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Spotlight: Living with Invisible Symptoms

  • By Kelly McNamara Keymaster

    So many symptoms of hep C whether emotional or physical are not visible on the outside. Let us know what it is like to live with an invisible symptoms. How do you describe what you’re going through to friends and family?

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  • By snowman666

    To my family always complaining of feeling so tired both mental and physical it’s draining dealing with rude people who act like I have the plague I tell them education is the best medicine look it up before you judge me now I have liver pain

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    • By CaseyH Moderator

      Hi snowman666! We so hear you on this! You are not alone in these feelings. I’m so sorry you’re dealing with rude people and are having to experience these frustrations. You’re right, education is a great thing, and learning a little about HepC and its side-effect can be so eye-opening for those who don’t understand. Great point. Please know that no matter what is going on, we’re here for you whenever you need a friend to talk to. Thank you for sharing with us, and we’re glad to have you in our community! -Casey, HepatitisC.net Team

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  • By Gypsy

    I was diagnosed with hepatitis C about 10 years ago. I was offered Interferon and Ribavarin. I declined. My symptoms worsened about 2 years ago where I had debilitating fatigue, brain fog and couldn’t even carry a normal conversation. It is odd because my liver functions were normal. I was bedridden for 6 months. I began generic epclusa and within the first 2 months I had bruised legs with dark brown spots on my legs, going from anger to depression. My emotions were all over the place but I had mostly slept. By the end of the 2nd month of treatment I started to have some feelings of well-being, decreased fatigue, able to remember more and do some activities. By the end of the third month I almost felt back to normal. I felt I got my old self back. Since I am genotype 3a, I took 4 months of therapy. I had no cirrhosis, fibrosis or other problems.

    I received 6 units of blood after bleeding out after a hysterectomy back in 1988. The blood was given over a 2 day period. I am sure this is how I got it. I had 4 doctors misdiagnose me and ordered my own tests online, as it is legal in most states. At the time the genotype and viral count were not available, so I had to go to a doctor to get it. Although he said it was false positive I was persistent in knowing what type I had even though he did not think I had it. Once it came back he asked me to get an appoint ASAP. I decided to go to someone else who would listen to me. I have done a lot of research since the time of starting treatment and was amazed at all that hepatitis C can do. It not only affects your liver but affects you all over. I now try to support others and trying to get the word out so that hepatitis screening will be done routinely. I have read some of the stories on this website and they are truly inspiring, so thank you for sharing.

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    • By CaseyH Moderator

      Hi Gypsy! Thank you for taking the time to share all of that with us! WOW! What a journey you’ve had. First off, I’m so sorry to hear about all you’ve had to endure, however, I’m SO GLAD to read that you’re starting to feel like your old self again, and that the epclusa treatment went well! YAY! I’m also so glad to hear that you were such a strong advocate for yourself and for your health. Your research, persistence, and strength are incredible. We’re so glad to have an advocate like you in our community, and that you’re dedicated to supporting and educating others. Amazing!! Thank you again for sharing. -Casey, HepatitisC.net Team

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    • By klk370

      Thank goodness you did not take interferon with ribiviran as your treatment. I can tell you that all those symptoms you went through, I continue to go through after over seven years being virus free. The pharmaceutical company still refuses to admit that there have been long term side effects for many of us who did take interferon. Hundreds of people and more, who are,experiencing similar side effects post treatment. I warned everyone i could, not to take interferon. I have severe fibromyalgia and chronic fatigue syndrome as well as other health issues. I function at less than 30 percent of normal. I relate to what you went through, because I still go through it. I wish I had waited for new treatments. I was genotype 3a. I do my best to stay grateful for what I can do, however my life has been changed forever. I don’t give up hope that more research will be done about post –treatment illness. Thank you for sharing your story..

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  • By acemoo

    No one knows that I have hep c. This is why I’m glad I have you guys. I know people that I know will judge even though they have know right to. I have terrible anxiety and depression but I put a happy face and attitude so I’m doing ok

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  • By youngdumbandbroke

    I noticed i didn’t have much appetite for food that i had before. Then I start to feel worse body pain and anxiety first i thought its because i used to inject heroine back then but i felt its worst than withdrawls from drug use. So i got my blood tested and result came out to be +ve for HCV gen 1a . I was terrified then. But after taking similar medicine to epclusa i.e. Velasof in India i feel fine after 6 months. Now i eat more than ever before and work well in farm with no fatigue. But my viral load is till at 27100 . it came down from 500000 . but my liver function test came normal. My white blood cell come come up from 8 to 12.4 .
    But i feel better than before.
    Peace.

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    • By Rick Nash Moderator

      Yo @youngdumbandbroke

      First off, great name, it’s a sick track. second off i’m glad to hear you’re feeling better after a round of treatment. I felt the same way after my round of Harvoni failed. It’s like the liver gets a lil break. I hope you can try another treatment soon if that’s your inclination, so you can feel even better! I personally slew my dragon last year, and the difference is monumental.

      -Rick Nash (Dragon-slaying 6-time treatment vet)

      PS Did you go to India, have them delivered here, something else, or am I misreading your statement?

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  • By youngdumbandbroke

    Thanks 🙂
    I’m getting tested by a different lab now…
    I’m living in India
    Luckily treatment cost is reasonable in India than US or Europe
    And much faster in term of doctor appointments and tests…
    In my Punjab State citizens have free treatment too..
    I get prescribed equivalent to epculsa*
    Its called Velasof nearly $7500 for 3 months

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    • By youngdumbandbroke

      Thanks 🙂
      I’m getting tested by a different lab now…
      I’m living in India
      Luckily treatment cost is reasonable in India than US or Europe
      And much faster in term of doctor appointments and tests…
      In my Punjab State citizens have free treatment too..
      I get prescribed equivalent to epculsa*
      Its called Velasof nearly $7500 for 3 months

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  • By Rick Nash Moderator

    @youngdumbandbroke Yeah, the Indian government fought hard to keep the generics, I’m glad they’re taking proactive measures! it’s always interesting seeing how different countries respond to Hep C. Australia has some equally mindful programs.
    Do you know what your RAV(resistance-associated variant.)s were? Because if you have them, RAVs can help guide you and your doc to find the right treatment. It took a while for me to find a treatment that didn’t solely rely on NS5A, NS5B, thankfully there are lots of options now!

    -Rick Nash (Dragon-slayer)

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  • By Rick Nash Moderator

    @youngdumbandbroke Yea, I was 1a as well, my doc tested me for RAVs and found a resistance to ledipasvir, which allowed us to determine a treatment which didn’t contain that, and thus was more appropriate for my situation.

    “Zero” isn’t zero, because it’s testing a sample of blood it never actually has a zero number, it has a less than 42 or 15 depending on the test (some may even have numbers between or around that.)

    Those numbers are considered Undetectable because it’s pulling a sample of blood, it has less to do with the efficacy of anything and more to do with the the potential for error inherent in sampling statistics. Which means it’s functionally zero. It’s one of the reasons the term Sustained Viral Response is used by medical professionals and drug companies rather than cured per se.

    While on Harvoni I was able to “zero-out” four about four weeks, until it came back because of my RAVs.

    So functionally, yes it can go down to zero, but that’s the reason it takes 24 weeks to confirm that the virus remains undetectable.

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  • By klk370

    I went through treatment for genotype 3a over seven years ago. I was given the maximun dose of Pegasus interferon with ribivarin fofor 6 horrendous months. I am now suffering from chronic illness. I have both fibromyalgia and chronic fatigue syndrome along with gastritis and other health issues. I no longer have detectable hep c virus. I know that many people all over the world are also suffering from permanent side effects after treatment.
    Is there any help for those of us who developed chronic illness post treatment? I did not research interferon and possible side effects before taking it. I wish that I had, now. How many of you are having health issues years after treatment?

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    • By CaseyH Moderator

      Hey klk370, I think I just replied to another one of your comments in a different forum on brain fog. Thank you for sharing even more with us here. We’re so grateful you’ve found our community. I’m so sorry to hear about the chronic illnesses you now have. Hopefully, others in the community can chime in on their experiences with any chronic illnesses post-treatment, and how they manage those. However, in the meantime, have you talked with your doctor at all about treatment options for these conditions? We’re hoping you find some relief soon. Please know we’re here for you, and hope you’ll keep us posted on everything!! -Casey, HepatitisC.net Team

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    • By carin

      Hi kik 370 In 1992 I was diagnosed with ovarian cancer, during treatment it showed I had hep c 1a . In 2005 a year long treatment of ribavirin and interferon started , hit me hard with flu symptoms, being tired and depression. Hep c came back in a month, but I never had any lingering problems from treatment. In 2017 I started a half year of Harvoni , just finished 2 weeks ago, again, very lucky me ,only suffered from hair loss
      I have to say, after the ovarian cancer treatment ,I could not remember simple things and had to quit the driving job I had. , I changed my life, what ,when, and how I ate , and exercised .Made sure all was green fresh and just healthy, took vitamins and minerals, once in a while I give into fast food, just to satisfy the cravings I get, like french fries ,( it sounds so close to exercise).I do have a problem with platelets, they are low, and if I bumped my leg ,my foot would swell with pain and a weird brown discoloration happened and stayed, antibiotics helped, but I found a natural product and no problems with the clotting any longer. I have decompensaed cirrhosis and a bit anxious about the next blood tests as my ast and alt are still high, 39 and 33, down from 128 and136, still low platelets, but all else is normal.!!
      I did get my first treatment for free from the manufacturers, it was very easy to deal with them and they responded fast .
      I am sorry you are having such a bad experience, wishing you the best. Carin

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  • By klk370

    I do have some care for my illnesses post treatment. I also belong to a wonderful online group that helps,with managing both chronic fatigue syndrome and fibromyalgia. These are both debilitating illnesses that take a lot to manage. I was very athletic and fit before taking the Pegasus interferon and ribiviran.. I have a genius IQ, yet the brain fog is so intense it limits me. I was going to school to finish a degree but had to quit. I am not able to do much at all anymore. The severe pain and fatigue both continue to haunt me. My. head hurts so bad right now, I can’t finish this post. I know there are others who did not get better after treatment. I wonder if anyone else who is experiencing this is a member of thia forum?

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  • By Randy Moderator

    Hi klk370.
    I do know about CFIDS and fibromyalgia as I was diagnosed with them in 1993 before I got my Hep c diagnosis. The body pain and brain fog/fatigue are no fun. Was their etiology HepatitisC virus was always my question after knowing I had chronic Hep c. I’m sorry you’re still having to deal with those symptoms. After curing 3 years ago my brain fog cleared for the most part but I still get brain fog at times. I also have cirrhosis which, for me, I believe is the reason for any brain fog..( and I’m 66 years old 🙂 May I ask what stage of liver disease you have? The answer may lie there. I also still have some body aches and pains; fibromyalgia is thought to be an immune dysfunction disorder or autoimmune in nature so a check in with a rheumatologist might give you some answers and help. I really hope you feel some relief soon and find some answers. All best to you- (Randy, Community Moderator)

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  • By klk370

    Hi Randy,
    My liver enzymes were out of range when I had Hep C, and my liver was inflammed but not scarred, according to the biopsy. I was feeling fatigued somewhat before treatment. During treatment, I had terrible bone pain. I had horrible moods where i would cry for hours for no reason at all. The whole six months was a nightmare. I never did feel right after the interferon treatment. My doc said I would improve in a few months. Instead, i got worse and worse. I was diagnosed with Epstein Barr virus initially. The pain, fatigue and brain fog just got worse. It took about year to rule out every thing else it could be, and finally was diagnosed with fibromyalgia and chronic fatigue syndrome bought about by the interferon treatment. I have been to rheumatologists, neurologists and gastroenterologists. I am currently under pain management and weaning down off of most pain medication due to new government regulations. I will be turning 50 in May. I never had health issues at,all, pre treatment
    I know I am not alone in my experience with the Pegasus interferon., because I can read about others with similar symptoms years after their treatment. I am glad that I am virus undetectable seven years later. I am not so happy about the loss of life.. I am not looking for. any quick cure. I have been ill for some time. There is no cure for cfs or fibromyalgia. I am happy for you that a lot of your symptoms improved. I would guess that your cirrhosis definitely could be causing other symptoms. I am sorry your liver suffered so much damage.
    Wishing you the best.
    Krista Knight

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  • By klk370

    Actually, there are documented cases of people having lasting side effects post interferon. There are research studies with hundreds of participants who are having side effects years after their treatment . It is not true that interferon cannot do lasting damage. Google “post interferon syndrome” and one can read about others who never returned to normal post treatment. I am one of those. I know interferon is made in our. bodies. It does not mean it is safe to give high doses to people. My life was changed drastically and forever, after taking Pegasys interferon plus ribiviran for six months.
    Sincerely
    Krista K

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  • By klk370

    Hi all,
    To be moee cleat. the majority of people who did take interferon as a,treatment came out ok. I know several people who did so. There are enough people, however, who now suffer long term side effects that it js a big problem. I am not surprised that two people who took interferon came through without any long term ussues. I am surprised thaf I am being told here tbat interferon could not be the culprit. If I were the only one with fatigue, pain, brain fog, gastritis, eye problems etc, I would think I developed chronic illnesses for some other reason. The fact that hundreds and thousands of people all over the world are aso suffering from exactly the same symptoms, or similar made me think. I wish I had dome more research and waited fof new treatments. I finished treatment in 2010. It has been eight years after treatment and I feel worse than ever. All I can do is try to manage my symptoms as besr I can. I cannot undue what has already been done.
    Thabk you,
    Krista K

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    • By Rick Nash Moderator

      @klk370

      I don’t doubt your experience, I googled Post Interferon Syndrome and I see where you’re coming from.
      The old injection treatments, had unusual and unfortunate effects on some people. The sheer range of different reactions beyond the initial warning labels seems to only grow with time. I, myself, nearly died as a result of the side effects during my third treatment due to the addition of Incivek, and my teeth and skin were permanently altered due to this older treatment.

      My caution comes as I don’t want you or others to waste time chasing something that isn’t there. Which in your case it is there, but from what you’d stated (first two comments) so far when i’d commented, it led me to believe that the issues you were experiencing more closely associated with the complications of advanced liver disease than common after effects of interferon. When you expanded on it, I clearly see that you’ve already investigated that in your search for answers.
      I don’t mean to imply that I don’t believe you or that the suffering you’re experiencing is anything less than it is.

      I recognize your fight beyond Hep C, and I don’t want to diminish your truth by any means. I just wanted to make sure your focus was in the right direction. Because I’ve been down rabbit holes, and I think that’s something a lot us who face or have faced Hep C are familiar with. And it’s an awful experience, so i’m sorry if this conversation has caused any additional frustration, that is never my intent.

      -Rick Nash Six Time Treatment Dragon Slayer and Transplant Recipient

      (There was a glitch in my post when I went to correct some misspellings, it got rid of the post from this forum somehow, I didn’t intentionally delete it, but i’m glad its gone nevertheless.)

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  • By petrapaskev

    I have not started the treatment yet. I am waiting for the approval for the insurance. My body is really starting to ache. It is scary and yes I do feel alone. I have Geno type one. I guess it’s hurry up and wait

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    • By carin

      Hi petrapaskev I know waiting for treatment is hard, I do not know what meds you are getting but my experience with Harvoni was great. . Now is a good time to take extra care of yourself , hydrate, lots of rest, music, funny movies, get your mind relaxed and you will be starting in no time at all.Also look now (in case they do not approve) for free or reduced cost treatment. I hope you will be starting soon .

      All the best to you, Carin

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  • By Randy Moderator

    Oh Krista… please forgive me for not seeing that you treated with P/R!! I just responded to the cfs and fibromyalgia issue. Absolutely there are data and so very many people suffering from post interferon treatment. I didn’t treat with the standard of care back in the day, I waited, and got cirrhosis. I know hundreds who are not the same after P/R. And manage is what they do like you which doesn’t make it easy. I’m hoping Sue will see this and share experience with you, in fact, I’ll tag her. Daryl as well and anyone else in community. Again, I’m sorry I misread your post and that you are left with severe post treatment misery my friend. I won’t say hang in there because I know you’re already doing that. I really wish you a great modicum of relief…. (Randy, Community Moderator) and friend!

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    • By klk370

      I totally understand what it feels like to get diagnosed and then the waiting for treatment to start. I remember recognizing symptoms that I was not aware was llinked to my hep c before i started treatment. I was fatigued and achy. My taste buds changed. My lower legs got really itchy. It was scary knowing that the virus was continuing to attack my liver and that it had been for some time. I got really conscious about leaving any blood anywhere. My gums had started bleeding really bad, and I would wipe up blood drops with bleach. Know that you are not alone.
      It seems to me that the new treatments are much better. I really hope so. I hope you get approval soon.
      Klk

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  • By klk370

    Hi all,
    I wrote a respinse to both Rick and Randy, but I guess it did not post. I said that I appreciate the support and neing understood. I M so glad that I joined a group that is opem minded. I also understand what you mean by not chasing down rabbit holes. I only go to the ” post interferon syndrome “sites once in a great while to see if there is any new information. I am glad I did, as I fojnd this forum. I don’t dwell on how I became ill, because it would only cause depression. Instead, I. do what I can to manage my current illnesses. I beling to a wonderful online group with people who have cfs and / or fibromyalgia. I would be happy to share the website address with anyone who also has these issues..
    It wpulc be nice if big pharmaceutical would admit that long term side effects exist. I won’t hold my breath for that day. My liver function is ok now. I take care of jt and don’t drink, smoke, or take non prescribed drugs including Tylenol. My life has been changed forever from taking P/R treatment, and all I can do is be happy for others that new treatments are available. All the wishing in the world won’t change my predicament. Hooe, on the other hand, is a wonderful thing.
    Best,
    Krista K

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