I took peg interferon and ribvirin for 48 weeks from 2002 to 2003. I was born with the hep C and transmitted it to my son. My mom almost died and had a life saving liver transplant in 2000. It scared me tremendously for her but also for myself. In addition,
I was in dentistry and left like I had leprosy. I knew in my heart that I desperately needed to kill this virus. I will say interferon has been the worst decision I have ever made in my life. I have suffered from extremely painful depression, anxiety, fatigue, hypothyroidism, food intolerance, and hair loss ever since. I turned jewelry black while I was taking the injections and perfume smelled weird on me. That is the least of my worries though.
My quality of life has been pure hell due to my mental well being. I would have rather have died from Hep C and had a short happy life than to suffer this anguish. If I received 100 million dollars for taking interferon I would have declined in a heart beat. I've never been the same. I lost my personality, joy, ambition , intelligence, energy...basically my whole essence of what it means to be alive and thrive. Now, I just exist in misery. I have tried practically everything to try and get help to no avail. Doctors and psychiatrists seem to think its all in my head. All I know is that I used to be super happy, confident, ambitious and fun. I have had to pretend to try to be a fraction of who I used to be. The mask is hard to carry. The pain of life has been beyond hard for 19 years. How could they have ever given this medicine to any human being? This is truly hell on earth.
I haven't posted anything on here in probably a year, year and half. I was just skimming thru my back up of emails. And saw your post. I'm afraid I don't have any answers for you. Sorry, but reading your post reminded me. That there's thousands,tens of thousands, maybe even hundreds of thousands of us. All suffering the same existence. The one thing that seems to be the overwhelming thing we all say. Is had we known then, what we know now. We never would have taken the stuff. Rather to die of the hep c. Interferon and rebotol totally blew my candle out. Not even the same man I was before. People might see me appear to be happy. But they don't know the misery behind the smile. I keep on going tho. Hopeful that I can come across some natural medicine to help me. And also hopeful that some attorney someday will look at all the cases of people who's lives were ruined. And sue the s-it out of those responsible for using us as guinea pigs. Hope you find some help. Alan.
I believe we have all been left the legacy of CFS/ME post Interferon/Rabivirin treatment. There needs to be an investigation and compensation from the drug company's
Hello I have read your posts and as you live here in the UK I wondered if you had ever been in contact with the Hepatitis C Trust about your situation?
I went thru treatment with intron A in 95 and then again with ribavirin and peg interferon in 2010. I'm SVR now and clear but this year is the first year I've felt some (but not much) improvement of my brain fog, malaise, bone aches, joint aches, and everything else. I was tested for everything under the sun and was finally diagnosed with fibromyalgia and myofacial pain syndrome. I spoke with my gastroenterologist doc and my family doc about long term side effects. They said there was no evidence of any documented. I showed my gastro doc forum after forum of people who had my symptoms and said I'm not going crazy and how do I get someone to study this? I still dont feel like i did prior to treatment and have widespread pain. I often wonder if my symptoms are from fibromyalgia or from the interferon? There are so many hep forums where 50% of the people complain of long term problems that are all similar. Oh ya.. my eyesight is also shot now too. Happened rapidly the first 3 years after treatment. Just sayin. I hope we make enough noise to make a difference and get someone to HEAR us. Thanks!
I found out I had Hepatitis C in 1997 and I refused treatment because I was at Stage 1 Mild. Ten years later 2007I had a biopsy and I was at Stage 4 cirrhosis. I started treatment with interferon and ribavirin and after 13 weeks the virus was still detected. Then I tried treatment again with the same medication and went 26 weeks the virus was still detected. In 2011 I tried the same medication with Televir and after 4 weeks I was finally undetected. I took the Televir for 10 weeks and stayed on the interferon and ribavirin for 38 weeks. While on the last treatment they discovered that I had cancer in my liver. It was small and they took it out and immediately but me on the transplant list. I got my new liver July 1st 2012 and I quit the treatment at 38 weeks. It’s been 8 years since my transplant and I feel fortunate to be alive. I do have body pain and they called it fibromyalgia and put me on a different antidepressant called Cymbalta at 60 mg which really helped. I’ve now gotten it down to 30mg. As far as brain fog I definitely have that. I had fatigue for years but that has gotten a little better. I don’t like these side affects and many people don’t understand it but I’m very happy to be alive and would do it all over again. Do I wish I could have waited for a better treatment, yes definitely but I’m still here and I’m happy about that.
Y’all are gonna find this hard to believe… but from 2000 to 2006 I had 550 plus interferon treatments. Started with peg then did the once a week deal a couple times for a year. Then in 2005 I did the every day for a year. For patients who had type one A
I have a severe case of chemo Brain. Found out in 2013. I’d rather loose both legs and arms than deal I th the mental anguish I deal with every day.
You can take every crazy side effect and symptom people have and x it by 50.
I’m whupped.
I feel like there needs to be. I was hoping to find more research on the subject since so many people I know who did the treatment are having similar long term difficulty. I've even looked for studies that need participants. How can we advocate for ourselves and others in this situation? I think the pharmaceutical companies are afraid to address it because they're afraid of lawsuits. I don't want to sue anyone, I just want some validation that I'm not making this up! And maybe some support and understanding.
Anyone else feel this way?
I just found this website forum. I felt like I have been going in sane with my declining health and consulting with doctor after doctor that look at me like I am a hypochondriac. The fact that so many other souls have suffered after interferon therapy and clinical trials, there needs to be accountability for this. Has any class action lawsuits been started? My life has been ruined. Numerous surgeries to fuse soft bones in my feet, cognitive decline, many irreversible back and neck issues, personality changes, depression, anxiety, chronic myofascial pain, headaches, massive washed out feelings of fatigue, bone decline in my gums, blurry eyesight, electric shocks in my ear area, heart rythym problems, forgetting where I am when driving, osteopenia, gastric problems you name it. I began disability in June 2020. I was in a clinical trial for 12 months of daily ribovirin and interferon injections 3x a week. Started in July 1998 through July 1999. I have absolutely no quality of life, no joy or drive to persevere. I use to be a professional in the job world and have been reduced to a pathetic existence at 58. I lost my dream job due to poor performance and every job I tried after that. I can't deal with people at all, have rage and am always irritatable and anxious. I actually am relieved that it's not all in my head, thanks for listening and I look forward to more information and discussion.
I have most of the issues you describe. I was diagnosed with Hep c in the middle 90's and started Interferon/ ribavirin for more than 6 months and was non-detectable. Because of the side affects I chose to take my chanced and the doctor stopped treatment. It returned and I was back on the treatment for a year. I have been Hep c free for more than 20 years but have always had side effects. I have bone issues, memory problems, I have had cirrhosis, eye issues and many others. I never put 2 and 2 together until I saw all the posts about people with on going problems. Everything I read was me. I see lots of lawsuit's but I only have seen them from 2016 and before. I feel I'm owed something for what I have gone through.
Hello @bicool and @jenlyn and welcome to Mayo Clinic Connect.
@jenlyn this is the only current discussion on Interferon. If you feel what you are looking for isn't being discussed here, you may consider starting another discussion. Perhaps you even scroll backward to read the previous posts if of interest.
@bicool I am sorry you have been struggling for so many years and am glad you have found a community of others who may be able to provide you support as you have identified with others' descriptions of what they have been going through as well.
What have you shared with your doctor(s) regarding these symptoms and what information/recommendations have you received in return?
Hello @bicool and @jenlyn and welcome to Mayo Clinic Connect.
@jenlyn this is the only current discussion on Interferon. If you feel what you are looking for isn't being discussed here, you may consider starting another discussion. Perhaps you even scroll backward to read the previous posts if of interest.
@bicool I am sorry you have been struggling for so many years and am glad you have found a community of others who may be able to provide you support as you have identified with others' descriptions of what they have been going through as well.
What have you shared with your doctor(s) regarding these symptoms and what information/recommendations have you received in return?
I just found that a lot of my problems seem to stem from my hepc treatment. Prior my doctor and I have looked it as aging. When I started reading the conversations from 2014 and 2016 I realized most of my problems are the same as other hepc patients.
I have most of the issues you describe. I was diagnosed with Hep c in the middle 90's and started Interferon/ ribavirin for more than 6 months and was non-detectable. Because of the side affects I chose to take my chanced and the doctor stopped treatment. It returned and I was back on the treatment for a year. I have been Hep c free for more than 20 years but have always had side effects. I have bone issues, memory problems, I have had cirrhosis, eye issues and many others. I never put 2 and 2 together until I saw all the posts about people with on going problems. Everything I read was me. I see lots of lawsuit's but I only have seen them from 2016 and before. I feel I'm owed something for what I have gone through.
Yes that sounds so similar to what I and other people I know are experiencing. So many of us have never been quite the same since treatment. And since many of us got treatment as we were getting older, appreoaching menopause (us women anyway) docs seem to brush it off as ageing. You are not alone!
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I haven't posted anything on here in probably a year, year and half. I was just skimming thru my back up of emails. And saw your post. I'm afraid I don't have any answers for you. Sorry, but reading your post reminded me. That there's thousands,tens of thousands, maybe even hundreds of thousands of us. All suffering the same existence. The one thing that seems to be the overwhelming thing we all say. Is had we known then, what we know now. We never would have taken the stuff. Rather to die of the hep c. Interferon and rebotol totally blew my candle out. Not even the same man I was before. People might see me appear to be happy. But they don't know the misery behind the smile. I keep on going tho. Hopeful that I can come across some natural medicine to help me. And also hopeful that some attorney someday will look at all the cases of people who's lives were ruined. And sue the s-it out of those responsible for using us as guinea pigs. Hope you find some help. Alan.
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Hug
2 ReactionsHello I have read your posts and as you live here in the UK I wondered if you had ever been in contact with the Hepatitis C Trust about your situation?
I found out I had Hepatitis C in 1997 and I refused treatment because I was at Stage 1 Mild. Ten years later 2007I had a biopsy and I was at Stage 4 cirrhosis. I started treatment with interferon and ribavirin and after 13 weeks the virus was still detected. Then I tried treatment again with the same medication and went 26 weeks the virus was still detected. In 2011 I tried the same medication with Televir and after 4 weeks I was finally undetected. I took the Televir for 10 weeks and stayed on the interferon and ribavirin for 38 weeks. While on the last treatment they discovered that I had cancer in my liver. It was small and they took it out and immediately but me on the transplant list. I got my new liver July 1st 2012 and I quit the treatment at 38 weeks. It’s been 8 years since my transplant and I feel fortunate to be alive. I do have body pain and they called it fibromyalgia and put me on a different antidepressant called Cymbalta at 60 mg which really helped. I’ve now gotten it down to 30mg. As far as brain fog I definitely have that. I had fatigue for years but that has gotten a little better. I don’t like these side affects and many people don’t understand it but I’m very happy to be alive and would do it all over again. Do I wish I could have waited for a better treatment, yes definitely but I’m still here and I’m happy about that.
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2 ReactionsHi are there any current chats about Interferon?
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1 ReactionI feel like there needs to be. I was hoping to find more research on the subject since so many people I know who did the treatment are having similar long term difficulty. I've even looked for studies that need participants. How can we advocate for ourselves and others in this situation? I think the pharmaceutical companies are afraid to address it because they're afraid of lawsuits. I don't want to sue anyone, I just want some validation that I'm not making this up! And maybe some support and understanding.
Anyone else feel this way?
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Like -
Helpful -
Hug
1 ReactionI have most of the issues you describe. I was diagnosed with Hep c in the middle 90's and started Interferon/ ribavirin for more than 6 months and was non-detectable. Because of the side affects I chose to take my chanced and the doctor stopped treatment. It returned and I was back on the treatment for a year. I have been Hep c free for more than 20 years but have always had side effects. I have bone issues, memory problems, I have had cirrhosis, eye issues and many others. I never put 2 and 2 together until I saw all the posts about people with on going problems. Everything I read was me. I see lots of lawsuit's but I only have seen them from 2016 and before. I feel I'm owed something for what I have gone through.
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Like -
Helpful -
Hug
2 ReactionsHello @bicool and @jenlyn and welcome to Mayo Clinic Connect.
@jenlyn this is the only current discussion on Interferon. If you feel what you are looking for isn't being discussed here, you may consider starting another discussion. Perhaps you even scroll backward to read the previous posts if of interest.
@bicool I am sorry you have been struggling for so many years and am glad you have found a community of others who may be able to provide you support as you have identified with others' descriptions of what they have been going through as well.
What have you shared with your doctor(s) regarding these symptoms and what information/recommendations have you received in return?
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Like -
Helpful -
Hug
1 ReactionI just found that a lot of my problems seem to stem from my hepc treatment. Prior my doctor and I have looked it as aging. When I started reading the conversations from 2014 and 2016 I realized most of my problems are the same as other hepc patients.
Hello Idestella did I see you live here in the UK? If so have you spoken to the charity the Hepatitis C Trust?
Yes that sounds so similar to what I and other people I know are experiencing. So many of us have never been quite the same since treatment. And since many of us got treatment as we were getting older, appreoaching menopause (us women anyway) docs seem to brush it off as ageing. You are not alone!
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Helpful -
Hug
1 Reaction