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Avatar universal

post hep c treatment side effects

After 12 months on peg and Riv and responding THank goodness... I have 3 1/2 months to go of the required 6 months and I still suffer from side effects esp. extreme tiredness.  On anti depressant or else I,d be very down.  I am new to the computer and to the forum as well as to support.  I want to learn from others how it has been for them after treatments.... 6 months and longer. I sure would like to feel better... I expected to feel better and so that is why I am disappointed... I sleep a lot.  I am truly tired.  All tests are good but.. thank you "CHICKEN" Question: what have others experienced as far as side effects after treatment?  Geno type 1 Chronic active hep c
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Avatar universal
You are right, this is an old thread.

However, there is a Hepatitis C Post Treatment Forum that is active.  Go to the top of the thread, to the blue band across the screen, just above the tree of helping hands and select 'Communities' When it comes up, go down to the H section and select Hepatitis C, Post Treatment.

Good luck.

Prayers and Blessings.

Pat
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Avatar universal
i know you posted this a couple years ago cause its now 2015.   and boy do i understand where you coming from.  i took pegulated interferon and ribavirin for 48 weeks in 2005. it was the hardest thing ive ever been through i finished treatment in sept 2006.  and i've not had a good day since. it took me 5 years to fight for disability. but been on it since. (thank god) ive had so many  strange things happen to me sometimes i really feel crazy/ when i started treatment i was in outside sales, selling yellow page ads making close to $150,000 a year lost that  and by the time i finished treatment i believe it was 13th things wrong with me by then. so now its 2015 i turned 55 in Jan and i've been basically in bed since i started treatment. ive noticed there isn't much for post treatment for HCV like with cancer surviors etc....  hope your better.....
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1815939 tn?1377991799
Welcome to the forum.

Everyone reacts differently to the medications. Many people have few side effects and/or milder side effects. Perhaps you are one of the people who has milder side effects. In addition, while I hope you continue to have only mild side effects, the medications are cumulative and sometimes the side effects get more noticeable as time goes on. Here's wishing you a smooth and successful treatment.

I just want to mention that this thread is a very old thread. Not many people will read it. In the future, if you have a question, please start a new thread so that more people will see it and respond. You will get more responses that way. To start a new thread, just go to the top of the page and click on the orange "Post a Question" rectangle. Then insert a subject title and post your question.

Best of luck.

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Avatar universal
Hi, i have recently started treatment had my second injection monday apart from felling tired and a little rum down and a rash around the injection site, i fell great i think working full time and having family and friends around me is making it easier but in the back of my mind im thinking is this treatment working for me im scared because im not felling to many side effects is it working????
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Avatar universal
Have u changed your mind yet?  What geno type are U?  I felt the same way as you did, but as I am approaching medicare age, have decided to bite the bullet.   After age 60 I started feeling pretty crappy.  
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317787 tn?1473358451
While I realize that this is an old post, it still seems to be alive.  Is it possible that the more damage to your liver at the time of tx the more sx during and/or after tx?
Thank you all for your posts, really good thread
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Avatar universal
Hep c treatment screwed up my life
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Avatar universal
I went through a clinical trial.I was on the highest dose of interferon,ribavirin& a  protease inhibitor.the first month I could barely move after that it  was constant persistent  irritability.anger,frustration,severe anxiety and nervousness .this eventually manifested into full blown clinical depression  with suicidal thoughts.Being extremely stubborn  I still continued  faking to the doctors that I was ok .I was clear at 3 months clear at 6 months and had to be taken off and sent to the psychiatric hospital .The hep c has returned .post treatment troubles are plaguing me to this day with unremitting  treatment resistant depression and anxiety as well as body aches and sleepless nights.I lost my construction business -unable to work and am on disability.I have no energy 6 months after tx .I went into tx on one antidepressant and am now taking 5 different pills for the mental and physical ailments.I read from another post that a fellow's neurologist mentioned that hep c tx can mess with your genetic code.It certainly has with me..If your liver isn't falling out of your body please eat healthy take milk thistl and other liver friendly supplements.Until better treatments are available being interferon&ribavirin free.They are working on such treatments now so hold on and please make an educated decision .DONT DO CLINICAL TRIALS.As the doctors facilitating these trials get paid a pretty penny by the pharma company behind the new drug.My life was way better before treatment even though I had fatigue issues.If I could go back in time I would wait it out ,eat healthy take supplements and go to work as well as play with my son.Don't mean to be so negative but that's just how it has been for me. Good luck to everyone and I hope life blesses you all with strong health and good fortune
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Avatar universal
Wow !  Didn't expect to be writing to you today.  Just came in from a few hours of gardening to take a short break.  Saw a notification of your post and thought that would be a good way to spend the break.  So here I am after 1 1/2 years of not posting.
After reading through everything from 2007 on I was terribly impressed with a few things.  For you, I ask that you take to heart that every person responds differently.  
You, being young, hopefully will be a benefit and land you with better results.  Plus treatment continues to improve in effectiveness.  I know it is better than what I had - and certainly better than what was available even 2 years prior to my treatment starting in 2003.  You are in a good place and time to "get rid of it".
I understand that in reading this forum the post-HepC symptoms may sound dismal, depressing and even scary.  So what's the option? . . . Feeling even more crappy through time?  Possible eventual liver failure?  A real yukky way to go !   You are the age of my oldest grandchild and if she asked me what to do I would say "Do everything you can ~ the best you can !"
I understand, also, that the medical care can be or seem uncaring and worthless.  True - they are not in your shoes.  I strongly suggest that you take with you to every Dr's appt [and even lab draw] a personal advocate.  This should be someone close, that you know well, trust, and loves you.  It is good if that person is knowledgeable and articulate enough to state and stand up for your needs.  I don't mean getting bitchy, but helping, supporting and advocating.  {I recently had several months with my 94 year old mother going through some things.  She is an amazing lady - independent, active, able, emotionally and physically strong.  But when things started going weird and bad I found that she wouldn't/couldn't express to the doctor's what she had shared with me.  I guess we are a lot alike in always wanting to be seen capable.}   Please find that person in your life that you know will be there for you and make them part of this process. ( I remember a day when I was very ill - camping out in my living room to be close to the bathroom.  A dear friend stopped by.  Too sick to be wanting any company - or being company.  OK with her.  She just sat across the room to 'be there' with me.  I will always love her for that.  I wouldn't have [and still don't] have the patience.)
I know people differ on this, but I suggest you let people close to you know what is going on.  I don't know if you have children.   At the time of my diagnosis I had several of my 'mid grandkids' spending a good amount of time with me when I was not working.  {I also informed my work partners.]  I was so concerned about the grandkids running to my aid if I should hurt myself.  The rules were:  It is OK to hug, snuggle and eat with grandma.  But if you see grandma bleeding, let her take care of it.  If I was hurt enough that I couldn't do for myself, just call 911.".  They were not allowed to come close if I was bleeding.         Your responsibility is to those always or often close to you to inform, educate and set guidelines so they can help while not being potentially injured while you are still viral loaded.
As strange as this may sound [coming from a nurse], I have always been a strong advocate for herbal remedies.  Pre and during treatment I took Milk Thistle, Black Cohosh and other herbals and vitamins.  I feel strongly that the Milk Thistle helped me reduce my viral load from 17 million to 11 million prior to treatment.  The Black Cohosh was for menopausal concerns.
As far as all my woes of 2010 . . . Yeah, I still put a lot to the HepC and post treatment symptoms.  Like others have said on this forum 'I will never be the same' or 'I am not myself''.  All still true, but I did put on quite a pity party and blaming it all on HepC treatment, and the consequences of that treatment.  In truth, it is just as likely that many of the 'after effects' were related as much to my age..  Did I lose a  a bunch of hair during treatment?  Oh yeah !  But, being my age, we all lose hair all over.  {The blessing is that I only have to shave my legs weekly in the summer instead of twice daily.  Armpits....well, that goes to monthly.  Sorry you are not post-menopausal yet.  It does have its benefits.)
Pain and/or discomfort - - certainly that's going to be different for everybody.  I don't doubt it is or will happen.  But for mine, as expressed in the 2010 diatribe, well, what could be expected after decades of lifting, pulling, pushing heavy loads of either people or things.  Things break down with use, even when you use them.
As for depression, so often discussed ~ each to their own.  I never took anti-depressants of any sort [well - wellbutrin when I was trying to quit smoking and another during  a heart breaking divorce] - all were short term and situational.  Indeed, depression can come about from chronic pain, fatigue, disability.  I mean - who wouldn't become depressed with that triad ?  Deal with it in the best way possible for you - and you alone !
  If it is exercise and healthy eating - go for it.  If it is prescribed anti-depressants - that's just OK too.  There are lots of things in between.  All is OK.  Just don't take a 'wheelchair' when only a 'cane' is needed.  You have to know yourself honestly for those decisions and, maybe, your HepC advocate.

Now I am doing what I always taught my CHF patients to do -  - Exersize in your own way, to your limit, then allow your rest as you need.  It may not be up to what you have been accustomed to, but it is what you can do.  Be joyful in all that you can do while taking care of yourself.  Push your limit, but don't overdo your limit.  That takes some self realiztion.

All in all, you are seeking.  You are scared.  You may want direction.  Here is what I have to offer ..........
Do all that you can do - right now - in every way.  
Take the treatment.  It may seem ghastly, but it is what is what we have.
Be strong and proud of yourself.  You are facing a disease and cure that is hard in any way you look at it.  But you are willing to plunge through this awfulness to have a full life.  Have faith in all the powers and yourself to know you can and will.
Enjoy every bit of your pleasures, whether it be gardening, children, family, art, music, science, work, hobbies, ...whatever.  This is not a 'send off' to those afflicted.  It is a way of saying that taking the time [your good time] to enjoy the things that most inspire and  endear, you will keep long term depression at bay.  There is much to live for and you have a long life to be there for it.

I really do not like to intrude on the lives of others, so please forgive me if I have over stepped my bounds.  I wish you peace and health within yourself.
Joi
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Avatar universal
Hi I just got diagnosed July 3 and I'm 25 ihave been really sick am tired before I found out thought I had diabetes but its hep c i have to go take another bold test today to see what stage I'm at I'm trying to learn about this nasty disease just need some input please!!!! I'm kinda of scared because I hear that the treatments can make u very sick and I'm already sick I can't take this the way I see it is that I'm just gonna get sicker I don't understand none of this I jut understand how I got it!!! But I want to get rid of it
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Avatar universal
    
I had to be taking off the treatment after 6 weeks my viros load for the HEP C WAS 850 ITS NOW 6000 im also HIV witch from 450 to 325 THE VIROS COUNT drop I frlt before the treatment i was doing good with my life likt studing 3 day a weeks yoga one day at hope i make lamp shade and write and read to me that a good life now guess what i can't sleep cant do much thought i get my self sweeting all the time at the moment I DONT WANT TO SEE A DR AGAIN Im letting it sort its self out and it will
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Avatar universal
Sorry... it sounds like your experience with the medical professionals has been less-than .. I feel blessed to have had the experience I got. I found a great specialist who ran a great clinic, with staff I felt really cared about their patients.
I also tested positive for RA about 5 years ago (a few years after getting my hcv diagnosis) .. I've had intermittent pains in my hands since my mid-30s but since it went away, and didn't really interfere with my life I didn't do anything about it. My rheumatologist explained the RA and Hcv exacerbate each other. And, due to my liver, he was limited to what he could give me. Since my symptoms were so mild I never took anything. Now that I'm done with hcv I'm noticing more RA pains, which will likely get worse - but, hey, I'm in my mid-50s also....no more a spring chicken! I am also a realist. Just offering this, so you can know that it could be the hep that's adding to the RA symptoms.
Wish you some comfort and healing in the days ahead.
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Avatar universal
I just saw that you addressed this to me ..  I got my final results March 2012. "Cured" were my nurses words!  .. First diagnosed in 2001 .. didn't even think I'd ever hear that.
I agree, there's lots to be said in 'misery loves company', and hosting the occasional pity-party ... but it is important to also express the positive as much as possible. I've learned that so often from many friends who deal with HIV or cancer. I hope you had final success with your treatment as I did ...again, thanks for your message! :-)
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Avatar universal
Well, had my final appt in March .. and I have been successful in maintaining SVR!! As the nurse said: I am cured.
Yes, my previously-always low cholesterol rose during treatment, and has stayed elevated .. but my GP isn't too worried. The weight I lost -it found me again!! My thyroid is under-performing (but not according to Canadian standards), and my hemoglobin is still on the low side, so I need to explore increasing my iron (which I'll do before I worry too much about my thyroid .. lots can throw that out, anyway, which has happened often throughout my life).
Low energy, hair loss and insomnia? I still do feel tired once in awhile, but that could be connected to the low iron; the hair stopped falling out in handfuls some time ago...I've just gone shorter...and I think I'm seeing regrowth along the hairline. The insomnia happens occasionally, but since I am menopausal that could be connected.
The bottom line: I don't regret doing the treatment. It *was* hell, and it ain't for no sissies, that's fer damn sure! But, neither is aging.  
I am glad I waited, I am so grateful I got into a study where I was only on  the standard tx for 4+ months (not 6).Treatments are getting better all the time. A friend may be in a study in June that does not use interferon/rib combo at all .. and is only 6 weeks. That sounds promising, and amazing.

Whatever your decision, remember, it is your health, and your journey.
All the best to you in yours.....
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Avatar universal
Boy, do I agree with alot of your side affects, like blowing up for no reason, my depression is well controlled, but not on this 'poison' as I call it too.  I have stopped treatment after 6 weeks, the virus was undetectable at 4 weeks, but I stopped because I could no longer deal with firarrhea and now my teeth and gums are bleeding when I brush . . .I am not losing my teeth over this and now explosive fits of anger, then crying . . .then aching joints,  then exhaustion takes over . . .so pray it stays undetectable for me.

Wish I had visited here sooner, but if someone has after tx side affects to share, I would love to know what is next with this.
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Avatar universal
Have them check your thyroid if you haven't done so already. The tx can cause long lasting thyroid desease, which can also cause extreme fatigue.
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Avatar universal
I'm tending to my daughter who's suffering this week with a nasty upper respiratory bug (adult-"child", who seems more child-like when she's ill) .. and it gave me an image of what I must have seemed like in the midst of my interferon-misery as she heaves and sighs and can barely move to just drink her fluids. What a mess I felt like this summer - the summer that wasn't, at least for me.

But walking thru' our warehouse at work today, I realized the lousiness I felt a mere few weeks ago is becoming a distant memory.
I'm still experiencing my holy trinity: insomnia (posting at 3am!), dry skin/rash (actually, blepharitis) and the hair loss...oh, the hair loss! But the fatigue - not there. Haven't taken anything for aches or pains in weeks...which is lovely. Appetite - pretty much normal, tho' I still have some of the odd cravings I had during tx. But I've only regained about 5lbs .. tho' with the Holidays approaching, I might have to be more disciplined. I haven't even 'celebrated' my 12-week SVR status with a toast yet, as other personal issues/problems have taken precedence. And for the most part, I have the energy to deal with those problems, and that includes physical AND mental energy, something of which I was in very short supply throughout my tx.

For those who feel they are no longer the "real persons" they once felt they were, I don't really know what to say. I know I'm not the 17-year old, or 24, or 36, or even the 42-yr old I once was. I'm now 52. And I think I have the energy of the average 52-yr old. I don't think I'll ever have the same energy or verve I had at those ages. (Hell, I know my RA pains started in my mid-30s, I just didn't know it at the time, but it wasn't enough to hamper me back then). All I know is, today, I feel I can lay to rest the fears I had a couple of months ago when I was anticipating a more negative result of this experience. While circumstances (mostly financial) haven't let me explore the alternative avenues to continue cleansing the meds out of my system as I planned, I also realize that my body is doing that anyway. But, just noticing .. and focusing .. on the positive aspects so far have gone a long way to my improvements both internal & external. Everyone around me has noticed how much better I look, sound and seem. And they're right. If I want to focus on the negative, I will likely feel that way, too. This attitude is something I learned from my many friends in the HIV+ community. Outside support is one thing that can go a long way to help, but it's important to remember to support ourselves internally, too, and that comes in very personal forms. I think as long as it's working for you, then it can only do good. But if I'm expecting this tx to be a magic bullet, or a 'restore' button that will transport me to my halcyon days of being an immortal 20-something, then I'm being unrealistic. And...that, I've discovered, has been something of a 'magic bullet'!  Instead of taking on too many projects now I'm back at work, or working thru' my break 'cuz I've got the energy, or getting all my weeks' worth of grocery & meal-planning organized, and getting all the housework done in a couple of hours (and feeling like a failure if I didn't get all my To Do's done),  I learned to let go...a lot! And I learned the world won't stop spinning, since it didn't this summer when my fatigue forced me to let go .. a lot! I shop less, eat less, drink water more, do less housework, hang out with my friends or kid more often, and if I try to honour my physical self more .. if I'm tired I actually rest or nap (I was never a 'napper' before). I prioritize what HAS to be done, and let go of a lot of stuff that really isn't essential.

So, while I can't recommend that anyone do .. or not do hcv tx, I can say that now, I do not regret my decision. Everytime I hear of someone who has died recently of liver cancer (which I know could be from any number of reasons besides hcv), I think, "that could be me...in 20 or so years", but I just don't think it will happen now.

I will try to remember to post something after my December f/up. My LAST post-tx appt will be March 2012. Maybe then I'll toast a celebration. I wish everyone else the best of luck wherever you are in your hcv journey.
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Avatar universal
ptz
This is my third tx. I was a non-responder the first time and a relapser the second.  Both tx lasted about 6-7 months.  I'm currently in triple tx with Vic. week 21. Non detectable weeks 8, 12 and 16.  Experiencing significant side effects but I'm still working 90% of the time.  I noticed no lasting side effects from the first txs using interferon and riba. I was still surfing at age 62 before I started this tx and I have scheduled a surfing trip to Central America 1 month after it is over.  
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Avatar universal
typos above should of course have read:  threads on LONG term interferon after effects;

and:  FAR too few seem to realize.....

Its those darned after effects at work!!!  can't even type properly anymore.....  lol
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Avatar universal
Unfortunately your situation is becoming more and more common.  The physical experience long after tx is finished is not well studied, and more and more people are finding that their ability to function normally and enjoy life is pretty much diminshed.  You might want to search the threads on ling term interferon after effects, and decide after reading them if your experience is similar.  We need feedback from people who have had problems, so that we can determine what is happening, what the patterns are, and how many out there are affected.  Faf too few seem to realize what is going on when they feel bad after tx, and none of the doctors have any answers.  They all just seem to wnat to believe that its not from the interferon.....which it most assuredly is!!!   Tell us more about your post-tx experiences please.

DoubleDose
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Avatar universal
I completed treatment I really do not  remeber the year it been a few yrs.
I was real sick when I did treatment and when i first got hep, I was told it was Hep non A-B for they did not know or have a name for it then.
I did treat for a year and it was just nasty.
Well I feel better then be on treat but feel now like I did before treat, and alot of more issues with health.
I have lost the real me, and Iam not to sure if I will get to find me again. I know Iam in there it just how do I get me to come out.
thanks
3311me
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Avatar universal
No doctor can tell you that you are 100% cured from Hep C. The testing for the virus is not advanced enough. Therefore insurances can deny you.
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Avatar universal
Hi. I am 51 and it was accidentally discovered that I have Hep C. Since I was in my early 20's I have experienced pain that docs could not explain. In my early 30's numbness and tingling in my fingers, then serious pain in fingers, wrists, arms, around shoulder blades, then in early 40's fatigue started to set in (I am or was one of those hyper people who slept 3 or 4 hours a night and then go, go, go), fatigue continued to get worse, in late 40's pain in my hips and down my outer thighs , so bad I could not even walk down my driveway, by now fatigue is so bad it is all I could do to stay awake at work as well. Brain fog set in during late 40's as well, now it is so bad so sometimes when I am driving to work for example I cannot remeber where I am, where I am going and become uncertain that I am even driving correctly. Sometimes I can't remeber my name or how to write a check. Right now I am sitting here wondering where I was going with all this, just remebered. There are many , many weird symptons, none of which could be explained. For almost a year now I have been going to Dr's to find out what the heck is going on. Finally, a positive RA but no physical signs of RA(twisted bones) led my rheumotologist to test for hep c - bingo. Yeah for me. I also tested positive for SLA but without the symptons of it which could mean lupus - my  mother has lupus.

I have been genotyped which per the new specialist means no way could the test for hep c be wrong, I have had a biopsy, stage 3 or 4 fibrosis. Oky , doky.

My reasons for doing treatment are in the hopes I can
1. get rid of the fatigue - I am now on concerta and dr keeps raising the dose every month until we get to the right amount to keep me going. Of all the problems I have right now the fatigue is the one I just cannot handle.

2. Get rid of the pain , it is spreading and getting more intense more rapidly, about 60% of body hurts 24/7.

3. I am going crazy, my memory is getting worse all the time. We are not talking about I forgot to pick up the milk on the way home from work. We are talking about , Who am I, Where am I, Where am I going, I hear your words but I don't know what those words mean.

4. I do not want to spread this damn disease to someone else. Here I want all of you to know I have not ever, ever used illegal drugs! Ever! And I am pissed that I have a disease because someone made a choice for themselves to use drugs and in the process made a choice for me as well!

I have been reading posts, all over the internet in regards to the treatment - as far as I can tell it is only going to make all my symptons worse.

Furthermore , the Dr's can't tell jack! They don't know a damn thing! Well maybe this or maybe that or I don't know. Tests they have run such as the SLA and RA - well they could be false positives, we get alot of false positive and false negatives. What the freaking hell! Why bother sticking needles into us then? On top of that I read that even liver biopsies are not all that accurate - a small part of your liver might be stage 3 while another part is stage 1.

How can I even believe that I have hep c when none of their damn tests are reliable?

Anyways, reading these posts and others as well I am thinking maybe I might just as well forget the treatment, get my Concerta up high enough I at least have energy again and live life to it's fullest for as long as I can. And make certain people know not to touch my blood under any circumstance.

One last note, I used to be an extremeley active person who now cant  get thru an 8 hour day , I have or had a high IQ - look at my spelling , look at my sentences! But per the medical society hep c, liver symptons won't happen till it's too late. Bull! All their crap is based on unreliable research - they do not have the answers to jack and cannot even stop to try figure things out on their own!

I can't believe this crap, I have had the flu once in my life, colds maybe 5 or 6 times, never had to go to damn dr's except when I had my kids. Sick time at work only used for other family members. Now, when I need them they really have no answers , my gasterologis or whatever you call them really could not give two hoots in .....!  We all die, it's a matter of how we want to go , I want to go out on my own 2 feet, not cripple, not in a assisted living facility.

Finally , summary, drs are not telling us about the reality of the treatment because they dont know, they dont know because once we do or don't clear the virus they send us on our merry way and dont care what happens after.



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Avatar universal
I just took my 12th shot my geno type is 2 the first test was undetected so far I've just had headache after the shot but my blood cells are low so they put me on iron pills and I have no energy I do take milk thistle everyone should take it really helps what I want to know after treatment will I fill better and get my energy back.
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