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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
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
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
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
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
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
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.
I also tested positive for RA about 5 years ago (a few years after getting my hcv diagnosis) .. I've had intermittent pains in my hands since my mid-30s but since it went away, and didn't really interfere with my life I didn't do anything about it. My rheumatologist explained the RA and Hcv exacerbate each other. And, due to my liver, he was limited to what he could give me. Since my symptoms were so mild I never took anything. Now that I'm done with hcv I'm noticing more RA pains, which will likely get worse - but, hey, I'm in my mid-50s also....no more a spring chicken! I am also a realist. Just offering this, so you can know that it could be the hep that's adding to the RA symptoms.
Wish you some comfort and healing in the days ahead.
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