Hepatitis C Community
post hep c treatment side effects
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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
Related Discussions
61 Comments Post a Comment
Blank
Avatar_n_tn
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.
Blank
Avatar_m_tn
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
Blank
Avatar_f_tn
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.
Blank
Avatar_n_tn
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!
Blank
Avatar_n_tn
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.
Blank
Avatar_n_tn
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  
Blank
Avatar_f_tn
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.
Blank
Avatar_n_tn
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.  
Blank
Avatar_f_tn
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
Blank
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.
Blank
Avatar_f_tn
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.
Blank
Avatar_f_tn
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.
Blank
Avatar_n_tn
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.
Blank
Avatar_n_tn
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.
Blank
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. ; -)





Blank
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 !
Blank
Avatar_f_tn
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 !

Blank
Avatar_f_tn
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.
Blank
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
Blank
Avatar_f_tn
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
Blank
Avatar_m_tn
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.
Blank
Avatar_f_tn
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.
Blank
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 (hepatitis) 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.
Blank
Avatar_f_tn
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.
Blank
Avatar_f_tn
I know this is long but I type really fast, or fast enough, and I think fast too, lol! So if anyone doesnt feel like reading I understand fully. Maybe I shouldnt be reading all of this since I dont even know for sure that I have the virus, other than ive tested positive for the antibodies, all I know is its really scary and hearing alot of this is extremely scary. Whats scares me more than anything is the anxiety that people are talking about. Ive dealt with that severely for yrs, , and ive felt the emotional rollercoaster of many different types of severe withdrawels (depression) for extended periods of time for different reasons, but the main reason I was on drugs was to feel normal and help me get rid of the ANXIETY that I couldnt seem to get ahold of. I love life, always have, very active and full of life as long as I have a strong hold on my anxiety. But it depresses me when I feel bad and cant live my life the way I want, feeling "WELL:" Been there already!! Does that sound like what you guys go through? Why are you depressed, or do you know what makes you sad? Is it cause you feel bad and cant do what you really want? Or is it all one big *** confusion and you cant really pinpoint anything? Does it help at all to think in the back of your head thats its the sx thats making you depressed and that thats the only reason you are depressed? And why the anxiety and what is there to be nervous about? What I mean is, what is it about the treatment that can cause you to be severly nervous inside "ANXIETY" ? I hope like heck no one gets mad at me for trying to break it all down and im just trying to get a look inside so to speak. And why cant the docs give benzos if they know people are going through tx are going through living hell? And thats exactly what it sounds like! Benzos are zanex, valium, klonopin, ativan. They cant do that much damage to the liver to make it NOT POSSIBLE and yet ive heard no one say they got anything to help other than anti depressants. I guess BENZODIAZAPINES can be anti depressants but usually its other thangs, not benzos. I really dont think that I can mentally handle another round of horrible anxiety, depression maybe, but not anxiety. Im dead serious and no pun intended! My doc today, said my cholesterol is really good so evidently last time the test was wrong bout that part. So thats a good thing. Also doc said my liver enzymes are like 70 and 40, samething that the last test said, so this doc today referred me to another hep doc that will be much better I think than the last one I was referred to. But before I told her bout the positive antibody test, thats exactly what she was gonna do next, test me, so I guess signs are pointing in that direction and all I can do at this point is pray and hope there is some reason for the elevation, even though slight, still elevation, cause its not my cholesterol. I know this is a great place to complain and vent and all that but from the outside of that world looking in because I may have no choice whatsoever is unexplainable and I admire all you brave brave people so much that know all of this goin in and still choice to treat, kick the disease's *** and your own all at the sametime. Its amazing, I just defiantely dont know if im that brave. I have a lil PTSD with many things, but strange meds is also one of them because of adverse reactions in the past to some of them, one that almost killed me, and the others just felt that way, so that anxiety combined with all the other, I maynot can even get one of them pills in my mouth, lol! What would a doctor say about that, if he thought that I actually couldnt get myself to take the meds due to some PTSD in the past? Just opinions is all im askin for and only if anyone wants to even bother with any of this at all. Like i said, I hope that im not saying anything that is out of line or wrong in anyway, im learning and absolutley amazed with all of you warriors!! Im one of the bravest people in the world when it comes to some things, like fighting, or standing up for what is right no matter what the cost, but to have to take medicines that will make me sick I think will be something that I just dont know if I can do. Ive never really had to sit down and think about it till now, not like this. :(
Blank
317787_tn?1373214989
Just want to say hello and say that while some can take benzos, for some people the anxiety is overwhelming and you have to choose to be calm or drive to work
Like U I said, well I am already anxious, how could I get worse?  I think the tx exaggerates and exacerbates a lot of things, more later keyboard is not wking
D
Blank
Avatar_m_tn
I have been very lucky- I guess- I am a teacher Itook my injections on Thur -took off Fri.  I just finished 6 mos. treatment this week.  I had 3b.  Virus count was  after the first 30 days.  I take Liver Care, Milk Thistle,Vit C, Vit E, VitBs,and Rhodiola.  I have not had to take any persctiptions.  I had taken Rhodiola  (an herb) after my Father passed.  It helped-I had forgotten about it.  Several mos ago when I got tired of being depressed I started taking it again---boy does it help.  To anyone having problems i would suggest trying it.
Blank
Avatar_n_tn
I'm very glad to have found this thread. After reading the Oct. 2010 post by joi510, I finally see for sure that I really haven't lost it.  I finished 2 years of tx (intronA and then Rebetron) in 2000.  Aside from feeling like I aged 10 to years in a short time, I lost myself.  I have never been the same person since.  With the long term side effects, everything about me is different.  Cognitively I am unable to do my job (RHIT) and the fatique and malasie when I can function make it too short term.  I don't want to repeat everything that joi has said because I suffer from all the same long term effects.  I feel the symptoms of most a bit more extreme but maybe that is just me or the length of time I did the tx.  I went on disability due
to the side effects while I was on tx.  Now after trying to work for the last 10 years I am applying again.  I have had a very difficult time facing up to the fact that I am as good as I am going to ever be and that I need to accept where I am, who I am and what my health is now.  This has been very difficult.
Blank
1748949_tn?1318291037
I wish i knew what to say to you all with all the good news AND bad news but I really dont know what to say cause I havent started my treatments yet. But I will be tomorrow at 1pm Aug 12, 2011 and Im really kinda scared and wish I could comfort or give some advice to you all. I hope we ALL kick this disease and we have long healthy joyful lives. God Bless you all.
Blank
Avatar_f_tn
Just found this thread while starting to research post-tx experiences.
I'm in a clinical trial with 1 month to go before treatment ends. (I'm genotype 3a, 52 yr-old female, menopausal; diagnosed in 2001). Have a number of friends who have gone thru' treatment, some more than once before they were successful.
I noted that treatment options improved over the years so, since my liver function #s were pretty good, and my health/energy was decent I decided to wait on going thru' treatment myself. Plus, there were other complications in my life that kept me from doing it 'til this year. Now, a month away from completion & from some of the comments here, I'm getting nervous about long-term post-treatment life.

HCV treatment is sure not for sissies!! If patients were really given the low-down on treatment/post treatment, then maybe fewer would go on it. But we could say that about having kids, too. And yet, humanity still continues to reproduce, despite knowing the pros/cons of being a parent! ;-)
I've had most of all the usual sx, but haven't given much attention to depression. I knew I wasn't going to take antidepressants anyway, as I had a horrible experience on them previously. I will definitely look into treating it with more 'natural' solutions (exercise, rhodiola, St John's Wort, etc) rather than get stuck on the AD-hamster wheel again. (I'm not focused on depression currently due to life circumstances: my mother passed away a few weeks ago, so I attribute any current depression to that. If anything, I have more rage/mood swings on the rbv/ifn...and it's only occasional, not constant and it's manageable).  I also have rheumatoid arthritis (very mild), which is affected by the hcv and I'm sure a lot of my achiness is related to the RA, too. I think the rashes and lately, what seems like eczema (or it's a candida/yeast overgrowth; I have an excellent cleanse but I'm waiting 'til I finish the meds before doing it)  has been the most frustrating.  And the all-pervasive fatigue, which nobody really gets unless they've gone thru' this (tho' my friend with MS gets it! so we support each other with our sypmtom-***** sessions!)

At my appt today the nurse informed me it should take about 2 weeks for the meds (interferon/ribavirin) to clear once treatment finishes next month ... but all the anecdotal information I've run across certainly sounds like it can take much longer. I do wonder if the long-term continued sx some people have reported are due to complications created by other medications (like antidepressants).

Anyway, it's been really good to find this info. I am keeping fingers crossed that post-tx syndrome will not be drawn out. And that my original intention for embarking on this journey will not have been in vain. As crappy as I've felt these last few months, a lifetime as a liver transplant recipient (provided one gets a donated liver!) might not be a better alternative.
Wishing all the best to everyone else. And Wistuk, stay optimistic that this will be a good experience for you.
I'm sure hoping my brain (short term memory) comes back!  Thanks for sharing!!
Blank
1752948_tn?1394030486
Well that certainly gives one pause for thought. If I am eligible I am probably due to begin triple tx in new year. I am seeing an MD/Naturopath as well as my hep Dr. Suffice it to say the advice is dramatically different. The post treatment side effects is something I have not given much consideration to , but will now certainly be a factor in my decision making process.
I read alot of courage on these threads. None more than this one. It is a helluva way to find out what you are made of. Yet invariably I am filled with admiration and pride for all here who are making  and living with the results of hard choices.  
Blank
1752948_tn?1394030486
Sorry to double post but has anyone here chosen not to treat and to take a more naturalistic route. ie A-lipoic acid, Silymarin ( milk thistle) m selenium, mega dose vit C, zinc/copper blend etc etc. No cure obviously. A quality of life decision.
Blank
Avatar_n_tn
I spent thousands of dollars on herbal treatments to avoid the traditional treatment and overall it made me feel better, but it did not make the virus go away.  I am currently on the traditional treatment, 12 weeks in and have 12 more weeks to go.  Will be back on herbs post treatment to help me feel better. keeping a blog about my treatment at.  www.dreamingofseas365.blogspot.com  best of luck to all you have been diagnosed with this hep c monster.
Blank
Avatar_f_tn
I have been off interferon for 1year come oct. I wason it for 76 weeks,Im still suffering from depression and the lost of life it self.I go no where and just cant seem t get it together.Iam still not working because i never no if i wake up if its going to bea good day or another bad one.My docter wants me on more anti depressants and i wont take them just scard to take anyhing.What to do anyone no is this how its going to be the rest of my life or what?Iam mad i ever went on this stuff i would of rather not.Cant work depressedas all hell and talk to no one.
Blank
Avatar_f_tn
Sorry, I meant to add this a few days back, but no chance 'til today.

I wanted to update that 2 days after my first post above, my hepatologist's  nurse notified me to go off the IFN & RBV immediately. My hemoglobin had dropped too low for the study, and I was to only take the study drug.

The first week I was off the meds I was still pretty lethargic and feeling the usual sides, but by the middle of the 2nd week I was definitely feeling much improved & more energetic. I still felt spent by the late afternoon, but I noticed little things, like being able to go upstairs without pausing to catch my breath.
By middle of last week I called her to see if I was going to continue with the meds before the study terminated. I was starting to feel so much better that if I was going back on, I'd prefer sooner than later, since I knew what awaited me. I re-started meds last Friday (so I was off meds Aug. 26-Sept.9).

This brief respite from tx made me feel confident that I made the right decision (to do treatment at this time). Next Tuesday, Sept.20 is my 'last day' for treatment .. with a f/up appt mid-Oct.
I've planned post-treatment activities, some which have been mentioned by previous posters (like adding simple activity, like walking or yoga/tai chi) and I'll include more 'natural' therapies (herbals/vitamins/nutrionals/therapists) to help cleanse tx side effects. But I am definitely not interested in feeling wasted, depressed or negative months from now and regretting this experience. Many in my circle who have gone thru' tx have given me lots of positive feedback, and I plan to adopt their attitude.  I'm very optimistic about the final outcome.
I just had to share that I believe there will be a very bright light at the end of this long tunnel! I wish the best of luck to everyone else!
Blank
Avatar_f_tn
Before treatment I was pretty careful with my nutrion, and took lots of herbals/vitamins (milk thistle/msm/lysine/good multis, etc) I'm careful about the manufacturers of products, too .. I have friends in the health food industry so I get their feedback about items I'm interested in. I'm also a big supporter of chiro/accupuncture/massage/reiki, etc...  Once I was diagnosed hcv (11 years ago) I always tried to educate myself,  be responsible and support my liver/system as positively as possible.

While I've been in a study I chose to simplify things and only took the treatment medications (triple tx: study drug/Cyclosporine, interferon & ribavirin).  I took recommended OTC meds to manage pain/discomfort -- and took as minimally as possible. I even halved my tylenols so I wasn't taking as much, and it worked just fine. I generally am not a 'pill-popper' so it was an adjustment, but after a couple weeks I figured I didn't need to be a hero about my aches and pains.

Once I'm done tx, I'll give myself a couple weeks to 'clear' and then resume using more natural methods to further cleanse my system.
Hope this helps, and good luck with your journey!
Blank
Avatar_m_tn
This is my first and possibly my only post here or elsewhere, I'll explain why in a while.
It seems that you and I are finishing treatment at about the same time.
I have to agree that positivity in this seems absolutely key, and has been the reason that I have avoided these message boards or support forums throughout my trreatment. It seems to me (in my wierd logic) that once you admit to yourself that you need help with this thing, or that actually you are struggling to cope with it, or that it is seriously adversely affecting your life and the way you feel; you're doomed to suffer all the awful stuff that people have described. Now don't get me wrong, I'm not saying that this support thing is anything but a helpful tool for those who need it, but for me it has been essential fort me to get through this on my own. Over the last 9 months the only people I have told have been my wife and my son, I have taken no time off work, I have continued to cycle 20 miles every day and go to the gym 5 days a week as well as go climbing once per week. The only change that i have made to my lifestyle is that I have had to give up surfing for a while (gutted) but I feel it just isn't worth the risk of picking up aditional infection from our polluted waters.
I have only spoken twice to my wife about feeling lousy, though in actual fact I have felt pretty ill for quite some time, and despite feeling absolutely exhausted most of the time, and weeping like a girl at TV adverts (which my wife and son find highly amusing, which helps) have forced myself to carry on with life as close to normally as I can, and for me this has helped.
There are changes that I have had to make like writing more stuff down at work because of memory lapses, and going to bed a little earlier when I can, and completely giving up drinking (easy) but really I have to consider myself really fortunate in as much as the side effects I have suffered seem exceptionally mild in comparison to those of others.
I need to say that my nurse (Sandra) has been an absolute angel, and offered as much support as I could ever want from anyone, though I have resisted the temptation to take her up on any of this outside of the usual appointments, for the reasons above ie the need to continue to feel mentally strong and self reliant and in controll of my own life.
So my state at present: I was diagnosed with genotype 2 in January 2011, commenced 24 week treatment of Peginteferon/Ribavirin in April, undetectable at 4 weeks, and again at 12 weeks, just completed treatment and awaiting results from latest tests. Fingers crossed.
I hope that nobody takes this the wrong way and feels that I may be somehow diminishing their awful experiences on this treatment, but I feel that anyone reading this thread might like to hear of someone who's experience hasn't been as terrible as he thought it was going to be, and I was dreading it!




Blank
Avatar_m_tn
Sorry all just re read my post and realised that I'd kind of lost the thread a bit half way through (mmm sound familiar anyone?)
Anyway the point I was trying to make is that with a positive attitude and a refusal to give in to whatever it throws at you, it is (or was for me) doable and bearable.
The days that I couldn't be bothered to get up early and go to the gym or cycling were by far my worst days, the mental vaguenss and cognitive impairments on those days were pretty awful, so I made sure that there weren't many days that I missed.
I sincerely wish anyone going through this all the love and success, and hope that your symptoms and side effects remain as managable as mine have been.
Peace!
Blank
Avatar_n_tn
Hey joi510 - Make sure you get your thyroid function checked specifically, I think a lot of the symptoms you describe might be due to low thyroid function.  Maybe, maybe not but it's worth a shot.  I was having a lot of the same symptoms (excessive tiredness etc) at a very serious level until my PCP finally figured out I had low thyroid function and was put on 50mcg synthroid (thyroid supplements) - a small pill every morning with no side effects I can tell other than making me feel better and higher energy (also relatively inexpensive, about $30/month for 30 pills even for the name brand; generic is only about $5).  I also am in week 20 of 24 week treatment pgm for hep c with interferon and ribavirin - yay, only 4 more weeks!  In my case, I started the thyroid supplements 18 months before starting the hep c treatments and the thyroid function has remained constant during the treatment.  But I know I would be feeling a lot more tired without the thyroid supplements.  Make sure you have it checked out if you haven't to date, and best of luck in general.
Blank
Avatar_f_tn
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.
Blank
Avatar_m_tn
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.



Blank
Avatar_m_tn
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.
Blank
Avatar_m_tn
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
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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.  
Blank
Avatar_f_tn
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.
Blank
Avatar_n_tn
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.
Blank
Avatar_m_tn
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.
Blank
Avatar_f_tn
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.....
Blank
Avatar_f_tn
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! :-)
Blank
Avatar_f_tn
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.
Blank
Avatar_m_tn
    
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
Blank
Avatar_f_tn
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
Blank
Avatar_f_tn
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
Blank
Avatar_f_tn
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
Blank
Avatar_f_tn
Hep c treatment screwed up my life
Blank
317787_tn?1373214989
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
Blank
Avatar_f_tn
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.  
Blank
Avatar_f_tn
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????
Blank
1815939_tn?1377995399
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.

Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Hepatitis Answerers
179856_tn?1333550962
Blank
nygirl7
Planet Earth, CT
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
446474_tn?1404424777
Blank
HectorSF
CA
683231_tn?1415953923
Blank
flyinlynn
Auburn, WA
766573_tn?1365170066
Blank
Idyllic
Avatar_f_tn
Blank
susan400
FL