Hep C Treatment

March 19, 2008   |   19 Comments

Did I ever mention that I’ve basically been kind of sick for the last two years? Not like sick in the head, but regular sick, sick-sick. I never really blogged about it because for whatever reason I thought it would be embarrassing or make me feel worse. Plus I wanted to be all super-woman and what have you. Or at least not a whiner. This morning it occurred to me, hey you ought to write about that. Especially because you’re feeling so great now.

I thought all this while I was driving home at 745A this morning from a 615A Ashtanga yoga class. It was awesome. It felt so good to stretch and sweat and flex. I felt really strong. Suddenly it struck me that 6 months ago I had to stop and rest while trying to walk up a flight of stairs between the first and second floors of our house. I had been undergoing treatment for Hepatitis C. From which I have been cured—or I should say, have had a sustained viral response, meaning 6 months post-treatment, no virus is detectable in my system. I can’t get the capital letters big enough to express the YAY that I feel about this.

I got Hep C when I was in a car accident almost 20 years ago. It was a really bad accident. Dreadful. I’ve never written about it, but a few weeks ago decided to give it a try. I thought I could get the story down in a page or two but after more than 1200 words, I still didn’t really get the story out. Still unfinished, but here is the work in progress. IT CONTAINS A SCARY PICTURE OF A PERSON IN INTENSIVE CARE (me), so don’t look if that kind of thing makes you squeamish. Or I should say I have written about it, but only to record the dream fragments and half thoughts that, to me, are the story. Since I have no memory whatsoever of the accident or the days following. But I did have dreams and experiences nonetheless… These are those fragments. It’s more like a long poem.

I don’t know if you know anyone who has Hep C or has undergone treatment, but there are a lot of us out there.

There are various genotypes of Hep C, but the popular ones in the US are 1A, 1B, 2A, 2B. Genotype 1 is more resistant to cure so the treatment is twelve months. For Genotype 2, treatment is six months. In both cases, the basic treatment is weekly injections of interferon (also used in some chemotherapies, I believe) and daily pills of something called Ribavirin. I had genotype 1A so I was in for the twelve month program.

Here are a list of the potential side effects. The basics: fatigue, depression, weight gain or loss, nausea, brain fog, and the ubiquitous “flu-like symptoms.” The not-so-basic: psychosis, colitis, heart problems, and hair loss. Oh please, don’t clobber me with these chemicals and make me fat and bald. This was my primary thought when beginning treatment. Well neither of those happened. I did get super-skinny though, going from an already not fat weight of 120 lbs (at 5’7”) to a frighteningly skeletal 109 lbs at one point. The biggest side effects by far were fatigue and depression. I didn’t get depression so much, but I definitely was whacked with fatigue, but I think they should say “weakness” instead of fatigue. I wasn’t pooped all the time, but I was so unbelievably weak. Like if I folded the laundry, I had to lie down for awhile. Had to rest while going up stairs, as mentioned. My doctor put me on anti-depressants about a month before treatment cause it’s recommended for those who tend toward depression, as I do and I guess it must have worked. But I totally had brain fog, which is great practice if you ever choose to become demented. I couldn’t retain information. (Although I could write. I wrote a book during this time. Go figure.) I developed all these coping mechanisms for remembering things like why did I come upstairs? What time did you say to pick you up? Do I turn right or left at the intersection? Everyone forgets things like this now and then, but I forgot them I’d say 80% of the time. So I covered myself in post-its. I learned to “put” certain pieces of information in various body parts—for example if I was supposed to pick someone up at 7P, I’d look at my right thumb and go, “7P. Remember that.” So when I looked at my right thumb, I’d get 7P. Don’t ask me why that worked, but it did.

Anyway, I made it through the year virus free. Sadly, I relapsed after 3 months. (The cure rate is 50/50 so it wasn’t a huge shock, although it was a huge bummer.) I decided to try again, this time a treatment specifically for relapsers and non-responders. 35% success rate. I just thought it would work. Whatever the odds are for most people, it usually doesn’t work that way for me, so I figured I had a 65% chance of being cured. Thus began another 12 months of a slightly different form of interferon, this time 3 injections per week and also Ribavirin again. This time it was worse. I had all the same symptoms as before, but worse and with the addition of ridiculous migraines. For the last 6 months of the treatment, I probably had 3-5 migraines a week. Plus anemia. Plus skin rashes. Plus a zillion other things I probably can’t even remember now. This time I did not relapse. I made it past the all-important 6 month mark, at the beginning of this year. My doctor sent me my blood test with a little smiley face draw on it.

About 3 months ago, I think I basically came back to normal although still kind of weak from 2.5 years of very little exercise and very low calorie intake. Now I’m about up to my normal weight and can once again do warrior poses, handstands, and a zillion chataranga dandasanas. Thank you, my body. You rule.

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  • Posted by:  Lee


    You might want to check out HEPV-L … the internet’s oldest information and support source for those with HCV:


    If that web address is messed up just google

    HEPV-L icors

    This is not spam. I’m a real person, a fellow meditator, and a former Interferon warrior.

    With Metta,


  • Posted by:  Ann

    Hi Susan,
    I am really glad that you shared about your healing journey. As you probably figured out, it doesn’t make you look weak to share…….it makes you look human…..and it awakens compassion in those who read, especially if they have gone through a similar physical struggle.
    Last summer, after months of being so exhausted that I could hardly get out of bed, (and joining a Master’s Swim Team that practiced at 6am thinking I just needed more regular exercise) I was told by a great endocrinologist that I had hypothyroidism. Wow – an explanation for the fatigue, brain fog, weight gain, depression, etc)! After beginning to take Synthroid among other things, I began to feel better day by day. Still not yet back to yoga classes like I want to be, but I have discovered the ability to be still and accept my limitations – no more Superwoman.
    I now share the story with anyone who has similar symptoms, because thyroid disorders often go undiagnosed or misdiagnosed in women.
    May you continue to heal and share your stories!

  • Posted by:  susan

    Ann, thanks for the encouraging comments.

    It’s so weird when your body just starts doing nutty things. And it’s reassuring to find a name for it, isn’t it? So glad the medication is helping.

    May you continue to heal & share your stories, as well!
    xoxo Susan

  • Posted by:  susan

    Lee, thanks for the link, fellow interferon warrior. All best to you.

  • Posted by:  Maria

    I find it very interesting that I decided to check out your blog today. Just yesterday I was talking to a friend about whether I should blog about what is going on me with right now or if it was too personal. So, I guess I will break the ice of sharing on your site!
    A year ago I was diagnosed with Mastocytosis. The doc that diagnosed me had never seen a case before and literally read to me from a book. She then sent me home saying that I was ok and not to worry.
    Mastocytosis only affects .01% of the pop (20,000 people in the US) so I figured the doc might not know what she was talking about. She didn’t.
    One week ago I went to see a specialist. Thank god! I finally found out that all the other weird things going on with my body were all related and that I am actually a fairly sick woman.
    Until my meds kick in (they are currently making me nauseous) I shall continue to have: flushing, uncontrollable sweating, temperature change sensitivity, unexplained muscle weakness, bone/joint pain, headaches and migraines, brain fog (I totally understand what you were going through. I loose my thoughts mid-sentence), acid reflux, random bouts of nausea, and I’m sure there are others that I’m blanking on right now (darn brain fog).
    So, I’m a very scared 23 year old. In my head I know that this illness won’t kill me, but my kneejerk reaction is still activated.
    Did I mention that there is no cure? And that I have to take medicine 4x day for possibly the rest of my life? I hate medicine. I never take it.
    Sorry if I just dumped a whole lot on your blog Susan, but it feels like a safe space and I think I needed it considering how the words are pouring out of me.
    So, thank you for creating this space. I hope you continue to heal and remain healthy.
    xoxo Maria

  • Posted by:  Terri

    i heart goes out to all of us that have had to endure treatment, it was one of the most difficult time in inmy life, i am happy to say the treatment did work for me, iwas geno type 3, stage 3, out look wasnt too good in the bigginning but i endured it and have been undectable for over a year now. most important thing i learned was to keep believing in yourself, life is good, and short so live it well each day at its best,

  • Posted by:  Terri


  • Posted by:  susan

    Terri, I’m so glad you’re well. It’s a hell of a treatment and I shake the hand of anyone who made it through! To your health, Susan

  • Posted by:  Crystal

    Susan, thanks for sharing and glad i found you. i picked up my two prescriptions today(interferon, and riboviron) the same treatment for 12 months is recommended for me. I have genotype1 didnt know about a b but anyway have had hep c for 10 years and never had levels of any seriousness and am currently still at stage 0 or no level……making any sense? well, i am freaked about the whole deal(which is why i havent started and it sits in the fridge) anyway any words of wisdom? I am 38 and am healthy overall just thought it would be nice to be free of hep c…..although docs have continued to tell me that sexually this is transmitted only 5% of the time….and that has some impact on my decision since i would like to marry again….but what scares me most is the side effects since i have two small children and am single mommy…..well i shall pray again…thanks

  • Posted by:  susan

    Crystal, how are you?! How’s the treatment going? I don’t have any words of wisdom except to say give it a try. You can always stop…

    I found the side effects to be very difficult but also totally manageable. I was able to live my life as I wanted. I hope the same is so for you.

    Wishing you all best!!

  • Posted by:  Sharon Griffith

    This is a great website. I too was treated for Hep C. I am Geno 1, Stage 2. I started my treatment in March 2006 and finished 2/07. I had all the usual symptoms and expected them but not how severe they were. I am still virus free, but that too has come with a price. I could not work for a year afterwards because my brain just did not work. My memory was gone. I thought I needed to train my brain again. Well I went back to work last March 2008 and lasted 3 mos before being let go. I have always had a very responsible high position making 70,000+. I started the search again and now am working in a great position but for $38,500 and I am still struggling with the memory process. I just got a grade from a 3 day cram course in something I do every day and failed the 2 1/2 hour essay. I still struggle with short term memory. I am worried that this is permanent. I guess I should contact my doctor to see what she thinks. Have you had those issues and if so did they go away? I would love to have dialog with those having these issues after taking peg interferon and ribovirin. I also took the two shots for white and red cells. God Bless Sharon

  • Posted by:  susan

    Sharon, so glad you’re virus free! And so sorry to hear that the “brain fog” is still with you. I would say that mine is about 80% gone. I would also love to hear from others about side effects that have lingered. (I still have hearing loss in both ears from the treatment.) I think you should definitely contact your doctor and also maybe check out sites like drweil.com or drhyman.com for articles and suggestions of natural supplements that promote brain function. I highly recommend both of these doctors.

    Will send all good wishes for success in your new job…Hang in there…

    Love, Susan

  • Posted by:  Brenda Murphy

    I would really be so greatful i you could talk to my daughter, she was just diagnosed with geno type1. I am truley scared for her, she is just 33 and has a baby of22 months old with a face of an angel. supposed to start treatments next week.

  • Posted by:  Brenda Murphy

    PLEASE we just feel so alone out here in left field.

  • Posted by:  susan

    Brenda, I’m so sorry to hear about your daughter. I did as well as could be expected on treatment, and I hope she does too.

    How can I help?

  • Posted by:  Lisa

    I start my medication for Hep c geno type 1 this Friday April 30 2010. I had breast cancer in 1996 and I went threw all the chemo and raditation. I think I can do this treatment God Willing just as I did in1996. I know it will most proably be harder because I was39 then and 53 now. I am ready to start and get this behind me. I stay tired and sleepy all the time ,so I am hoping maybe to sleep threw some of the hard stuff. GOD BLESS TO ALL.

  • Posted by:  Susan

    Lisa, how is it going?? I wish you all the strength you need to navigate this very difficult but also potentially healing treatment.

  • Posted by:  Terry

    About 5 weeks ago I finished my treatment of Riba and interferon for my genotype1 Hep C. I really had a hard time of it. I lost probably 2/3 of my hair, weight loss, weakness, had horrible headaches, wierd rashes and had to incorporate two other injections into the treatment (one for my low white blood count, and the other for my low hemaglobin count). However, I was able to work for most of the 48 weeks with all other available time spent on the sofa. At week 24, I was undetectable.
    Anyway, I got a call from my doctor on Friday and they told me the virus is back. I’m SO bummed out. So many things are running through my mind….like did “I” do something wrong, doubting God, anger, crying. I’m just really, really down right now.
    In 2 weeks I will return to the Dr. and we will discuss my options.
    I’m scared. But I suppose I did learn one thing during this whole ordeal…..I’m stronger that I thought I was.
    If you have just started treatment, I don’t mean to sound so negative. Two friends of mine who have undergone the same treatment are still undetectable a year out, are back to enjoying their lives and look like they feel great.
    Thanks for having a site where I could express some of my feelings/thoughts. Good luck to everyone out there.

  • Posted by:  Susan

    Hi Terry. The treatment is tough, and it sounds like for you it was particularly tough. I didn’t lose my hair, but I had all the other symptoms you list, as well as hearing loss. NOT a fun time. I’m so so so sorry you didn’t have a sustained response. Of course you would be super upset.

    The same thing happened to me–I sustained response for the majority of the treatment, but relapsed after 2 months. I decided to do the treatment for relapsers/non-responders–a synthetic form of interferon + ribavirin–and it worked. It’s been two years and my liver functions are still normal. Hang in there!!

    Keep me posted if you would.


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