Hep c

Hello I am new to this forum and I was dignosed with hep c in sept 15 ,I got from a tattoo..only had it for around 7months. I have had a liver scan with no scarring or cirroiss. I have been researching like mad on the internet alot of postatives and negatives..I have no support network and feel very isolated because i know what this disease can do. I am a 28 year old that its currentley suffering depression and anxiety. I do have a appointment on Thursday to determine geno type and treatment options. Some kinds words would be appreciated.

32 Replies

  • Hi Simon, welcome to 'on here' where you'll find lots of helpful friendly advice and support, I am sure.

    My offering to you is the following....... that because you have discovered the hep c at your young age and because from what I gather there ARE treatments that can positively cure it in many cases SO there is NO need for worry or anxiety.

    Secondly be kind to your live,r and try and refrain from alcohol and eat plenty of healthy foods that do your liver good.

    Consider yourself lucky that you know you have got it in time to control it. It's only when it goes unknown and unchecked that it causes the damage.

    Kind Regards to you, and don't worry

  • I'm no expert in Hep C, but I have experience in liver disease having had a transplant about 18 months ago. Because the cause of your liver disease has been identified and can be controlled you are in a pretty good place, and as liveronmymind says try not to worry too much.

    Obviously this is easier said that done but you are in no immediate danger. Google isn't always your friend and can add to the anxiety. It's also great that you found this site and I would advise coming here for advice and answers.

    One thing I know about liver disease is it's a long slow burner. It's going to take months\years\decades.

  • Is it a good tattoo? Hope all your tests give you a full picture and stay positive.

  • Thank you guys for your kind words..is there any other suffers on here? I have seen some post but haven't been active for awhile, just looking for same people in my situation.. q_62 no it isn't the best tattoo haha

  • Not glad to hear you have hep C but glad that it has been diagnosed so soon after infection. How was it spotted, have you been acutely ill? At the moment you are in the first few months of infection so the docs wont be doing anything other than monitoring you i guess. Most of the people who are treating in the UK have been infected for 20 or 30 years but here's hoping you wont have to wait that long, lol.

    Try to avoid 'Mr Google' and rely on the British Liver Trust information britishlivertrust.org.uk/li...

    There is also a downloadable leaflet on their website.

    Can you advise any of your peers or other people about this tattoo parlour and not to go there ...... or was it a back street on abroad?

  • Hum, I have done research on google for years, you do need to know how to distinguish between the articles that can improve your health and lifestyle but otherwise I would not have been doing so well for so long. So I disagree about google but you need tough skin for all the info you will come across. I have often had my doctors give me wrong info, dismiss serious symptoms, on and on. I do not depend solely on their advice. I take no meds, I cycle long distances and exercise hard 5 to 8 hours a week. And right, there are few here with hep c. I am now 64. Good luck

  • i agree the internet via Google is fab.  If it had been available 30+ years ago when i was diagnosed with HBV i would most likely not be as ill as i am now.  However i still feel that for someone only diagnosed 7 months ago, something like our British Liver Trust (this forum is BLT moderated) leaflets are a good starting point.  

  • Me too, its great here, lots of help. I believe in gathering all resouces.

  • Hep c 42 years

  • hi bolly thank you for your reply no I was not acutely ill..i had random blood tests done just to check my overall health..i was shocked at the diagnosis as I didn't know anything about hep c but on learning more about it I got more concerned and still am.. I have been to the doctors today as I had not been sleeping well as well as been depressed. She gave me citalopram and zimovane to help me sleep. I had a tattoo done by a ex house mate unfortunately, In the uk hep c is not a massive thing and I think more awareness should be brought to it. I have an appointment with my liver specialist in two days do discuss treatment and the results of my resent blood test, I no it sounds selfish because a lot of people have had it for many years but I want to be treated, not with the old treatment..i don't think I could cope on the old treatment interferon. I haven't drank a drop of alcohol either.. I would like to know more about other suffers and offer my support as we can beat this together with the right support and advice

  • Right steer clear of interferon, it causes debiliating effects on the neurological system that never heal, the virus also does that.

  • Cat are you in the uk? 

  • Hawaii

  • Is the ex-housemate Hep C positive and do they know that the tattoo they gave you has possibly been the route of infection?  It might help prevent others being infected if they were advise of this?

    The Hep C trust estimates 0.5% of the UK are Hep C positive, so it is quite a big thing.  Its just we dont think about it unless it affects us or someone close to us!  Then we suddenly find out how significant it is.  I presume at school during SRE classes you were all told about the risks of blood borne viruses, along with sex education, drugs, smoking etc.

    The British Liver Trust have ambassadors for Hep C, and have meetings with the drug companies about the availability of the treatments.  There is a charity called the Hep C Trust with a help line and load of useful information plus all the latest press releases as they are published. 

    Every so often there are news stories about health workers or dentists whose patients are being contacted due to possible infection.

    Etc etc

    So in the UK, the information is there, but as i say its probably not something people notice until it affects them directly.

  • I no long have any contact with this person or know if he still lives there. I have wrote him a letter explaining his lack of sterilised equipment has lead to my hep c. 

  • Simon so sorry to read your story. I agree with Bolly, the Consultant will monitor you once your genome has been established. Thank goodness your HCV has been caught in time. You already know you have no cirrhosis or scarring. As Bolly says, I am one of those people who had HCV for over 40 years through no fault of my own - from a blood transfusion.

    I can understand your anxiety but please remember that this forum is here to listen to your anxieties and give advice and support.

    Just to put your mind at rest, neither my husband, son, daughter, grandchildren have HCV.

    From what I am reading, I believe that treatment will be available to everyone soon.

  • You are young, the virus is young, your chances of getting rid of it are excellent. But do not get treated with interferon or ribavarin. There are many new drugs. I just cleared the hardest geno type and I am 64. I got it when I was 20 and it was found at age 50. I am happy to share any info with you. I know much about hep c. Start exercising and eating well. Hep c has many symptoms, anxiety is one, depression is one of the largest, fatigue is another. Good luck to you, many of us accidentally end up with hep c. I would contact where you got the tattoo, they are not using disposable needles, thats how you were contaminated.

  • Simon I think you will find people in similar situation to you. I have met someone who got hep C from a Thai tattoo. Working with him he really needed mental health support. anxiety and depression are typical symptoms as above. Ask for counselling now.

    Best of luck stay positive

  • hi there, i got my Hep C from an old tattoo done in the late 70s, didnt find out till 2011 so well too late and ended up having a liver transplant. Hep C now gone due to the brilliant new treatment Harvoni. The thing is don't bang yourself over your head about it, it done now and the only way forward is to to concentrate on staying positive and getting rid of it. Discuss with the consultant the best ways and treatments to do this ASAP. As said before stay off the alcohol as you want to give your liver the best posible chance to get better. It should recover and you are very lucky to have found out so soon before it does the terrible damage it does. good luck with everything, stay as strong and as fit as you can and keep smiling. x Ruth :)

  • Well today is the day I find out what type of geno type and discuss treatment.. I Am neverous 

  • Well that was eventful after waiting nearly a month to see if I get treatment my nurse (only one treating hep c in my area) did not receive my blood work only my viral load which is 22965..had to take a second blood test  and wait again for my geno type although she said I won't be receiving interferon..gave me a British liver foundation leaflet gave me a lot of comfort.i will be seeing her in around a months time.. .mean while I have been jogging and trying to eat better..I am not over weight and I don't drink.. What supplements are best do you guys reckon.. Just cooking my veg and salmon 

    Hope you guys are having a good day 

  • Not sure about supplements just healthy eating and try to avoid salt as much as possible. I hope you find out your geno type soon and that you can cured ASAP. stay positive :)

  • Thank you dizzy I have started jogging at least 5 miles a day..avoiding salt is hard as it is everything...I am doing well buy eating fruit and veg il admit it is difficult as I have alway reached for the quick microwave meal but am learning fast.

  • Hi I know the salt is in everything, i got well obsessed with looking at labels etc I couldnt believe the amount that is in everyday foods, especially the ones that you think are good for you!!!!!. Just try and find alternative flavouring --garlic, pepper etc. i have re-read some of your previous messages and noted that your doctor is treating you for depression, the Hep C causes similar symtoms and is often mistreated as doctors just think because you are down you have depression but not necessarily so. if you can, try and do without the meds, now you know what you have you can now deal with it in a more logical way. if that makes sense. the Hep C is curable so don't let the little s**t get you down. stay strong and healthy and keep going. good luck with it all. keep smiling :) x

  • My doctor knows I have hep c and is helping in anyway she can..I have done more researched into Aniti inflationary foods..bought some mile thiskle..I recived a letter this Morning explaining I have a follow up appointment in 3 months and will contact me 6 weeks prior to arrange the appointment.. Feeling let down at it could be months before I am on treatment. Has anyone else's experienced this with nhs? :)

  • Its not at all unusual for there to be a wait for Hep C treatment Simon.  There are more patients wanting treatment than there are funds to pay for the treatment.  Each course can cost up to £8,500.  That's asthma inhalers for 2,000 children, or 12 weeks worth of kidney dialysis.

    Depending on genotype, i think (others are more up to date than me) that the criteria for being treated using the new medications is that you have to be pretty poorly, a lot more poorly than you at the moment.

    Frustrating though it is, time is on your side, you are not going to keel over and die in the next year or so.  And its worth waiting for the new meds, dont be tempted to treat with interferon and Riba which is the 'old' treatment as it has side effects which some find worse than the Hep C itself.

    Look after yourself as best you can, dont give up, and make sure you attend all follow up appointments as that keeps you 'in the system'.

  • Thank you bolly I don't mean to sound like a spoilt brat...and I no there's a lot more people in need of treatment, I just have a lot of questions..I eat veg and fruit and jogging at least 5 miles a day..I smoke but I need to cut that out but finding it difficult under the circumstances but am trying..I don't drink either..I intend to stay healthy and trying not to worry about it but it's always there, just wanting to live a happy  healthy life as much as anyone else.. I hope in time this will make me stronger as a person..all the stuff on the internet scares the daylight out of me seems I can't have a quiltey of life 

    As far as intervferon goes I won't go near the stuff..thanks you so much for been here as am still struggling with the diagnosis 

  • You dont sound like a spoilt brat and this is a good place to ask questions as there are lots of people on here who have either gone through Hep C treatment so can advise on the new drugs, or are like you waiting for access to the new drugs.    

    I understand there are long gaps between medical appointments and its during those times when the questions pop into your head that you can come on here and see if anyone can help.  

    Just bear in mind that this is a mixed bunch, some with liver disease caused by faulty genes, some with autoimmune liver diseases that have no cure at all, some who have had a wake up call after drinking too much over the years etc.  Hep C and Hep B and alcoholic liver disease ALD are sometimes described as 'lifestyle' acquired, ie the patient made a conscious choice to inject or drink or whatever.  Whereas the genetic or autoimmune diseases we have no choice about.  

    Its amazing how an awareness of ones mortality kicks us into a long hard look at our lifestyle, and its the time many people make major changes.  Up til then we thought we were invincible, ha ha.

  • Hi Simon,

    I got hep C from a blood transfusion about 30 years ago and still don't have cirrhosis, but the virus does affect everyone differently. You should be seeing a specialist every six months to monitor your condition. That would mean a blood test every six months to check have well your liver is working and a ultrasound once a year, a painless procedure. If your condition deteriorates, they will know and you should be offered medicine. At the moment, only the sickest are being offered meds such as Viekirax but by hopefully that will be changing over the next several years. These are expensive and the NHS has been trying to get the prices down.

    I've had treatment in the 1990s with interferon and then again several years ago with interferon plus ribaviron. Needless to say neither worked and the side effects were horrible - like have the worse flu ever for months and I lost hair plus the ribaviron caused a lot of itchiness. Now fast forward to today. I've just started taking Viekirax (I just managed to get treatment - it's been touch and go for several months with first being offered and then having it taken away). After 2 weeks my viral load has dropped from many thousands to 56, so I think finally I'll be rid of the virus. The side effects are minimal compared to the old drugs - much of what you will find on the internet will talk about the side effects from interferon, so ignor them. I mostly just feel a bit tired but my brain seems to be a lot more energetic for the first time in a few years.

    For most people, chronic hep C takes a long time to do any damage, but try to eat healthy and say goodbye to alcohol or at least drink only moderately.

    This website has a lot of good information for hep C sufferers in the UK: hepctrust.org.uk/

    Good luck!

  • Hi Marion thank you for your reply..I feel let down by the nhs..i want treatment now so I can but this behind me and live a good life..it is dreadful I have to wait 3months to see my specialist again to discuss treatment..if the sickest are only being offered treatment how come you have been offered it? Without cirrhosis? Just feeling let down. 

  • Hi Simon - To put things in perspective, like many others, I haven't been able to get on with life for 30 years. I had volunteered for drug trails but they mostly accept only people who inject drugs, so I didn't qualify. I may not have cirrhosis yet but I do suffer from symptoms of hep C. I rarely sleep through a whole night (probably three in the last five years) and I have persistent pain. My fibroscan showed that my liver has been compromised.

    I was offered treatment last summer, which would have involved interferon, ribaviron and a third medicine, and it was due to  start in October/November. Bearing in mind that I knew there would be better treatments available, I opted to take it as I was concerned about NHS funding for the new medicines - and having been on two of these medicines before I know exactly how bad the side effects are, so this says something about how desperate I've been feeling.

    In November I was told I had to wait until January as the third medicine hasn't been made available yet (sorry, I can't remember what it was). In January I was told I should start treatment 1st February but it has been changed to Kieravax, Exviera and Ribavirin. That was good news for me and worth the delay as the length of treatment is much shorter and their side effects aren't so bad, though I know I do react badly to ribavirin.

    My appointment was changed to mid-February and I was told treatment woudln't start until 1st March, but the would do my bloodworks etc. At that appointment, however, I was told the person who makes the final decision (in another city) had in principle agreed to myself and three others being treated but would not sign the paperwork. A week later I was told I could not have treatment - only 11 people in the whole region were being treated per month. Two weeks after that I was called and asked if I would be willing to be put on a waiting list - if there weren't enough sick people in our region, I would be approved for treatment at the end of the month. I got a call the last week in March and started 1st April. I've also been told that restrictions have now been tightened even further, and I think this was a once only situation as I had been offered treatment and then it was taken away..

    The NICE guidelines make clear that anyone with hep C should be given these medicines. The reality, however, is that to treat one person the cost is somewhere around £35,000 (I can't remember the figure) for Viekirax and Exviera for 12 weeks. These are expensive drugs.

    So as frustrating it may be for you, there are many people waiting for treatment who have been waiting for years. My husband wanted children and I had to make the difficult decision of exposing both my husband and unborn child to hep C. Fortunately, neither have it. These are issues you probably won't have to deal with for long. In all likelihood you won't have to wait anywhere near as long as many of us have.

    Being newly

    diagnosed, I can see why you are so frustrated, but while you may not

    get treatment this year, you may do in the next year or two or three. In

    the meantime, take care of yourself and try to remember that at least

    you won't be waiting decades for a cure.

    Having said that, I have written to my local MP to query why the NHS is not following NICE guidelines to make this treatment available to everyone. Plenty of research states that earlier treatment is better and in more severely ill people, treatment is twice as long, so twice as expensive.

    The Hep C Trust - hepctrust.org.uk/ - would like to hear from people who want treatment and are being turned down. My local outpatient care department is encouraging their patients to contact their MPs. My local MP has said he will speak in Parliament about the subject.

    And when you do get treatment, also remember that it's not a vaccine so you can be re-infected again. If you go for another tattoo, make sure you go somewhere that properly sterilises their equipment.

  • I will not be getting any tattoos what so ever..there is only one hep doctor at my hospital in York..i find it hard to concentrate on life with this dragon on my back and it feels I have had no support from her..feel full of despair for the future and I don't feel the same person as I was a year ago..it has zapped all the happyness out of me. Sorry for moaning but I need to vent lol x 

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