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Hepatitis C (Hep C, HCV)

Question:

What was or has been the treatment for your hepatitis C, and was it successful? Submit Your Comment

Comment from: Primalfear56, 55-64 Female (Patient) Published: February 05

I am 64 years young. I was diagnosed with hepatitis C in the 90s. I more than likely was exposed in the 1980s. I thought I would die from this disease. I am now on my fourth week on Mavyret. The only side effects I've encountered are fatigue and nausea. I lost 7 pounds. Today it's been great. The question I have is if it causes pain in your liver.

Comment from: 1950 lw, 65-74 (Patient) Published: January 13

I took Harvoni for hepatitis C for 12 weeks, 4 weeks in, and no detection of virus. After 12 weeks I had blood work, and virus had come back 15. Viral count on January 2nd was back up to 1 million! Now I don't know what to do.

Comment from: Auntiesher, 65-74 Female (Patient) Published: January 08

I did my treatment for hepatitis C 17 years ago and it almost killed me. I did 5 months of ribavirin and interferon. The treatment was for 6 months, but I had to stop and get a blood transfusion, I had lost my hair and weighed 90 lb. I thought I would die, I am still suffering medically. Today at 70 my body is a mess and has been all these years.

Comment from: AjI, 45-54 Male (Patient) Published: October 08

My experience with Harvoni was that my viral load was undetectable after only 3 weeks of the protocol. I had minor headache and mild nausea just a few days over 2 months. It’s been 6 years since I've been cured with no side effects. I was diagnosed with the most aggressive hepatitis C strain and had it for over 30 years before the cure.

Comment from: Jules, 55-64 Female (Patient) Published: July 30

I took Harvoni as a treatment to cure my hepatitis C. It worked and my hepatitis C is gone. However, after my treatment I was diagnosed with early onset non-Hodgkin’s lymphoma.

Comment from: KEITH, 55-64 Male (Patient) Published: April 29

I was diagnosed with hepatitis C 5 years ago and refused treatment, because my liver tested good.

Comment from: AnnD, 65-74 Female (Patient) Published: February 03

I was diagnosed last June with hepatitis C. I thought they were mistaken as I had so symptoms. I had known that I had it in the past, but thought it was gone. Being sent to a liver specialist who then put me on Harvoni for 8 weeks was what worked for me. I was taking no prescription medication for anything for a long time, I then suffered severe side effects. Knowing I'd be healed from it, I began journaling my writings so that I could more fully share my story with those who might benefit from it. I had my 12 week post Harvoni blood test a few weeks ago and it shows, as expected, to be totally gone. When I started the medication, my VL (viral load) was over a million and now it is zero. So glad to have found a medication that really works and is nearly 100 percent effective for many people.

Comment from: Living with Hep C, 35-44 Female (Patient) Published: February 24

I was diagnosed with hepatitis C about 9 years ago. At first, I was emotionally devastated. My symptoms were bad, and I just felt like I was going to die. My dentist didn't want to see me anymore when I told her that I had the virus, and my family reacted very badly. It was quite an effort, but I didn't give up. The first months or years are the hardest. I quit drinking and using recreational drugs altogether and made some important changes to my diet. My viral count and liver enzymes went from very high to undetectable and normal, respectively. I've had few problems throughout these last years, and my liver enzymes have remained normal, for the most part. If you have been diagnosed with hepatitis C, you need to stop drinking almost completely, and stop eating processed and fatty foods. If you're overweight, lose weight. A fatty liver is the second worse thing you can have after alcohol. If at all possible, quit smoking. If you take any medication or are about to take any, be sure to let the doctor know about your hepatitis. Get into the habit of asking your doctor or pharmacist if this medication is potentially damaging to the liver. If you take vitamins, be sure you are taking safe levels, high amounts of vitamins A, D and iron are harmful to the liver. Try taking milk thistle and dandelion as an herbal supplement. These are helpful and are widely used in Europe for hepatitis. It is absolutely not a death sentence, and if you take these steps, you can, in all likelihood, have a perfectly normal life. Many people with hepatitis C never develop cirrhosis and some even clear the virus spontaneously within the first year of infection. Even if it has been more than a year since you were infected, take heart. If you treat yourself well and make some positive changes in your life, everything is going to turn out much better than you think.

Comment from: gygo, 55-64 Male (Patient) Published: December 07

I was diagnosed with hep C in 1991. I was treated in a study. I had a biopsy after about 9 months of taking 2 shots weekly of Interferon. It was a total success. My AST and ALT have been very low since completion of treatments in 1992. I have had a RHA test for 4 years ending in 2008. All 100% normal. I now drink alcohol moderately and get blood work every 6 months, it has always been normal. The doctors say you can't get rid of HEP C virus, but they can't detect any level in my body. They said if I wanted to give blood they could not detect anything. I would not since here is no medical proof that the virus can be completely cured. They say it might be possible, but not proven as of now. I highly recommend Interferon alone as I did not get sick. I felt weak and flu like for 1 or 2 days, then no affect for all nine months of taking shots 2 times a week. Final biopsy was 100% normal.

QUESTION

Hepatitis C virus causes an infection of the ______________. See Answer
Comment from: Keepingfingerscrossd, 45-54 Female (Patient) Published: December 02

I was diagnosed with Hep C in 2005 and did almost a year treatment of interferon injections (weekly) and riboviron pills orally every day. My viral loan count is done yearly along with a liver scan. Luckily I responded to the treatment well and just last month (Nov 2010) found my viral load is still at zero. I asked my doctor if this means that I am "cured" he replied that he doesn’t like to use that term but considers me in remission and that I am a long term responder. My viral load to begin with was in the hundred thousand rather than in the millions as in some people, so the doctor thinks that may have helped with the fact that I responded so well.

Comment from: nmgary, 35-44 Female (Patient) Published: December 01

I was diagnosed 5 years ago. I was in the hospital for a severe MRSA infection in my leg. When the doctor was placing the CVP line in my neck, she poked herself with the needle. Days later, I found out I was positive for Hep C. At the time, I was an IV drug user. I know that is how I got it. At the time, no doctor would treat me until I got clean. I have had many doctors over the past 5 years. Some doctors wouldn't even cross the room to examine me. I have a wonderful doctor now. I have been free of drugs for three years now. My biggest problem is that I am afraid to tell my doctor of my side effects. I am afraid he will stop the treatment. I want so desperately for this to work that I am willing to put up with the hair loss, nausea, joint pain, flu-like symptoms. After 10 weeks of treatment, my viral load was undetectable. I just hope the treatment continues to work.

Comment from: Chimp, 55-64 Male (Patient) Published: October 27

I tried treatment 4 years ago using peg-interferon and Ribavirian and after 12 weeks was stopped as there was minimum viral drop but nothing significant. The treatment was worse than the disease as I am symptom free and by Gods Grace have good liver function and the enzyme levels are just above normal but are positive for HCV. I participated in the Ideal study in 2006 and got the final study numbers stating that only 42% of participants had significant viral suppression to be deemed cured or arrested. Pretty poor stats if you ask me. It is better than nothing if it worked for you. I had my yearly hepatologist visit two weeks ago and they stated the third biotech drug a protease inhibitor should be approved by next summer 2011 and the dreaded treatment will be ribvirian, interferion and the protease inhibitor. They stated the arrestment or sustained viral suppression (cure, but not cured) is up to 75% for those of us that did not have a substantial viral copy drop on the two drug regimen. So there is real hope if you can gut it out for 6 months of treatment once your viral count drops to null.

Comment from: greyhound515, 45-54 Female (Patient) Published: September 10

I was diagnosed year ago after insisting I was not "depressed." I just could not get my 33-year old butt out of bed in the mornings even after 12-15 hours of sleep. I was in fantastic shape back then! I did the interferon, did not know to drink more water than I could ever stand and I learned about treatment side effects from a friend who was a research chemist I did great for maybe 7 years, then the virus came back. I did the combo treatment and now I am blessed with chronic diarrhea (IBS), depression/bi-polar, migraines, and now have Diabetes and high blood pressure. The government still doesn't believe me to be disabled. The good news is I have been okay since then other than occasionally pooping my pants. My hep C has been unavoidable for 7 years now though so I am remaining optimistic.

Comment from: chimom, 45-54 Female (Patient) Published: September 10

I was diagnosed with hepatitis C, stage II, genotype 1 in 5/06 at age 52 after feeling lousy for a couple of months. Never in my wildest dreams did the idea of having Hepatitis C come up in my mind. The doctors estimated that I had the virus for 20 years. I began the peginterferon-ribavin therapy, which lasted 48 weeks. It was a grueling treatment. I never had felt so exhausted 24/7. Some days I had to tell myself to put one foot in front of the other so I could walk. I chose to take my shots Thursday nights, took every Friday off work, and slept for two days. I would come home from work and fall sleep sitting up on the sofa. My family, doctor, and co-workers were wonderful and I would not have been able to complete the treatment if it was not for them. There were times when I almost quit. The first six weeks of treatment were hell, and I asked my doctor if I could have a note to take a couple of weeks off work to take care of me. His comment was "if you can't handle this, then maybe we should discontinue treatment." I convinced him to give me the note, and found another doctor in his practice. The new doctor called me when I had questions, was supportive, and was the complete opposite of the first doctor. Finding the right doctor is essential in getting through this treatment. I have achieved sustained virological response within three months from when I started treatment. Almost three years later, I am still virus free. I consider myself cured.

Comment from: elizabeth, 45-54 Female (Patient) Published: June 12

I just found out yesterday that I'm HCV positive and am going to have treatment for it. I’m not sure how I got it or for how long I've had, it but took care of my brother 4 years ago who passed away from not doing any treatment. I’m going to get treated and hopefully, I will see my grandchildren one day!

Comment from: auntiesher, 55-64 Female (Patient) Published: August 06

I spent an entire year sick in bed. Finally, a doctor asked me had I ever been tested for hepatitis B or C. I said no. The doctor did a test and it came back positive for both hepatitis B and C with my viral load way over a million. I never did jaundice. I just got sick vomiting and itching. I started interferon ribovirin for six months.

SLIDESHOW

Hepatitis: How Do You Get Hepatitis A, B, and C? See Slideshow
Comment from: Lee, 55-64 Male (Patient) Published: July 31

I was diagnosed in 1981 for Hep.C. There was no real treatment for it back then. I had a liver biopsy done and no damage was found. In 2002, I started Peg-Intron treatment for 11 months. It was rough.A t the end of the treatment, tests showed zero viral load. Each year since then I have been tested and each year I have tested zero viral load. I was an occasional drinker. However, since 2004 I really don't drink at all. I have known several people who quit the treatment and are no longer with us.

Comment from: thndrfox, 65-74 Male (Patient) Published: April 17

I took peg interferon treatments for one year. My symptoms returned after about 6 months of treatments. My viral load levels are now over ten million.

Comment from: outliver, 55-64 Male (Patient) Published: October 12

I can only suspect that I became infected with HCV when I injected drugs over 30 years ago. I was diagnosed HCV-genome 4 about four years ago after a lot of blood work done in a follow up to a routine check-up. I had just turned 60. I am still asymptomatic and have recently been treated for bladder cancer and currently being monitored for recurrence. I have tested negative for cancer since my tumor was removed about two years ago. I will soon return to my liver clinic for a meeting with my doctor to discuss my current status and to discuss treatment.

Comment from: Sue, 55-64 Female (Patient) Published: August 29

I was diagnosed with Hep C in 1994. The treatment at that time was 6 months with Interferon A. After treatment I was still extremely ill and found a doctor who sent my blood away to get a count of the virus. Then he kept giving me Interferon until the count was zero for six months. All together I was on Interferon for more that 18 months. For the next 5 years he sent my blood off and they found no virus. I have had no recurrence and my liver functions have been normal ever since.

Comment from: badluck, 55-64 Female (Patient) Published: April 27

I got a tattoo 5 years ago and within weeks had a terrible rash all over. I was tested and found positive for hepatitis C. I immediately went on the treatment program and had a terrible time, developed every negative symptom. It turns out I am allergic to Interferon. I now have cirrhosis, with high ammonia levels in my blood. I am so bloated I look 9 months pregnant. I can't find a doctor specializes in liver disease and every time I get my news it's bad. I found out a transplant isn't possible because Hep C is a blood disease.

Comment from: slone, 35-44 Female (Patient) Published: January 03

I received Interferon injections 3x week for 6 months. This knocked my viral count down from millions to thousands; but did not go into remission. 1 year later did a cocktail of interferon with Ribavirin added. This knocked my viral count down even more but still not in remission. Side effects included deterioration of eyesight, and my red blood cells burst to the point of having to stop treatment after 6 months. I also suffered from nausea (herbal smoke helped with this). I had general flu like symptoms four hours after injection. Ibuprofen helped with aches and pains. My hair began thinning to some small degree. Even with all of this, I’m looking forward to trying new remedies.

Comment from: hanging in, 35-44 Female (Patient) Published: September 27

I went for life insurance and got turned down because my liver enzymes were elevated. I went to a liver specialist and since I already had thyroid cancer they told me I needed to go to a liver transplant specialist in Philadelphia three days before Christmas in 2008. It was the hardest Christmas my family had to go through. But we made it. I am on treatments seven days a week for 96 weeks but cannot handle the pills they make me so sick that I keep losing weight. My virus is negative (so it is working) but I still have another 44 more weeks left until 2011. Just stay strong because you will have good days and bad days. I really feel like you only get what you what you can handle, but sometimes it feels more than I can handle.

Comment from: susan, 45-54 Female (Patient) Published: September 09

I was diagnosed with hepatitis C 10 years ago 1999. My medications were successful and cleared the virus from my system. I have had yearly testing and have been clear up until now. I had virology taken to donate my stem cells to my sister who I am a match for. Unfortunately the virology came back positive for hepatitis C. I am devastated and can't believe it could return after all these years (10), and now I cannot be a donor because of this. I have an appointment next week with my family doctor to see what the next step is. I hope I am a candidate for the new interferon. I am not sure if you can have the treatment again.

Comment from: sicko, 55-64 Female (Patient) Published: August 16

I've had HCV for probably 35 years. I was fine until around age 41 (I'm 60 now) and began having severe migraines, fatigue, and a sinus infection that wouldn't leave. I finally asked my doc to test for 'everything possible' and she found the virus.

Comment from: Guggles, 45-54 Female Published: June 01

I am a health care worker (an RN with three degrees) and received a needle stick injury twice...Once whilst working in the male prison and another from an infected male patient (in early 1980s). Also found out at same time (was a silly naive 24 year old in love) that my partner (male) was having anal sex and IV sharing with a number of transsexual men (a label they gave themselves). I was very listless and found it hard to care for my son .It was and also unbeknown to me my partner was HIV positive and has since passed on. I am HIV negative. I found out in 1985 I had contracted Hep B. In 1990 was tested for and came up positive for Hep C. Had Liver Biopsy and told "you must be one of the lucky 10%. You have rid yourself of the virus.”

Comment from: John Valdosta Ga, 55-64 Male (Patient) Published: April 19

I got tested in November of 2009 and am positive. My doctor failed to inform me until I went in for a physical in March, 6 days before rotator cuff surgery (I’m typing w/one hand now.) I am currently fatigued; I have no appetite, I have chills and diarrhea. I lost 17 lbs in the last 2 months. I have quit drinking. ALL VIET NAM VETS SHOULD BE TESTED!

Comment from: oscar, 35-44 Female (Patient) Published: April 06

I was diagnosed 7 years ago as a result of belly pain. My family physician wasn't sure what was going on with me, I suggested a hepatitis c test. My ex-husband had tested positive years prior. Sure enough that's what it was. I immediately went to a specialist. After a while, I had to take a leave from work about 5 months. The treatment was difficult. My hair thinned, I was weak and alone most of the time, but I kept telling myself that a year goes by fast, I could do this. Of course, in the back of my mind I thought when it was all said and done, my viral load would be undetectable. Not so, my viral load was good, but when I stopped taking the meds, my viral load went up. It’s not as critical as it was in the beginning though. I was so devastated when I got those results. But I had it checked every few month for awhile, then I just wanted to pretend it all didn't happen. As a result, my conditioned has worsened. My next step, if I can't get it under control is a liver transplant.

Comment from: duck01, 35-44 Male (Patient) Published: February 04

I have had no treatment yet for my hepatitis C virus but have been getting my blood taken for the viral load and the last one was ok. I have had hepatitis C since 1999 with no Jaundice yet, but I have the other symptoms.

Comment from: happyface, 55-64 Female (Caregiver) Published: January 27

I am a nurse and found out in 2001 I had HCV. I tried to donate blood that is how I found out. Now I am 56 yrs of age. I recently got insurance. I didn’t tell anyone that I had HCV on insurance fearing of denial or rates I couldn’t afford. As I’ve gotten better educated, I know I need the medication. I figure I’ve had the virus 20 years or so. There are days I don’t think I can go on but I still have a child 15 yr old to love and live for. There are days I just want to give up and not be here. I am female, single. I don’t see way out of this horrible mess.

Comment from: what do you know, 55-64 Female (Caregiver) Published: January 12

I’m 59 years old. I found out at 50 that I have hepatitis C. I get my enzymes checked every year and except for a little fatigue every now and again, so far so good.

Comment from: carpedem, 35-44 Female (Patient) Published: November 03

I found out I had HCV when I had regular pre-surgery testing for a bladder tuck. My liver enzymes were slightly elevated. I don't know how long I had it due to the fact I was a lab technician for over 20 years and had few exposures. Regular treatment does not work and my symptoms are acute and debilitating.

Comment from: 55-64 Male (Patient) Published: October 12

I am a veteran and I am being treated for hep C in Oregon. I have had a biopsy, and up until now, I’ve been offered interferons. From what I understand, it’s effective but produces flu-like symptoms for something like 6 months. Also, I have heard of a newer drug that might not be so disabling, and I would really like to know more. I’m not far from the fourth stage of hep C and all of my enzymes are in good shape.

Comment from: ATLpeachy, 25-34 Male (Patient) Published: October 07

I was given what I thought was my death sentence when I was 17 years old. I went to the doctor my PCP referred me to and she stated it was acute. They told me I would probably not feel the disease until much later in life around 50s if I ate no preservatives, drank no booze, no caffeine, and ate all organic and natural foods. They begged me not to go on the then brand new treatment as it would make me feel more sick than needed. I held strong and demanded to do this while I was young and more able. I did the shots and took the meds for a while. The day of and after my injection I felt like I had the FLU and just all together horrible. I started to lose my hair. Phenergan was a must and the work I did at the time (server/catering/bar tending) was too hard and employers didn't care nor understand. I decided to go off the treatment as I had to work and loved my beautiful blond hair :) that was 7 years ago and my liver count is perfect. I have no symptoms and now eat and drink as I please. This treatment does work. It will make you sick, but you will be healthy in the long run. Don't let Hep beat you......we all can Kung Fu Fight It!

Comment from: Gary, 55-64 Male (Patient) Published: July 06

My hepatitis C treatment was for 48 weeks. That was 3 years ago. It was effective. However, I've since had leukopenia.

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