post hep c treatment side effects

[lostpass]

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

[willowhorse]

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.

[jmjm530]

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

[rosebud57]

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.

[willowhorse]

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!

[bobbyullc]

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.

[aiuta]

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  

[rosebud57]

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.

[SandyBreeze]

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.  

[lostpass]

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

[nygirl7]

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.

[rosebud57]

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.

[lostpass]

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.

[zoomom]

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.

[Gail33]

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.