After 30 Years with hep C, I now live with Interferon Syndrome after treatment

By robbyd

1 min read

I was given 5 liters of blood because of a car wreck in 1974, I was 18 at the time. In 1975 they diagnosed me with non A non B hepatitis. A few years later it was given the name hepatitis C. In 2007 I was at stage 3-4 cirrhosis and needed to start on a program. The only remedies available was the interferon and ribavirin combo. I took the combo for the 48 weeks of treatment. While on treatment, I had suffered through many symptoms, most of the side effects which left me with permanent side effects.

Side effects from treatment remain today

My saga starts in the second month of treatment, where my hair started to fall out. By the 3rd month I was completely bald and no longer grew any body hair. This was caused by the drug combo which effected my auto immune system.

I was told that the drug combo caused my Lupus as well as a compromised immune system. The most interesting side effect that started to effect me 13 years after treatment is Post Interferon Syndrome. This is where I am getting to relive all the side effects of the drug combo, chills, brain fog, skin conditions, depression, fatigue and flu like symptoms. I can still feel the injection sites on bad days. I have days where I cannot get out of bed and days where I feel wonderful. It helps to understand that these are real symptoms and understand now how to manage them. My hair has not returned but happy to be bald.

I am happy to be alive and will keep on trucking Best of luck to everyone. Please let me know if you have any questions

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Susan Simon Member
Hi Robby. Your story mimics mine in so many ways. I had every side effect in the book. The one that bothered me the most was thinning hair. I guess that is because I am a girl. While I did not clear until I was in a clinical trial for Viekira Pak, and had no side effects, I still had the sides from years of hep C and many tries with interferon. My hair is thinner than before treatment. Treatment with interferon caused a lot of muscle and joint pain which I still have. Also my stamina never came back either. I try not to complain as I am so happy to be free of the worry about the virus progressing. I wish you the best and a long and happy life without hep C.
1. karo31533 Member
 I got married 7 months ago to a wonderful man who had interferon treatments years ago for Hep C. At the time he was great. Now the effects of the treatments come and go so erratically that I dont know who I will wake up to. Its like he is two different people. I dont know how to help or where to turn to find help.
davoe Member
I'm sick of commenting,on tx that I have done ,virus seems to be gone but so has my energy I'm constantly nauseas numb feet plus swelling an pain bloated abdomen all of a sudden lung problems asthma COPD joint pain , numerous infections immune system stuffed,I'm in my 60s but I felt fine before signing on with Gilliard hep cure Epclusa,why don't I ever see any negative reports,feels like a cover up to me,no one will accept any responsibility with my problems nor did I get any support during tx ,I know many people who's lives are now much worse also IV witnessed fatalities ,good luck to anyone who has done treatment,just wish a few negative experiences were available,the net is full of stories nerve damage is just one common side effect never mentioned ,thanks ..
1. Susan Simon Member
 Hi Davoe. I am sorry you are having such a hard time. You are not alone. We hear many times about people who are dealing with all kinds of issues post treatment. By any chance are you within driving distance of National Institutes of Health in Bethesda, Maryland? Please let me know.
Susan Simon Member
Robbyd, I am so sorry to hear you are dealing with post interferon syndrome. We do hear about people complaining about this sometimes. In my case, I had hair loss, muscle and joint pain, and severe fatigue when I treated with interferon. I actually didn't clear until the newer drugs thankfully became available. My hair stopped falling out, but never came fully back. I still have fatigue and muscle and joint pain but not to the extent as when using interferon. There is a 10 year study going on right now that is looking at people who still have medical issues even though they are cured. Hopefully we will eventually have some answers. I wish you well. Be safe and stay well.
1. svand Member
 <inline-mention username="Susan Simon" user-id="3516623"/> Thank you for that information. I treated with peg interferon and ribaviran for 48 wks 2006. Side effects started 10 days in, remained the duration. Reached SVR, at 12 wks, and 6 mos tx;c continue to be undetected. Wish I could say the same to the post tx effects. Fatigue, hair thinning, 15% weight gain, thyroid, elevated kidney function, and depression (very low dopamine levels) Everytime I have inquired about the post tx effects, there seems to be wall, and several doctors have said it was part of doing tx. 
2. Susan Simon Member
 <inline-mention username="svand" user-id="4556945"/> I am so sorry you are dealing with these after effects. So many doctors are unaware of these issues. I hope you can feel better eventually. (Sue, Community Moderator)
grizzley1 Member
Hi Robbyd, I thought I was reading about myself for a minute !! Half of my hair returned but still falls out, I have Lupus, had 2 open heart surgeries and all the rest of it after my treatment. Its been 9 years and I have felt terrible and sick ever since. I'm so happy that they have changed the treatment but unfortunately I hear there are still side effects. Tana
GoodNews Member
I was treated with interferon plus ribavirin about 10 years ago. I experience chronic fatigue, joint, and muscle pain. Some day’s I’m okay but after a busy day, I can barely move. REALLY can’t move. Feet feel broken, body is extremely weak - mocking some of the symptom I had during my 6 month treatment. I have tinnitus, and my vision has deteriorated. I spoke with a primary care physician who was dismissive (not a rare occurrence with me being a woman) and he suggested that I was depressed. That’s not it. So, I figured I was just aging at a much faster rate than my husband. It JUST dawned on me to look up a connection with my Hep C treatment and my symptoms. I’m. Just. So. Tired. Would love to know which kind of doctor to book an appointment with. Thanks for your help.
1. Spanner Member
 <inline-mention username="GoodNews" user-id="4210310"/> omg this is very similar to my experience. Nice to know it's not all in my mind as has been suggested. 
2. Leslie Anne Castro Member
 <inline-mention username="Spanner" user-id="6878117"/> I’m sorry to hear you’re going through the same symptoms as GoodNews. Feel free reach out any time through your Hep C journey. Although my story is a bit different, I believe educating oneself about the signs and symptoms of Hep C can help in the long run. Thank you for sharing. Leslie (Community Moderator)
Juliana Swaren Community Admin
Hi <inline-mention username="GoodNews" user-id="4210310"/> , Thank you for reaching-out. I'm so sorry about everything you've been through after hep C treatment. Please know that the <a href='https://hepatitisc.net' target='_blank'>HepatitisC.net</a> community is here to support you! A hepatologist or infectious disease specialist may be able to provide more information about and options for the long-term effects of treatment. Or, is there another primary care provider you could ask? You can also consider calling Help-4-Hep to ask questions and get support. http://www.help4hep.org/ Please let us know if you have any other questions. We hope this helps. Wishing you all the best! Warmly, Juliana, <a href='https://hepatitisc.net' target='_blank'>HepatitisC.net</a> Team
1. 813teresa Member
 <inline-mention username="Juliana Swaren" user-id="3503304"/> I was treated for hep c about 8 years ago, my hair under my arms never grew back the hair on my head is very thin. I have joint and muscle pain all the time. I'm now having trouble holding my urine and bowels and wondering is this is a side affect from the treatment. When I was on the interferon I lost all muscle and never really got back my strength. If I go a couple of hrs without eating I get a terrible pain in my stomach causing much weight gain. My skin is itchy all the time but I do know that is also caused by the cirrhosis. I have days of depression but not to bad because i have learned that this is my life now. I never have energy , I don't know if it's because of all the weight gain or the lack of muscle it takes to do anything. Please if anyone is having any of this please let me know what you do for any of these symptoms.
Spicequeenhelene Member
I am on my last month of taking Epclusa.My blood results today show that I am undetectable for HepC...100% success rate and no side effects as of this moment.I will finish taking the meds and follow up in 12 weeks after the last pill..I had the virus for 25 years so I’m very happy to be rid of it!!!!
1. JessicaLipkin Community Admin
 That's fantastic! Congratulations on almost being done with treatment. After 25 years, that must be such a relief. Remember to continue regular follow-ups with your doctor even after finishing treatment! -Jessica, Team Member
Danny62 Member
Sign me up also. Interferon has ruined my life.
1. Erin Rush Community Admin
 <inline-mention username="Danny62" user-id="3509348"/>, I am sorry. Interferon has definitely profoundly affected many, many lives. I am sorry that has been the case for you. Best, Erin, <a href='https://hepatitisc.net' target='_blank'>HepatitisC.net</a> Team Member.
Spanner Member
I went through the 48 weeks interferon ribavirin treatment in 2013 and suffered many side effects whilst on treatment. It brought on menopause to top it off. While on treatment and since I've developed painful joints which have been told is fibromyalgia? Also I still have muscle weakness,liver tenderness and fatigue. Was told all these symptoms would improve but they haven't. Actually feel worse than before starting treatment. Just wondering if anyone else has experienced similar and what have you done to improve the situation. Kind regards Spanner
1. Erin Rush Community Admin
 Hi, <inline-mention username="Spanner" user-id="6878117"/>. I am sorry you are experiencing these long term side effects and I do hope other community members see your question and share their experiences with side effects from HepC treatments. The combo of interferon and ribavirin can cause some long lasting side effects, including fatigue, anemia, infections, flu-like symptoms, and more. There's good reason why these treatments just aren't used as often anymore! Here are some tips for managing some of those symptoms -- <a href='https://hepatitisc.net/living/reduce-side-effects' target='_blank'>https://hepatitisc.net/living/reduce-side-effects</a>. Also, I would definitely talk to your doctor about your ongoing issues, if you haven't done so already. And, don't take, "Well, that's just the way it is." as an answer! Some side effects may not completely go away, but you deserve to have a doctor that listens to your concerns and actively works with you to fix or, at the least, minimize their impact on your daily life. Also, have you been officially diagnosed with fibromyalgia? I ask because some of the symptoms you mentioned could very well be tied in to your fibromyalgia. I hope this information is helpful and I sincerely hope you start getting relief from these issues very soon! Best, Erin, <a href='https://hepatitisc.net' target='_blank'>HepatitisC.net</a> Team Member. 
2. Leslie Anne Castro Member
 <inline-mention username="Spanner" user-id="6878117"/> Sorry to hear that you have had severe joint aches throughout your Hep C journey. During my Hep C journey, I took Epclusa for 90 days to cure me from Hep C. Hopefully you found a treatment to helps your body cure Hep C. Leslie (Community Moderator)
CommunityMemberfd17f9 Member
 I also have fatigue that occurs at times. Since I went through 20 years of treatment I'm now 76. I seem to have memory loss for many of the years I went though treatment. It feels like I only lived half my life and I just skipped over some. It sounds strange but I feel cheated in a way. It's not that I'm not grateful for receiving the cure but I almost wonder where I was that I allowed all those years to pass without having a solid memory of what happened during the span of years. I was a young viable man who feels he just missed the important years of interacting with others as a normal man. I started with interferon in 1999. I've been married since 1989 but going to events and socializing only happened in the recovery time between rounds of treatments. It's my fault I got Hep-c but I was so happy I was able to free myself from the reason I came in contact but to find out many years latter I was in store for the ride of my life when diagnosed. The feeling I might not live much longer can get to the most positive of minds. Thanks for reading. Rob 
1. Lori.Foster Community Admin
 <inline-mention username="CommunityMemberfd17f9" user-id="9745391"/> Hi Rob! I see you are new here. Welcome to the community! It must be unsettling that you are unable to remember so much of your past. Have you ever talked with your doctor about the memory loss and about the fatigue? The fatigue, especially, might have other causes that can easily be treated. For instance, many people produce less vitamin D as they age, which can lead to chronic fatigue. My husband had never considered a vitamin D deficiency because he is outdoors so much, but we learned he was severely deficient and that deficiency was a major factor in his constant exhaustion. Supplements have been a great help. I am glad you are free of the risk factors that led to you hep C infection and that you are cured. Sending the best of all wishes your way. - Lori (Team Member)