Hepatitis Community

I'm a college English instructor. I was infected with type 1a hep C in 1984 from a blood transfusion to save my life when a fibroid tumor started hemorrhaging. Non-a, non-b hepatitis was diagnosed early because my doctor caught the high enzymes and sent me to a gastroenterologist. Back then they diagnosed it by process of elimination. They also did liver biopsies in the hospital and had the the results the next day! Those were the days!

I treated first in '92 with three shots per week of interferon only for six months. Back then they just monitored liver enzymes. When mine stayed elevated, I was pronounced a non-responder. When the combo with ribavirin came out, I did that in '98, still with three shots per week but for a full year this time. Although I was reading that doctors were monitoring viral load throughout treatment, my doctor was still just watching my enzymes, which became elevated again during treatment. Eventually, three months post treatment he did do a viral load, showing that I was still detectable. I also had some pretty rough after-the-fact side effects from the treatment--hypothyroid symptoms accompanied by a weird bug-eyed appearance, extreme body aches, depression--so as far as I was concerned, I was through with treatment.

The doctor wanted me to try the new pegylated variety of interferon, but I figured it was too much like what I'd already tried, so I quit that doctor, too.

In 2005, I saw another gastroenterologist at my primary doctor's urging and did a year of treatment with daily Infergen shots and the usual ribavirin pills. That stuff worked, and the side effects were more bearable that what I suffered the other two times. This doctor monitored my viral load, which went undetectable at three months and has remained there ever since. He also referred me to a hematologist, who had me on Neupogen and Procrit when I needed them. And I saw an opthamologist to watch for retina damage. I did have one rough period after the second week when I became dehydrated and had to be hospitalized, but that was because I'd continued taking a diuretic for blood pressure which I didn't need during treatment.

I believe I had the best doctor in the world who did everything the right way to keep me on treatment for a year. It kills me whenever I read of people who have to quit treatment because of their blood counts, which would be helped with Neupogen and Procrit if insurance would only help. I also believe that Infergen is the best interferon and that daily shots are necessary.

Grammargirl

It's nice to meet you Grammargirl!

Would anyone else like to introduce themselves?

- Annie

I am LO from Texas and came to Web MD in 2003 of July. I was about in my 8th or 9th week of my first treatment and wanted to give up and not knowing anything about Hep C except that the side effects were horrible for me. A friend told me not to give up but get support from other Hep C'ers and find out how they deal with it and I asked for help in educating myself about hep c. I did not realize how much I needed to know and see the importance of getting rid of this disease.

I learned quickly right here in Web MD and found hundreds of people that were friendly and supportive. and going through the same things as I.. I still have some long time friends from here.

I have been determined to kill my dragon (hep c) since 2003 I have been through treatment 3 times so far and wish to go on a 4th battle soon. I went through the liver evaluations to get on a transplant list but lost my insurance when I had to quit working. Applying for Medicare is not until 2011.

People may not believe this but I live with all those side effects every single day. I developed cirrhosis of the liver, thyroid is off kilter, excessive fatigue, pain, confusion and memory loss as I have encephalopathy and depression, and recently diagnosed with diabetes type 2.......... the list goes on. I have written many poems in which it has been one way to express my feelings and give back the support others have given me.

I tell everyone I meet to Get Tested! Do not treat this lightly and do not loose Hope. If all else fails, pray and leave it in God's Hands. These are words from many friends now watching over us.

Hugz, LO

Hello:

I'm here because I have Hep C and I need some answers to some questions. I have 2 posts at the time, and I got a response to one of them within a day.

Thanks. Jimmy

Hi Everyone! As my screen name suggests, this is the second time around on the Hep-C protocol! I was infected, we believe, in 1970 when, at 19 years of age, I had back surgery and needed 5 pints of blood. Obviously, blood was not tested back then, and for many years, I donated blood. In 1992, I got an ominous-looking and sounding letter from the American Red Cross, advising me that I had Hepatitis C and to see my medical provider ASAP. My doctor monitored my liver enzymes and my only symptom for years has been extreme fatigue. In 2000, my doctor suggested trying the protocol, which I was only able to undertake for 8 weeks due to the numerous side effects. I since changed doctors and my new physician, in 2006, said it was no longer an option to undertake treatment, so I went back to the original gastroenterologist. 2007 was spent on Interferon and Ribavirin as well as numerous side effects. At the end of 2007, three weeks after I finished treatment, a blood test revealed the virus was still present. It has never been determined whether I am a "relapser" or a "non-responder." In any event, in October, 2008, I was started on a second round of Interferon and Ribavirin, this time lasting 72 weeks! I just got the word last Monday that my blood does not show any "detectable" virus (!) and thus, I am now in treatment for another year.

I do have some side effects: fatigue (duh!), muscle weakness, nausea, my hair grows about 1/2" per month, and I am now noticing some serious moodiness and brain fog. I have had the extreme skin itchies and it was relieved by OTC lotions as well as a prescription cream.

I HATE THIS DISEASE -- we don't look sick, and sometimes people who don't know us can't understand why we can't or are unable to do something.

hi annie my name is dewey.i had hep-c sence 1975 if you need help this is my e mail dwydavis@yahoo.com.

Hello I'm Rachel. I am 17 years old. I don't have Hep C. But I just found out less then a hour ago that my mom does. && My dad just went to get check to make sure that he doesn't have it too. I don't kno much bout Hep C. But I was surfing WebMd && saw this && wanted to join. I do believe that my mom got it a few years ago when she was into drugs real bad. Like by using someone else needle or something. Like i said before. I don't kno much bout Hep C. So if anyone had some advise or anything that would be great.

~Rachel

I've had extreme fatigue and pain for over 20 years. My liver enzines were always off and I did not get any better. Now, after just being diagnosed with Hep C and my biopsy showing liver damage, I wonder what I'm in for. I've just learned I need treatment. Twenty three years of being sick has sapped my energy and strength, but not my determination to get better. Even though I'm a newcomer here, I've already received help from my posts that have kept me afloat, and I'm grateful to everyone here.

Hi All

I'm Joel I've had hep for I don't know how long, probably the 70's I was dx'd in 01 and spent 02 on Tx, that's when I found this place and it helped alot to get thru the tx. I was clear on my pcr at mid tx I wish I would have tested earlier but the significance of clearing early was just being talked about then. At least with MY dr. But anyway, On my 1st pcr a month after completing 48 weeks of all that fun my 1a hepc was back in business So now I just watch what I put thru my liver, read labels, eat healthy, don't drink or smoke and drop in here from time to time to see if there is any buzz about any new tx's And maybe add some words of encouragement.

Take Care

Joel

hello, I attempted this yesterday so, I hope it works this time . I was diagnosed last fall. Geno type 1a stage 1 grade 1 . I've had the virus about 28 years or so we think . I have a supportive family , which is great. All tested negitive . It took me about 2 seconds to decide to treat although I waited until after the holidays to start due to my fear of serious side effects . I'm in my 7th week of treatment and so far the side effects have been mild .I know I have a few things against me in this however I like to feel I have a few things in my favor. Either way I feel I have to try . I read this board often and gain some encouragement . I just want to let people know that there are others out here rooting for you in your fight against this virus .

I'm from Lorain, oh. I had a transfusion in 1966 after child birth. I was dx in Oct 2008. I 'm on my 7th wk of tx. What a bummer. I've wanted to quit several times. I'm so tired of not being me. i have always been a multi tasker. Now I'm lucky if I can get 1 task in a day. Thank goodness I'm retired. I don't know how people do it & work. My whole life has changed & I don't like it. What keeps me going is that my sister said if I finish the tx, we'll go to England. That's something to look forward to. What to hear something pitiful? I went for a walk w/ my 86 yr old mom & had to hold on to her arm. Sad state of affairs.

Hello, I'm a 56 yr. old male with Hep C. We think I got it in 1970 from a blood transfusion. I was diagnosed this past Nov. after giving blood for the first time. I got registered letter from the blood center and wondered "What's this?" So after numerous blood test,ultra sound and liver biopsy it was confirmed that I had Chronic Hep C .Stage 2. My liver enzymes were normal and still are, I into my 8th week of treatment with peginterferon and ribavirin. I also have Type 2 Diabetes. The treatment has caused my blood sugar to rise (260) and my white blood cell count to fall. My doctor has made ajustments to my meds to help get my numbers back in normal ranges. I thought I felt tired before I found out I had Hep.C, man I was wrong!! I stay exhausted now. I had to quit work, I have no energy. I have almost no appitite.
I can't remember anything(but my memory wasn't much before).Some nights I sleep great,some nights I don't. My skin itchs me to death!!!
My wife is doing everything I used to do around the house, on top of her full time job. I don't like that at all, it's not fair to her.
I don't know if I can take 40 more weeks of treatments. My viral load was over 1,400,000 before I started meds. They will check again at 12 week mark.
All I can say to anyone else is "hang in there" I know everyone's situation is different, but it can get worse! Since I've been diagnosed I've had 2 friends pass away- one heart attack and one cancer. At least we've got a chance to fight this disease!!
If you want to talk,I'll be happy to listen.

Welcome BTD53 to the Hepatitis community! I see that you have a nice tattoo as your profile picture! I hope that wasn't hard to upload for you!

Good luck with your treatments!

- Annie

Hi,I'm Mary and I just began treatment yesterday. I've had hep c for quite some time and finally got the courage to begin treatment.I hope some of you may be able to help me sort thru these side effects and just be a support system fo me and I for you.
Be blessed