employees.   So I'm good with having to retire.  

So here I sit.   Helping others and noticing that I do feel pretty good for the most part.

What I gain from Hepatitis C treatment is that I no longer fear that I may die from liver failure.   That I don't worry obsessively about infecting others.
That the ongoing possible damage from chronic hepatitis C has stopped.
I get to write cured down on medical forums.  I have a new found knowledge of all things Hepatitis C and enjoy helping others who are struggling to understand it.   I'm I happy I don't have Hepatitis C?  Yes!

I have noticed that my system seems to be working better.  That I don't have days where my site is blurry as before treatment.  I pay more attention to my general health.   My ALT & AST have gone from the high
30s (10 years before treatment)  to the high teens.  Which means my liver has improved and most likely why other functions are working better.



  
2059648 tn?1439766665
I treated with Incivek for 12 weeks and interferon and ribavirin for 24 weeks.
The Incivek triple treatment.  
253566 tn?1219679699
"Focus all on the question.  Yes we can really talk about all the bad things to treatment.  But what did you gain from treatment."

I am about to take my Chronic Fatigue Nap so will mull over your rephrased (or I will rephrase) question...

It would have been better to ask "How has Hepatitis C treatment improved your life?" (Instead of: Has Hepatitis C treatment improved your life and how?).

As before you leave the question open. Has __________?  = Yes or No? Then you add how _______ .

That is what I read anyways, I was horrible with English all thru Uni so maybe I am wrong and someone could correct me!

later, f
317787 tn?1473358451
I saw this woman posting when this question was asked back in April, I think.  I am not sure anyone saw it so thought I would copy and paste, I hope that is ok

I could have written it too, just not as well as she did.
Avatar universal
I am not in fear of progressive liver disease or potentially infecting someone else...or having to fear telling anyone (though I still will tell anyone I am intimate with that I have had and treated sucessfully my hepatitis c).

My skin and coloring look a little better...and my skin is not as dry (not sure why - my liver status was evaluated as F0-F1 prior to treatment).

I sleep better...and my dry eyes have improved...could be a coincidence.

I am less anxious.

Jo
11846610 tn?1421547302
I have been on harvoni for 59 days, I was HepC free on day 25. Light waves of nausea, one bout of diarea (not bad) and quite a bit of headaches. A little of fatigue but I made myself eat well before and during tx. I have 25 more days to go cause the doc wanted to make sure it never comes back. During the past week and a half the nausea has worsened but not so that I cant handle it. Stick with it, this drug works!!!
Avatar universal
What was your treatment drugs? The old SOC for genotype 2, interferon and ribavirin for 24 weeks.
How long since treatment ended? Sept 2012, two years, four months
Has Hepatitis C treatment improved your life and how? No, I have never recovered from my horrible state of being that started during treatment. I was working and functioning normally prior, have never worked since (but not without valiant and actually ridiculous attempts to do so), and have suffered with debilitating muscle pain, fatigue, sleep disturbance, vision problems, skin/hair issues, and many of the symptoms associated with hypothyroidism, polymyalgia rheumatica, rheumatoid arthritis, fibromyalgia, nueropathy, guerre barre syndrome, sjogren's syndrome, chronic fatigue, chronic pain syndrome, etc. Those are some that docs have suggested, tested, but as those of us who have never recovered from treatment know, many of these are crazy to diagnose, and generally have no treatment that will actually restore any quality of life. Those that can be dx'd with tests...all of my blood work is "excellent" so I don't have those. No inflammation markers of any real significance or any other red flags.
My life as I knew it ended, and I have been doing nothing but searching and trying this, that and the other with meds, cannabis, diet, exercise, etc., etc. but with no substantial results.
Yeah, life ended at age 62. Still searching. I hate to be a Debbie Downer, but that is the situation.

Did I save my liver, yes, and one must be grateful for that; however, living in a chair is not exactly something to live for.
10175413 tn?1427170251
Hi all, it's only been 3 days since I have stopped Tx but I have to say I noticed a huge change at wk 11 (sov/rib 24) it was this burst of energy that honestly I haven't felt in over 30yrs. I'm more active and I feel like I did when I was a lot younger. It's amazing to me and feels a bit foreign after so many yrs of feeling "off". I'm wondering if it's because my liver is working properly now. I can say that my life has begun over. I'm really grateful.
Thanks for letting me chatter on!
Be well everyone
Peace
Deb
747988 tn?1396536878
fabulous news! always nice to hear good news! taking the interferon out of the equation seems to be working! I only wish I'd been encouraged to wait but unfortunately I am also left in the same state as Faithforlife,my life ended 8years ago around week 11 of interferon/riba treatment.        
10175413 tn?1427170251
Hey Watcher....yes I can relate. My first Tx in 2011 was triple with Incivek, and I was only able to last 5 wks, just too sick to continue. Transfusions, anemia and now lasting bone pain, joint pain so bad.  
On the bright side I'm going to have SVR this time! Yaaaaaaaaaay!

I'm so sorry that both you and Faith are left with the wreckage of the old school poison. I hope that somehow some way you both will see some changes for the positive.
Be well & Peace
Deb
747988 tn?1396536878
As you say there is always the bright side achieving svr! Thankyou and Woohoo! once more!
Avatar universal
"How has Hepatitis C treatment improved your life."

A question that could get a different answer if posed to oneself every 6 mos. or so.

I am about 24 wks out from Sof/Oly - no previous treatment.  Very few sides during Tx. .Had virus maybe 40 years.  Am SVR!.  I have had super days of clearer thinking than in some time and lots of energy.  But then other days when I have draining fatigue.  Hard to unwrap all that has emerged from the HCV Tx.  Diagnosed with slowing growing Non Hodgkins Lymphoma and treated to remission a few months before new anti virals were approved.  Lymphoma likely result of chronic inflammation from the virus over so many tears.  Have cirrhosis which may have been exacerbated by the cancer of the treatment for it.  Not seen in my 2010 biopsy.  Near end of HCV treatment began manifesting autoimmune and inflammatory disorders that I never had - or knew I had before - oral lichen planus. granulomas, dry eye. mild neuropathy, Sjogren's. Takes a lot of time to manage the care regimens and see the doctors - working on streamlining this.

But all that said, I enjoy my core interests and a reduced work schedule that is allowing me invaluable time.  I feel in my gut that the cirrhosis would have advanced to HCC and transplant without HCV treatment.  I may get liver cancer in due course, but the SVR has bought time for however long.  And a cure for lymphoma and cirrhosis may be found while I can still benefit.  HCV treatment, while costly in some ways, is a moot question for me - it couldn't have been avoided.  I would have become sicker, more brain clouded, less functional, less interested in life and doing the most that I can with what I have.  Not acceptable options to me.  My attention has been riveted by all this, and made me calmer and more forgiving.  This personal growth alone is quite valuable, IMO.
Avatar universal
Hi Guys,

I did 48 weeks of interferon/ribavirin/procrit/sleep meds/anti-nausea/etc :)

Finished last summer. I found out about a month ago that I reached SVR, hurray for that.

What did I gain? So much. First I want to say though that a few weeks after I started treatment a good friend of mine who refused to treat developed liver cancer and then she died a few days after I finished my treatment. And she was a well-loved nurse of all things. So there ya go. Choice is yours. Live or die.

So I know I wont die an excruciatingly painful death as my friend did, that's one thing I gained. I could still die a painful death but highly likely not from liver disease.
I felt my treatment was a very spiritual experience, and I feel more connected to God than ever before.
I have issues with stiffness and fatigue now, and I may never be the same as I was long before the treatment. But that's life, and aging. So what if I need more sleep and its harder to stand up or sit up. My mother was in a wheelchair and paraplegic for half her life. She couldnt go to the bathroom by herself and had no bladder control. She had MS, and she died in her late 60s of recurring pneumonia.  As long as I can take care of myself Im doing pretty good. Life doesn't seem to be all that fair. Maybe we are burning past life karma, who knows.

As someone said, I dont have to worry about infecting anyone anymore. Thank God for that. Fine if I have it, but god forbid I infect someone else.

Now I find that I don't sweat the little things as much as I used to. Things that used to annoy me a lot I just dont pay attention to so much anymore. I don't have the time or energy for that.
As I did before treatment and I do now, I keep involved in serving others and volunteer work as I am able to. Sometimes its jobs that I get paid to do, like teaching and helping in the schools, and sometimes I'm just a volunteer. Keeping my focus on how I can help others (even if its only a very small thing because my energy is low) keeps my mind from focusing on feeling sorry for myself.

You guys were a big help to me when I was on treatment. I didn't post much. Plus the meds made me go slowly crazy and finally not sleeping for 5 days and nights I had to be hospitalized and medically knocked out. And that's just one of many many stories of problems I had. But those of you who have devoted so much time to helping others get through this, hats off to you. You are really angels in human form.




2059648 tn?1439766665
This hepatitis C treatment did change my life forever.   I don't sweat the little thing anymore either.  I appreciate the simple thing and hope only the best for everyone who goes down this path.  It's a journey of vast inlightinment.

Best to you
Avatar universal
Have Hep C presumedly the variety that has a high cure rate..Now down with high iron as well. Doesn't look surprising just do I let them leach or is there another treatment. Haven't started on the Hep C treatment and hope that will eliminate iron problem, but don"t know. Any thoughts?
.
Avatar universal
Hi what tx did you have?  Thank you.
Avatar universal
I just reached SVR 12 two weeks ago from a 12 week Harvoni treatment. Prior to that I treated 3 times including Incivek and Ribiviran.  I feel good right now, and the Harvoni was a piece of cake for me. The treatments with interferon and ribiviran really effected my moods, and I think I lost some friends and possibly a promotion opportunity at work. I didn't tell anyone I was on treatment except my wife. People are still uncomfortable with this disease.  I am looking forward and not back right now. I don't know what long term effect all of these lethal drugs will have on my system, but nothing will surprise me. So I am ecstatic that I reached SVR 12, and I feel better,  but I am concerned about some of these drugs coming back to wreak a little havoc.
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