HCV treated with Harvoni Information genotype 1a/b

This is an update regarding my Hepatitis C or HCV.

In 1987 I was feeling tired and my skin had very slight yellow tinge...which others thought was a suntan. My sister in USA prompted me to have full blood tests to find out if I contracted anything. My GP said it was probably due to having two small children. I was flu like for a few weeks after this, but tiredness remained and yellow tinge was not so pronounced. My sister said if GP did not do blood test have it done privately, I went to Bupa Well Woman Clinic. They did a whole series of blood tests in addition to scans, cervical smear, ultrasound and loads of questions. Everything was normal...except my LFT (liver function tests). My ALT and AST (there is a website I have mentioned on many previous post regarding understanding blood tests, what to look for)...these are the two main marker for liver disease as are GGT and ALP. All mine were raised most just above normal except AST which was 25 points above normal range. I referred back to GP. Luckily, my usual GP was away...his take is woman=all in the head=emotional/imagining it...another GP, who had been practicing in Canada but returned to UK said that in US and Canada there has been raised incident of non A non.B hepatitis (now called hepatitis C or HCV) in the population through contaminated blood.

He referred me to Liver Specialist in London on NHS who dealt with this and could run virology test to see if I was specifically infected with this virus. He was Prof Hodgson...ran the test and advised me what to do next as the test came back positive. Explained about 500 functions of liver and that it was important to keep toxicity levels/exposure to my liver down. Both said it would be very wise not to drink alcohol...no cure for this...yet. In 1992 I was told it was HCV genotype 1b and the only treatment was from hell and 40% cure rate..maybe after 48 weeks of injecting interferonand taking ribovirin. My new GP said I would be okay to drink moderately why should I deny myself...I said that was bad advice as my HCV was already killing off more liver cells everyday than a couple glasses of wine a day...so, I ate healthily, reduced my exposure to stress and toxins and never drank. I felt fine....he never referred me to a liver specialist, which your GP (guidelines) should do for check up, full blood tests(HCV affects all your body, like thyroid, immune system....even gets into spinal column fluids' brain fog for some) and Ultrasound and Fibroscan.

When I moved to Brighton area my new GP sent me to liver specialist straight away as a matter of procedure for someone with HCV...and the liver specialist nurse had my liver scanned/Fibroscan. It showed on second scan had the beginning stage of cirrhosis. And my GGT ALP AST ALT were all raised well above normal each visit was worse. All I had was more indigestion and deep fatigue more frequently.

I knew new drugs were on the horizon 2014...and Harvoni just pasted FDA after all clinical trials. I told my liver specialist nurse that was the drug for me as I researched all the others like Abbvie Pak which is much more toxic to liver ironically, esp if you have cirrhosis and you have to take at least 5-6 pills a day and are closely monitored..more trips to hospital for some...it does cure, but ...As I have lichen schlorsis (an autoimmune skin disease..if you have it get checked for HCV, very likely you may have HCV) which increase skin cancer risk. AbbieVie just complicated the picture and long term risk with toxicity in blood to patient are unknown with this condition as it is so new on market.

So, I asked to be put on Harvoni. My liver specialist nurse fought my case with commissioners but the NHS said Abbvie was choice because cheaper and clearing HCV for my genotype...with drop out rate 2% for Abbvie and 0% drop out rate for Harvoni..They are equal, really. I argued about my condition and risk long term...they called back and agreed to put me on Harvoni.

My first month delivery arrived...I took it in morning upon rising drinking loads of water(60litre a day) because it is better for side effects and you seem to have more energy from onset of taking pill..This worked for me, everyone is different. Also, I choke very easily, so swallowing with large amounts of water good and taken within the same 2 hour window (8-10:30am) every morning. I did not change my diet, ate after taking pill...and got on with it. I did not have any symptoms...in fact after 2 weeks I felt better and more energetic than I ever have for years..the yellow tinge GONE!

Unbelievable...and I still feel great right now, like I use when I was in my 20's before I contract this virus in a blood transfusion. I did not realize how poorly, very slowly over time, I had become. I still have not had one bout of indigestion..no more Gaviscon..oh, never take this with Harvoni...

Still overweight BMI 27.5 but my liver readings fell after first month and are even better after this last blood tests..all in middle of normal range, which is fantastic.

I did not clear the HCvirus until my final 12 week blood test... and after last week's blood tests, I was declared HCV free (after 39 years) almost to the day when I received the blood transfusion . I can hardly believe it...my family, friends...everyone I know is so happy for me.

The Harvoni cured me of my HCV in 12 weeks...Hooray! No side effects...I was lucky...

Gilead need to drop the price of this drug so the NHS can offer it to all its HCV patients It was designed for.

There are even newer drug that have been approved that cure all genotypes...do not know details.

If you are an HCV patient reading this, do all your research before you agree on a particular drug for yourself...only you know the whole story regarding your symptoms, conditions and psyche..and whether you can stick to a certain regime.

The single most important thing you can do is address your lifestyle choices to optimise you liver health doing battle with this tenacious, awful virus. Make sure you are up to date with flu jabs and have a PPV(pneumonia jab, remember a compromised liver is a compromised immunity) HBV and HAV jabs if potential exposure risk.

Do not drink.

As my liver heals itself I will have an ultrasound and Fibroscan test in October to see how it is coping post treatment. So I will maintain my healthy lifestyle remain optimistic and live my life more fully as I no longer feel exhausted/fatigued everyday.

I look at Anita Roddick, Bodyshop owner, who found out too late, that she had HCV...she had end stage liver disease, hardly any symptoms until then.....she passed away prematurely from her liver disease, sadly.

The biggest error the NHS makes is implying you should get tested for HCV especially if you have been a drug user shared needles, have had tattoos or heavy drinker...It no longer makes any difference what was your point of contamination was, where or how you caught it....because the virus has been out there in the general population for so long...people who have HCV in the past pre 1992) may have passed it on to others through poor hygiene practices at home or publically through places like dentist, spas(manicurist, hairdresser clippers), medical professions,as well as needle sharing...the emphasis should be on age groups(baby boomers) and symptoms. Get tested if you have any doubts...it is likely most people do not have it, but at least you will not unwittingly pass it on if you do. HCV is not highly contagious unless your blood comes into contact with someone who has HCV.

And there is a cure for many genotypes now with new drugs on horizon.. Now for a vaccination, right!?

Good luck to all of you being treated...and, do not give up if you are waiting.

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  • Glad you had the treatment. Many of us on here have been blessed to get it. I had my 12 weeks course last year just a couple of months or less prior to transplant. Although it could not get all the liver disease the Hep C had done, it did allow me to have a clean slate for the new liver going in.

    Genome type 1 is very lucky. I believe they are still trying to sort the meds for type 3 as alas,the Harvoni does not seem to work on its own with that blood group.

    I had zero side effects. It tends to be the RIBA that causes those, like nausea. I told my doctor that and they took me off that part of the trial straight away. When I got mine I was in the first group, so they had a protocol you had to meet and that you take the ribaflavin ? Sorry, I always forget that medications name, lol. It was a point system. The sicker you were, the higher your points were. I was supposed to be in the first 500 but had a flub and went in with the second 500. Now it's open to all who qualify! Yay!

    It took hep C and drinking to ruin my liver..Hep C can stay in your system for years without any issues, slowly ruining the liver. That was my situation.

    I'm ever grateful I got the Harvoni! It's a wonderful thing.

    And it's soooo much better than the interferon treatment that reallllly made folks Ill.

    Thanks for sharing your story!

    And your right about Gilead, but Big Pharma is in it for the money. They know it's an epidemic and they have the standard ten years on this before someone else can make it. No, they will charge an arm and a leg for as long as they can. It's sad. You would think these medical pharmacy companies care about humans. So many people die from even small things because they could not afford a simple medication. It's criminal..but that's just my opinion!

    Cheering you on!

    xxxxx

  • Glad you got the result is wasn't so lucky had the harvoni for 12 weeks but did not clear I'm geno 3a I just got told it's very hard to clear that was 6 months ago now but every thing now is going from bad to worse totally fed up with it all now been going on to long ricky

  • The website mentioned for understanding blood results is at

    liverdoctor.com/liver/liver...

  • Great news! So glad you were successful in clearing the virus.It must be an amazing feeling to be free of the virus after so long. Very good too that you fought your corner and got Harvoni. I couldn't persuade my liver nurse to apply for Harvoni for me and think it will be out of reach until who knows when, so I'm going ahead with Abbvie Pak and the dreaded Ribavirin, as I've been treated before, although 20 years ago. I've just been waiting to get healthy from a different health problem before I start the regime. So hopefully that will be my Christmas present...to be free too.

  • Hi beefeater, Yeah, I was lucky to be put on Harvoni. However, once you clear up your other health problem, the Abbvie Pak should work and clear your HCV...as for the ribivarin...you will be very closely monitored so if it doesn't agree with you, the Abbvie should work alone. It'll probably seem like a walk in the park if you did the interferon/ribavirin 20 years ago."esp if you did the entire 48 weeks and not clearing it. Whereas the Abbvie with Ribavirin has an almost 99-100% cure rate if you complete it and have genotype 1...good luck, let us know when you start your treatment.

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