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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
63 Responses
Avatar universal
I successfully completed treatment in June 2006 and my tests were negative for the virus in January 2007.  The last three months of my treatment (Pegasys/Ribavirin)was an emotional hell because of my life circumstances.  Also, I was extremely fatigued so I slept alot.  I did not miss any work but could not tell anyone at work about my treatment. I still suffer depression (ie; suicide thoughts)at times and fight emotional negativity (life circumstances) so I do not know if the negativity can be blamed on the long term drug side effects?. I am usually a very positive person so being negative does not sit well with me. My energy is coming back because I walk two miles a day to deal with the stress.  Also, I pray, alot!  I do not know if this information helps you any.  Also, I took a variety of herbs during my treatment which my Doctor thought I was crazy for taking.  The two herbs that I highly recommend are Energy Kampo and Maximum Milk Thistle.
Avatar universal
First, welcome to the discussion group. No doctors here but we try and share our knowledge and experience as best we can.

Are you finished with treatment, or do you have 3 1/2 months left?

Side effects after treatment vary with the individual. Hopefully, you will start feeling better soon. The extreme tiredness you mention is not uncommon as the body needs an adjustment period after treatment. My doctor called it "interferon hangover".

If you've finished treatment have you had a viral load test since you've stopped the drugs?

Many of us get tested at one and three months after treatment to get an idea of how well we have done. I'm sure others will have some ideas on how you might feel better but at this point being patient is important.

All the best,

-- Jim
Avatar universal
i am only 17/24 so closer to done and don't know about after tx stuff.

i hope that your energy level increases I know it can be hard we expect that when tx is done we will be done with this stuff. walking will help increase energy level i also like yoga for stretching and control of breath helps to relax. don't have to be real stretchy bendy to benefit. poses can be modified.

i think that this may help you as well willow.  

I am sorry that you are feeling so down (understatement) please don't discount the depression. when we having something lingering and causing unexpected life changes it is and can lead to deep depression.

willow, i hope you are also talking to someone like a counselor or support group. talking help you with the depression.
Avatar universal
Thanks for the caring!  I have two very good friends that have listened to my problems and supported me.  Their support have been tremendous! You are right that group support is very important! I have made a contract with myself to take one day at a time!
Avatar universal
9 months post tx and i still feel fatigue that my dr says may be depression. i was very active and energetic before tx and know it is from tx. good luck. i know the drs do not give us all the possible consequense's of this poison.
Avatar universal
Thanks for sharing.  It sounds like we finished tx around the same time.  I'm a 1B and I treated for 8 months (an acute case that tapered off at the end).  I AM REALLY TIRED SINCE I GOT OFF THE MEDS.  I have also struggled with a lot of depression.  My Dr. thinks my brain chemistry hasn't evened out yet.  Thanks for posting.  You helped me feel not alone.  Good luck and I hope you post again! All my best, Aiuta  
Avatar universal
i am a student, unable to work it is basically all i can do right now. almost halfway through semester, i was on campus and went to disabled student center to obtain parking for any lot employee due to my medical status. this was earlier before i even saw your posts about after tx sx.  i am really worn out right now and it shows. many lack of sleep to complete final project on deadlines. look horrible. feel horrible.

they were so understanding, offered support groups. i said looking for career center, but otherwise i'm good (eyes welled up as i said it). just disappointed couldn't do the career change oct/nov when i had intended. (now worry about finances).

we talked a while and they also told me i may have to recover sx after tx that i should plan on taking it easy. i really am saddened that this might not be over when its over due to residual sx. due to what i am hearing on this site, and what i was told at the center.  

it is sad to know that just being done with medication won't necessarily return our lives to normal. but i hope so. week 17/24 so almost done. meet with dr.tomorrow to consult any questions i have about this issue.
179856 tn?1333550962
I just finished 72 weeks about 7 weeks ago and I ama starting to feel really fine.  I think I'll live.

I don't seem to have the same zest I used to but...I feel so much better than when I was on treatment that right now I feel great.  I don't know if it's just comparitive or not yet but...I hope that it keeps going.

I just have to find out about my Thyroid and hope to God that it comes back. That to me is the biggest side post tx I seem to have to deal with.
Avatar universal
There's a big trade off in treating this virus. It has saddened me to read this thread, as well as many other comments throughout the forum over the past month.  What I've learned in a short time at mh is treatment is important and worth it to those that have advanced damage whether they SVR or not.  It can give an SVR or allow more time.  

Many of us have had this disease for years showing no Hep C symptoms and minimal damage.  Until there is a better treatment available I have chosen to wait.  I'd planned to give my hepatologist my answer in my April appointment whether to  begin a shorter treatment for 1b, however my mind is set, and will give him my answer today.  I thank the honesty of the members here in describing their ability (or inability) to function during and after treatment and all that comes with that.  For that I am grateful.  I will get my yearly evaluations and reconsider this in a few years and continue to live life as before (before diagnosis).  Until then, I want to thank all for their kind responses to me personally and wish everyone the best in their personal decisions.  
Avatar universal
Thank you SO MUCH! Year of treatment ended Dec. 15th.  I go til June to complete the 6 months.  I con,t to be tested.  Hep C not detected since 3rd month. That,s when depression started.  Cried for NO REASON. Became angry and threw my favorite cup and broke my scales..That is just not me. upped the levapro.  My dr. is a head nodder  that is his yup to my complaints, but how many of our Drs have had hep c. Willowhorse my Dr. says there is no advantage to taking milk T. according to his view.jmjm thanks for sharing fact about "interferon hangover"  You said it..I,ve got it.Rosebud, my appetite is back big time and my scales were slammed to the floor.  I do know you are right.  I plan to get with the exercise program. thank you.bobbyullc.. poison.. I think it is rat poison, I heard. Yikes!! aiuta Thank you so much all of you.  This is the first time I have reached out.  I have lost friends.. could not keep up with them the lunches, mall etc. By nature, I am cheerful, and upbeat.  On this journey I have experienced depression and anger and I really do not care about going shopping or keeping up with my "friends" They have not supported me and said I was crazy to go through this.  I even developed a potty mouth much to my and eveyone elses surprise. blank so in so.  My husband has been my supportand we made this decision together. thank you
Avatar universal
i don't know the research and details about tx like some do. it seems that many/most of us do suffer from depressive sx during and after tx. this is common as many of you know during drug/alcohol withdrawal as well. it is possible, as i don't know for certain, that this tx, like drug/alcohol mess with our neurotransmitters, the brains feel good chemicals. their are drugs like ecstacy, that  within a few binges completely depletes these chemicals. and/or can permanently damage the brain.

in hopes that this tx does not cause permanent damage, at worst could lead to long time reliance on antidprs.

exercise really is the best way to increase well being and build up the feel good chemicals in our brains. it may be hard for many of of to think of any activity. but it only takes a little at a time to build up the activity level. personally i haven't been doing the recommended 30 minutes walking 3x week. but my home two level so do a lot of stair walking up and down.
Avatar universal
I am back.. kept thinking about you and want to let you know that people do really care ... you have company and although you can,t see this group of concerned individuals... by no way are you alone.  Whatever you experience with the depression... it is not you!  It is the Ribavirin... so life experiences can contribute to all that negativity.  Whatever you do , DO NOT GIVE UP THE BATTLE. My crying began the 3rd month into treatment and that is the typical time for the depression to start {altho' everyone is different}  I am not ashamed that my pills to counteract this have had to be increased . This post 6month period leaves me with 31/2 months to go and as I have said, I am tired and I fight depression.  Walking is a great idea, a little at a time... doing anything you enjoy, getting a manicure, pedicure or your hair done.  Be good to yourself.  I do not make appointments because I do not know if I can keep them... I call in the a.m. and see if they can fit me in that particular day.  The people know me and understand the circumstances.  This gives me a lift.  This message contains a hug and a prayer {that helps a lot} that you get better with each day. A friend.
Avatar universal
When I finished tx in 2/06 they told me I woud be "fine" in 2-4 weeks.  Didn't happen.  Then they said it might take 6 months, didn't happen.  Now they say it might take 18 months, but that I might never have the brain function I had "before".  I can't work, can't get permanent disability, at least I am trying a 3rd AD, but the goal is to get off all meds.  Difficulty driving, almost zero short term memory, now starting for the first time to have anxiety/panic attacks, mostly because the short term memory is so bad I panic because I KNOW I won't remember...don't know who said they were postponing tx, but good for you!  This is crazy, and now I am too! (a little humor?)

Oh, every doctor I see says "congratulations on your cure", and I say to myself, well, I can't say what I think...but if they had told me the side effects could be permanent I would have said no and rather let my liver kill me..or not.  I wish I had the energy or the knowledge to get the word out that the tx is not worth it, I know not everyone is affected like me, but they have no idea (maybe they do) who will have continued side effects.
Avatar universal
Hi, It is great reading your posts. I was diagnosed in 2001 with hep c type 1b. I was running a low grade temp almost every pm and was tired all the time. I went on the pegasy/ribavirin tx for 48 weeks. I'm continuing to improve still after completing the tx Nov of 2003. I'm on Social sec disability as my boss asked me to leave and apply for help'. I was a nurse. I'm tired, short term memory loss, I take anti dep  for the first time in my life. I'm 55. Hope I continue to get better so I can go back to work sometime. My Dr gave me adderal for my memory and focus problems but I want to treat my liver well, so I quit.. I believe I'm negative although haven't been checked since 2005.
1245725 tn?1268625764
Hello All,

I was relieved to read your threads on Post Treatment Sydrome, as my doctor is calling it.  I completed 44 weeks of Peg Intron/Interferon and Rhibasphere treatment for Hep C.  It was hell - incredible fatique, depression, insomnia, night sweats, ears ringing, brain fog, muscle and joint soreness, hair loss, you name it - I had it. All the side effects they tell you about and MORE.  The doctor and I finally agreed that rather than continue the last 4 weeks, that it was appropriate for me to stop. He also said I could expect the drugs to take a month or more to get out of my system. His partner had told me more like 6 months. The nurse practitioner that I saw bi-weekly said a month or more.  



It's been just over 3 months, and while I can tell some improvement - not as brain foggy - I am experiencing extreme muscle and joint pain, chronic fatigue, ears ringing, insomnia, and skin itching and breakouts.  It almost seems worse at this point, because when I was brain foggy during treatment, it didn't seem so bad. Now that I can think straight - this is horrible. They have me scheduled for Xrays of my knees and blood tests to check for arthritis, thyroid problems, etc. Other than that, there's not much they can do.  They call it Post Treatment Syndrome. They're not too sure why; they seem to think that it may unmask problems that may already be there, but they are not sure. So at this point, while the tests say I am Hep C free at present, I am hoping that in the future I will get better as far as the side effects post treatment.   Let me sign off by saying that my hair seems to be growing back just fine. Also that this is one hell of a cure.  I am sure that if it works or not, life will be better.



It was a very difficult decision to go through the treatment, as I felt absolutely fine - strong, healthy (in all other ways), full of energy, etc.  If I were to have to do it again, I would definitely have done things much differently, i.e. quit my job, taken a full year off, had my spouse take a year off with me. I can't say how important it was for me to have my wife help me through all of this. I feel for anyone who has to do this by themselves. Truly brutal. My sister went through cancer surgery and chemo last year far easier than this Hep C treatment has been. Bless her heart.  



Finding these Post Treatment posts has been a God send, as I see I am not the only person having problems after the fact.  I guess it's nice to know I'm not alone, although I certainly don't wish it on anybody. I guess all we can do is hope and pray that the treatment works for as many people as possible, and if not that it at least will alleviate any Hep C problems they may be having now or in the future. Again, thank you all for taking the time to post, as it does help. Trust me - it helped me!

Hecklerr



PS About dogs.....I have a Rhodesian Ridgeback and a Boston Terrier, and until a week ago, a French Bulldog (God rest his little doggie soul). I found that throughout the treatment and to this very day, particularly with my Rhodesian Ridgeback, my dogs made me feel better even in the roughest of times. I found that taking care of them, loving on them, having them make me laugh, them loving on me, was a great ointment to the symptoms of all this treatment. I cannot say how important it was for me to have them in my life. Don't get me wrong - I love my wife and she's been a great boon to me in all ways. But the goofiness of my dogs and total unconditional love has been a God send. ; -)





1351898 tn?1277196883
I have been Hep C free for 3 years ans still have extreme fatigue and panic attacks, have stayed on antidepressants and antianxiety meds for years. I also have severe memory lapses.........Will this last forever. Don't think ANYONE knows because this has not been studied for someones whole life span ..They didn't even know what Hep C was until 1990. So I don't think anyone knows !
Avatar universal
I am so happy to find this group and this thread.  I was afraid, since original post was in 2007 that it would no longer have input.  So glad to see the more recent comments.

OK, here's the story - -  I am a nurse and worked in local, rather rural hospital since 1985 as RN.  (CNA a couple years earlier while getting nursing degree).  In late '90's I noticed I was no longer feeling as fit as I normally did.  I had a short time when my eyes became jaundice.  I continued to work and worked especially hard and long on my property because my body seemed to be saying "do all you can, while you can".  By 2000, I was really feeling it at work.  But, thankfully, many of the staff RNs I worked with knew what I was dealing with by then and would offer help as they could.  It was difficult for me to be the needy one.  One night I realized I had totally forgotten one of my patients since the beginning of that busy shift.  I was no longer a safe nurse in my estimation.  So I took a medical leave in August 2000.
I did feel crappy.  All the fatigue and nausea, aches and pains, depression.  I explain it to others like having the flu for 4+ years straight.  Plus I was mid menopausal !  Of course I applied for disability.  But that was not forthcoming anytime soon - certainly not soon enough.
Happily I found a place that offered all treatment of that time in 2003-4 ~ free of charge.  (The long term income and health coverage had dried up by 2002)  Thankfully my MD offered her oversight management free of charge along with directing me to free clinic for monthly lab tests, so I was able to start treatment.
Basics:  Dx - Hepatitis C - genotype 2b - viral load 17 million when first diagnosed in 1998 or 99.  I strongly believe this was incidental/accidental infection while working as nurse, because I have no other risk factors.
The treatment was easy to do - but hard to take !  My blood levels hovered at just on critical for the last half.  So the 'yuk' I felt before was nothing compared to this.  But the viral load dropped and then disappeared.  As I recuperated from the impact of the treatment over months and months I would become depressed that I was not doing even better.  But my best friend would remind me "Do you remember the day that it took you 3 hours to brush your teeth?".  Everything was better than that day.

I wasn't ready to go back to work in 2004, but it was that or lose my home.  I felt [and feel] that I was aged 15-20 years in this whole process.  I knew I was no longer able to run the floors and do the mental and physical ability and acuity required in acute care.  Yet, I love nursing.  And it is the only thing I can do to support myself adequately on a part time basis.  So I went into assisted living as facility nurse.  It was a whole new arena of nursing care !  {Just this month I was replaced by a younger RN who could work a 40 + hour a week.  It apparently was not adequate that I completed all they required in 25hrs/wk with an 8 hr/wk assistant.  And now, unemployment is trying to determine if I am available for such, since I need too much rest between work days/hours.]         It is very frustrating.  I have worked since 1968 as primary or sole provider in my home(s) and family.  I am 61 now.  Who is going to hire me ?

OK, back to this thread ~~~  I am now 6 years out of treatment.  Am I better?  Yes, greatly !  But I am no longer the person I was 12 or 6 years ago.  My recent staff can attest that my short term memory is faulty. We all acknowledged that [joked about that], I made copious notes to remind myself and my wonderful staff made efforts to remind me.  (I think they would also attest that my nursing knowledge,skills, coordination, compassion and teaching were intact and still valuable.)    I live off of ibuprofen because my body aches/hurts all the time.  And the only thing that helps after 6 hours, is rest.  I still have tremendous fatigue mid afternoon, but responds well to rest to allow for sedentary work in the evenings.  I can still work on my garden, acreage, home, but 4-6 hours is the maximum on a day - generally 2-4 hours.  Heavy lifting is left to my sons.  Grandchildren are left to care for chickens and such.  I am 'old fashioned' and still iron nearly everything.  [I hate ironing!}  But when standing to do such chores (or other activities requiring standing for periods of time) my legs go numb and my back/hips hurt.

Conclusion:    I do not know if my current condition or ability is directly related to Hepatitis C or the treatment of that.  But I do know that I was always a healthy and active individual prior to that.  (When a 'Dr Strong' was ordered in hospital the supervisor would look up the hall and say "Mighty Mouse is here" when he saw me coming, and cancel further alert.)  I do know that I had always been an excellent student - completing high school (way back then) in 3 years and always taking advanced classes.  Even though of average intelligence, I always had exceptional grades.  Now, I find it difficult to learn anything new.  My grandkids program my cell phone.  God knows what my great-grandkids have to provide !
So ~ post Hep C treatment.   It has been better for me than not receiving treatment at all.  6 years after, however, I still am
                 easily fatigued
                 memory and, even, thought processes are effected
                 sight (visual acuity) is effected
                 body discomfort is constant and sometimes painful
                 depression (probably)
                 blood pressure up
                 weight up
                 prone to  every wee virus going around (poor immune system)
                 unavailable to health care insurance because of this 'pre-existing condition'

I hope this does not dissuade any of you from having treatment.  I t does seem to get better every year.  That does not mean it won't be tough.  If you don't trust or like your doctor - find a new one that is compassionate about your concerns.  I hate to say this, but be ready to face the problems of one that has a pre-existing condition.  If you have close ones around - tell them.  (I told my grandkids that they could hug and spend time with grandma, but if I was bleeding they were to stay away and contact help if I couldn't manage on my own.)

I would love to hear from others that have continued symptoms after successful treatment for Hep C.  It would make me feel better that I am not alone - - or just a wacko !

Avatar universal
WOW!!! I am so glad I found this thread. I'm post treatment of 9 months & am struggling, nice to know I'm not alone - not wishing this on anyone, just comforting. Thanks to everyone who shared here.
1240042 tn?1280337755
I am hoping that you continue to feel better. In your post you commented about you not being able to get health insurance because of a "pre-existing condition". If you are SVR, you no longer have the virus, you have been cured. You no long have HepC. If a insurance company has any questions, have them contact your doctor that you where in care of at the time you cleared the virus, he will send them a letter telling them that you have been cured. Ask for the letter so that you can make copies of it if ever needed.
Wishing you well,
Debi
Avatar universal
Thank you for your input.  It is surely not the picture or information that I got from Insurance company.  But I will address it as you suggest next time.
Thanks again
Joi
Avatar universal
Hi Joi510,
I'm responding to the last post from DebiS99:
I am nearing my 61st birthday.  I've been a trucker for the past 18 years, 14 of which were over-the-road.  It's a brutal lifestyle.  My wife has been a nurse for approximately 30 years; it's a brutal lifestyle too.  Two months ago I finished 48 weeeks of Pegasys/Copegus.  I contracted the virus in 1972 after returning from military duty in Southeast Asia.  I was diagnosed with HepC, genome 1a in 1998.  Everything I have learned since then from my own studying and interaction with doctors treating me is that no one is cured of HCV.  As in my case, while the virus is no longer detectable in my blood, it is still there, dormant.  I will always test positive for it because the antibodies will always be there!  

The post-treatment side-effects you describe are very familiar to me.  Although my immune system has recovered, for the most part, I don't feel well; sleeplessness, constant joint and muscle pain, frequent "brain foggy" days, itchiness all over and frequent rashes on my injection sites are all issues I hope to see soon in the rear-view mirrors.  But I don't know.  After recently joining this messsage forum myself, I've learned that everyone recovers differently.  Apparently, some folks carry these legacy problems for years.  Your story testifies to that!  I truly wish I could make it go away for you.  I was young, fresh out of the Air Force, and eager to find out why everybody was making such a big deal out of mainlining cocaine.  One time -- one time only..... so you see, I bought and paid for my burden (it certainly wasn't worth trying again), but you, you're a nurse; you did nothing to deserve HCV.  My wife does what you do!  As I pray for her, I will pray for you.  May God bless you and strengthen you through your struggle.
Avatar universal
I am really sorry for all the side effects that you experience.

I would like to let you know that you are incorrect about the virus being dormant in your body. It is very, very rare for the virus to reactivate after SVR is achieved. This virus-free state is very durable.

When antibodies are detected in your blood, it doesn't mean that you test positive for the virus. You test positive for antibodies, and it is a very different thing. Antibodies show that some time in the past you did have virus in your body. But if your viral RNA test is negative, there is no virus in your blood. We carry many antibodies-from infections and even from vaccinations. They don't cause any harm and pretty much have no clinical significance, though it is true that they stay in our blood for life.

While this can not ease your post-treatment symptoms, I hope that you feel better about getting rid of the virus. This is a great victory that many can only dream of. Hope you feel better soon.
1240042 tn?1280337755
Hi joi
The post that tashka sent you couldn't have said it better. After achieving SVR, you are cured of the virus. The antibodies of having HCV will show that you have had the virus at one time, but is no longer present.,The shell is there, but there is no nut inside.  I have a letter from Cedars-Sinai Medical Center stating that I am "cured of the Hepititis C virus. This letter was given to me by the Chief of Hepatology and Liver Transplantation, Dr. Fred Poordad, for the simple fact that, if and when I should need to apply for medical insurance , life insurance or for any other purpose I should need it for,  I could do so with no problems of having a existing condition of the Hep C virus.
Avatar universal
This is realy good information - everyone.  Thanks for sharing your experiences.  I'm 45 days off treatment.  First blood test came back clean.  I was a slow responder, so I had the pleasure of staying on tx for 60 weeks.   I also suffered from depression, and severe anxiety during treatment.  I lost 30 pounds due to no appetite and fatigue.  Was no fun!  The day I got off treatment I got a gym membership.  I saw it as a perfect time to start with very little body fat, and build my body back to a new/better me.  I still have to wait another 5 months to be declared "cured", but that's in the Lord's hands, not mine.  I just want to make the best of where I'm at now.  Fatigue is a huge factor, but I am finding the more I do, the better I feel.  Peace and healing to all.
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