Patient Comments: Hepatitis C - Symptoms

Question:

What symptoms did you experience with hepatitis C? Submit Your Comment

Comment from: Kris24eye , 55-64 Male (Patient) Published: June 14

My symptoms of hepatitis C were fatigue, weakness and above all nausea. Over the last 5 years every 2 to 3 weeks I'd get nausea attacks. I'd end up in the emergency room and get rehydration and anti-nausea medicines (Valium or Xanax). Medicaid denied my doctor's request for Harvoni 4 times because, 'I wasn't sick enough, lacked liver damage.' I found a patient advocate in Australia where generic Harvoni was available for a mere fraction of US cost of USD 100,000. Less than USD 1000 for 12 weeks of treatment. I've been taking the pills for 3 weeks as of today. After week 4 I'll be retested and I'm hopeful.

Comment from: Wegotthis, 25-34 Female (Patient) Published: May 29

I have tons of hepatitis C symptoms and pain. Good days are a blessing and bad days come in rows. I wear Band-Aids all over my body because of hives. I don't know if my skin is reacting to something I am consuming. I have gastrointestinal issues every day. For food I find that brown rice is sometimes all I can handle.

Comment from: Vinay, 45-54 Female (Patient) Published: April 06

I purchased buttermilk from a nearby shop at 17: 00 and my family which includes my wife and son ate it with salad. I (and my son) had nausea next morning with vomiting at 10:30 hours. We thought it will be cured with time but we had vomiting in the evening and night. It took almost 4 days to cure the food positioning with medications like IV treatment.

Comment from: 35-44 Female (Patient) Published: January 05

It was December 20th and I came home from Christmas shopping. I told my husband I had an earache and was going to bed. By the next morning he found me unresponsive and sideways on the bed. By the time the paramedics arrived they found me with 103 temperature and could not wake me and my blood pressure was dangerously high. I woke up on December 23rd with a PICC line and in the ICU with a diagnosis of strep/pneumococcal meningitis. I spent 8 days in the hospital and came home on the 28th with PICC line and outpatient antibiotics. The fast response of my husband kept me alive.

Comment from: Peter T., 65-74 Male Published: September 28

I have been totally paralyzed for 23 years because of my tailbone injury. I can only lie on my back, but since my coccyx hurts so much at night, my husband is turning me for three hours on each side. He also uses electric stimulation on surrounding muscles, and we have every pillow imaginable. We don't even know what kind of specialist to see.

Comment from: Mewsician, 35-44 Female (Caregiver) Published: November 16

I have had symptoms of SIBO (small intestinal bacterial overgrowth) for at least 25 years; diagnosis about 20 years ago. Within the last year, my food restrictions made it nearly impossible to eat much away from my own kitchen. Then I was treated for a root canal related infection, with a 'mycin' antibiotic. All of my SIBO symptoms disappeared almost immediately. This was about six weeks ago; I have been testing various foods, and have added many of them back into my diet. However, time will tell whether symptoms will return.

Comment from: Agutierrez, 55-64 Female (Patient) Published: April 12

I suffer from vertigo and after two years, I got a stroke. I was told by my doctor to not ignore headache with vertigo. I been on Serc for a long time. This diminishes the vertigo but I get it almost every year. The bad news is that it is getting stronger every year. Every attack is very debilitating and I have to rest all day. They last a week, two or days. I am careful not to get a stroke.

Comment from: Don P, 55-64 Male (Patient) Published: March 20

I contracted hepatitis C in the late seventies from IV drug use. I was diagnosed in 1995. I have experienced a lot of symptoms including fatigue, headaches, recurring infections (mostly sinus) and worse allergy symptoms. When I first got sick my immune system really went off the rails. I had gum problems, infections under my arms and polyps in my ears. When I got clean in 1987 I was limited to 4 to 6 hours a day. I could not work. I elected not to do the treatment because of several reasons, chief of which was I am into alternative medicine. After many years of research and therapy I work full time and feel good most of the time. My liver enzymes are close to normal and I am still in stage 1 liver disease. This is a potentially fatal illness and I think we should ponder treatment decisions carefully. There are other options out there that your doctors aren"t going to tell you about because they are uneducated in supplements, herbs and other alternative forms of treatment. Check for yourself, it"s your body! Thank goodness I am still alive and clean. Good luck to everyone who suffers from this illness.

Comment from: karmatrue, 55-64 Male (Patient) Published: January 23

I tested reactive for hepatitis C in 2006. I experienced no symptoms since then. When retested in December of 2013, I was told by the doctor that I was positive for the antibodies, but negative for the virus. No one has definitively explained this to me. I wonder if it is because of the quantitative parameters of the test. All my liver enzymes, etc. are in the normal ranges.

Comment from: pauline, 45-54 Female (Patient) Published: October 31

I was diagnosed in 2000 while pregnant with my 2nd child. I was probably infected back in the late 70s from IVDU (intravenous drug user). I was told by my family doctor to wait for treatment since I was relatively healthy so I did treatment in 2011 with a study drug along with interferon and ribavirin. It was big mistake. After 6 months of pure hell the virus came back along with chronic pain and fatigue. Genotype 1a is not easy to destroy. My symptoms are fatigue, muscle and joint pain, insomnia, headache, brain fog and diminished cognitive skills. Any kind of stress shuts me down with pain and inability to cope.

Comment from: Sleepy, 55-64 Male (Patient) Published: October 08

I was diagnosed with Hepatitis C (HCV) over a decade ago. I have terrible sores on my lower legs and developed an itch that consumed my whole body, little bumps from my head to my toes. I was scared and felt like nobody wanted to be near me, (that was just my paranoid thinking) and became very depressed. I have had two years of interferon (non-peg and pegulated) and have been doing well since. I became a diabetic, which happens to some with HCV and now have to deal with that plus I believe that the new COPD I have is caused by my weakened health, but I did smoke.

Comment from: linda, 45-54 Female (Patient) Published: January 05

I have been getting lower back pain a lot pain, it goes into my buttocks, into my thigh, and then my knee, sometimes into my calves. It hurts when I sit for long time and hurts when I walk. The pain is really extreme, I think it may be sciatica.

Comment from: wrongchoices, 45-54 Male (Patient) Published: July 14

I found out I had hepatitis C after giving blood to the Red Cross in 1995. I got it sometime between 1980 and 1991 from either drug use, tattoos from unclean sources in other countries or unprotected sex). Around 2008 I started to be tired all of the time no matter how little or how much I slept. I have type 1, so I haven't done any treatment to date. I wish my insurance would pay for the new expensive treatment.

Comment from: Mswhite56, 55-64 Female (Patient) Published: March 02

I had the treatment prescribed 4 years ago for hepatitis C after having it for 39 years. In one week the virus was cleared and I could tell because the awful pain and heaviness in my legs and my feet neuropathy was gone! I did treatment for 6 months genotype 1. I haven't had the test to confirm, but I know it is back. Those old symptoms have returned and now, after 43 years I recognize them. Plus the tiredness. I'm so disheartened. I was almost at the 5 year 'cure' mark.

Comment from: bigsmitty, 45-54 Male (Patient) Published: March 19

I was diagnosed with non-A non-B hepatitis in 1980 they didn"t call it hepatitis C back then. I took the interferon treatments in 2003. I"ve been living with hepatitis C for 34 years. The treatments didn"t work. I have no symptoms that bother me at all, I have a very high count in my blood stream. I lift weights and run 5k races and stay pretty active all day.

Comment from: 55-64 Female (Patient) Published: October 08

I contracted Hepatitis C from a health care worker 1-1/2 years ago. I am tired all the time. I have stomach pains. Feel shortness of breath often. I have a metallic taste in my mouth all the time. I am afraid family might get it, although I've been told that it has to be blood-to-blood contact. I still feel like I am harboring a dangerous monster.

Comment from: Mr. Texas, 25-34 Male (Patient) Published: May 14

I was diagnosed with Hep-C a little more than a year ago. I was going to the ER about twice a month and had severe abdominal pain so the doc said that my liver enzymes were elevated. So that lead to a blood test which lead to hep test and bam I had Hep-C. I don't know how I contracted it and that is a private matter but now I have to figure out how to live with it. I have an option for the meds which is called infer ion something like that but I didn't do that as of yet. I take all sorts of medicine like methadone, Ritalin, lortab and prilosic. Now I have to take this for that and that for this so I am skeptical on what to take because I have good days and bad ones. I know I have to eliminate some meds for the treatment but I am so confused but I want to live another 20-30-40 years if the Lord allows me.

Comment from: cougie, 35-44 Female (Patient) Published: March 30

I was diagnosed about 2 months ago although I have suspected that I was positive for hcv for about a year. I work in the health care industry and believe I caught the virus via a needle stick. My symptoms started with exhaustion, aches and pains but then I started having fevers followed by vomiting spells then liver pain. I'm not sure what treatment I will be doing or when since I have no insurance. My viral load is low even though function tests were high. My prayers are with all of u and the wonderful people who are trying to find a cure.

Comment from: 25-34 Male (Patient) Published: April 06

The only thing that seems consistent is that I'm always exhausted. There is no such thing as enough sleep for me. I require cup after cup of coffee in the daytime and several hours of sleep at night, and I still feel tired. Other than that, all my symptoms seem so random. I have occasional aches and pains. My stomach hurts a lot, and I just plain don't feel good a lot of them time. I don't know how long I have had hepatitis C.

Comment from: JackieS, 55-64 Female (Patient) Published: September 25

I went to give blood one day and the results came back and he told me that I had hepatitis C and to go to the doctor. I did so they went to draw blood and it came back that I did. So I have to deal it with it for the rest of my life.

Comment from: Deeree, 65-74 Female (Patient) Published: May 22

I am 65 (female) and got hepatitis in my early 30s from several episodes of IV drug abuse. I got sick for a while then the symptoms went away... mostly. I stopped all drug use over 20 years ago, unfortunately I only stopped drinking 10 years ago. In the last year I have lost my appetite and lost around 40 lb. I feel pretty good (never had treatment) except I am starting to have memory issues. It could be Alzheimer's or from the hepatitis as I have read that others have had similar problems. I think the memory loss is the worst symptom as it is very embarrassing and frightening for me. I hope it is the hepatitis C and not Alzheimer's. I see all kinds of remedies being sold for memory loss but I am wondering if anyone knows of any real help for the memory issues.

Comment from: JDee, 55-64 Male (Patient) Published: February 25

To all the people that have been diagnosed with the Hepatitis C virus out there, keep the faith. I know what you're going through mentally and physically. I've lived with the virus for many years and I mean many. I've been very fortunate all these years with no problems other than my stamina isn't what it used to be, but that could be because I'm older now. Don't give up. I wish I could help you all deal with this disease.

Comment from: gorgse, 25-34 Male (Patient) Published: February 06

I recently have been diagnosed with hepatitis C. I had protected sex with a lady and had a condom breakage. Sounds like my chances were very slim to get hepatitis C that way, but I guess that is my luck. I started getting weird night sweats about 3 weeks after exposure and I started thinking it was HIV. I had an STD panel screen that included an HIV antibody test(I requested antigen, but no one listened to me). The test came back positive for the hepatitis C antibody. I am scheduled to see a gastroenterologist in a few weeks. Lately the night sweats seem to be disappearing, but my lymph nodes in my armpit and groin have been inflamed. I didn't see this listed as a symptom of hepatitis C and that makes me still worry that the wrong HIV test was done since I was in the window period. I do not seem to be running a fever though, so that is good.

Comment from: dmiller, 55-64 Female (Patient) Published: October 31

I was diagnosed with hepatitis C 12 years ago. I was told it was dormant, but now 12 years later I was told I have it again. I am so sick sometimes I feel like giving up. I am so tired and no one understands why I just want to sleep. People are afraid of me and my 'disease.' I also have horrible sores in my mouth, does anybody else have this? I am tired and in pain constantly. I am a 56 year old female and have no idea how I caught this.

Comment from: BC, 55-64 Male (Patient) Published: July 12

Almost two years ago my upper hands began to blister (like if were burns, filled w/clear liquid) and were itchy. Prompting by an old girlfriend I had a physical exam with blood work that I hadn't had done for 50 years. I was diagnosed healthy but with hepatitis C. Never had a transfusion or used needles, can't figure out where it might have came from. I have had to give up my beer drinking. Now at 61 years old, I am on Peginterferon alfa-2a (weekly), with Ribavirin (100mg daily) for 5 weeks with only insomnia and occasional minor headache and cotton mouth as side effects. I am to start the Incivek (2,250mg daily) today. I feel fine, drinking excessive water that hinders my appetite. I am hoping to be cured. My hepatitis C in blood is low >700K units, when the doctor sees it in the millions in others.

Comment from: longterm, 45-54 Female (Patient) Published: October 20

I was diagnosed and treated in 2002. Unfortunately the treatment failed and there is nothing else the doctors can do. They basically just told me to go home and take care of myself. So I make sure that I live a very clean life and try to do the best I can.

Comment from: chibbie, 75 or over Female (Patient) Published: July 15

I was diagnosed with hepatitis C in 1989. The only symptom I had was extreme fatigue. As I was a regular blood donor, the Red Cross sent me a letter to say thanks for your contributions, but don't give blood anymore and see your doctor because of elevated AST and AGt. A liver biopsy found I have genotype 1. I am a non-responder but still living.

Comment from: Chris H, 45-54 Female (Patient) Published: June 01

I have pain in my liver area, something that my gastroenterologist says he's never heard of. I was diagnosed about 10 years ago, and I haven't really had any trouble sleeping or low energy. When I was on the Interferon/Ribovarin treatment however, I was extremely tired, irritable and generally felt like I had the flu 24/7. It was horrible. If it had worked for me, I would probably sing praises, but since it didn't, it is remembered miserably..

Comment from: noodles, Female (Patient) Published: June 01

I was diagnosed about 10 years ago. I feel fine 99% of the time. Not a drinker or drug user. Rarely, a glass of wine with dinner, if it is an occasion, like a birthday party or a celebration of some sort. Recently had my esophagus looked at and there were no varicose veins. I was given lasix and lost a lot of weight. I was given no other drugs. I was diagnosed when I had brain surgery. I got the problem when I was given blood in childbirth in the70's. My symptoms are that I am sometime tired, but I give that to the fact that I cannot sleep and as I am alone, my cooking is almost nonexistent. It is extremely difficult to cook just for oneself and I have very little appetite. I also have trouble sleeping; in fact I cannot sleep without a mild sleeping pill. Just to help me over the edge into sleep.(that is a new thing for me.) Thanks for listening.

Comment from: puppylove2, 25-34 Female (Patient) Published: May 17

I just found out I had hepatitis C five days ago. I got tested because I was sick for a week, my doctor says my numbers are high but I have pain all over. My legs and back are the worst. I'm praying treatment will work for me. I have two kids that need me so we'll see what happens.

Comment from: sj, 25-34 Female (Patient) Published: February 23

I'm tired. I hurt in my muscles. I can't sleep. I have belly sickness alot. I have a burning in the liver area. I've been sick with hepatitis C for 5 years.

Comment from: 45-54 Female (Patient) Published: February 04

Very tired always never getting enough sleep. It feels like your always tired and run down.

Comment from: gomper, 55-64 Male (Patient) Published: October 17

I am currently on my last two weeks of peginterferon, ribavirin, and telaprevir. My hepatitis was so bad I was in the hospital with acuities, varicis, which I had banded twice, internal bleeding which brought me close to death and cirrhosis. I had quit drinking 3 years prior to all this, not a drop. The medications cost $21,000 a month, the telaprevir was the most expensive. Plus other forms of chemotherapy I had to take to boost my platelet count and my hemoglobin caused by the hepatitis chemotherapy medications. In the beginning it was hard, but after 1 to 2 months I became more and more used to it. 24 hours after injections I was useless for 2 days, but I got through it. Viral load gone and enzyme levels normal.

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