Harvoni

[Pmw88]

Hi I was just wondering if anyone else is currently taking Harvoni or has completed treatment? If so have you had. Fibroscan post treatment and has it improved?? Many thanks

[ihateparkinsons]

I was on Harvoni for six months. It cured my chronic Hep C. After that I had blood work and ultra sound. I was then diagnosed with stable Cirhosis. That was a year and a half ago. Every six moths I have the blood work and ultr sound. The nurse calls and says, "your good, see you in six months", somehow that doesn't make me feel to confident. I also have Parkinson's Desease to deal with. I feel my doctor is leaving me hanging on the edge of my seat with the "your good" comment. I am still living, so everything is ok for now.

[Cathy-anne in reply to ihateparkinsons]

Hi the Drs don't give you too much information unless you ask.congrats on being negative. Cathy

[kurtymac]

Can't offer much help here, but my mom had treatment with Harvoni. 2 years post treatment, liver looks good on scans and labs. Hep c has stayed gone.

[angelo212]

I took Twinvir which is the same thing (gerneric Harvoni). Took for 84 days and still undetected after 4 1/2 months. Liver numbers were normal. My virus load was very high and my liver numbers were in the 300-400 for years. Had a biopsy done in 2012 and liver damage was minimal. I go for my 6 month blood work in a few weeks. If still undetected I'm considered cured.

[mherbie]

I completed an 8 week course in early June. My liver function. Tests returned to normal and my viral load from 296000 to 27 at last blood test, waiting for another result Like angelo212 said. If undetected 3 months post treatment considered cured!

[Pmw88 in reply to mherbie]

Sorry for asking but what was your Fibroscan score before treatment if you had one ? If so do you know what it is now and is there any improvement??

[mherbie in reply to Pmw88]

I haven't my notes with me, but I think 6 (just a little damage) but I believe scores vary depending on the machines... I am not being sent for another one post treatment.

Continue to care for liver health, not taking it for granted!

[hall2001ok]

I was successful with harvonie. Hep c clear since last October, the consultant seems to think that as people get older, it's possible fibrosis may repair itself, but not enough statistical evidence so far. I am 66.but no fibroscan so far. Also since then an ablation to zap a tumour. I am one lucky man. Good luck to you.

[art4949]

Yes, I was treated with Harvoni only (turned down Ribivarin) which I took every evening with 8 ounces of water. I felt it worked better for me at night. My Fibroscan prior to my treatment (within 6 months of treatment) was 11.5-12 which is considered cirrhotic.

Also,My AST/ALT and HCC markers were above average..not normal and had slowly got worse in last 3-5 years as were my symptoms of brain fog, indigestion and bad fatigue...none which I had 5+years prior to my treatment.

By the time I received my treatment in February 2016... I had been living with my HCV since July 19, 1977 (contaminated blood given during childbirth) I do not smoke or drink and always have eaten healthily on the whole.

When I took my last Harvoni on April 23 my last blood test had shown the HCV was no longer detectable. I drank loads of water and felt increasingly better within 10 days of beginning treatment...though the virus was still detectable. Interestingly, I had no side effects at all.

Six Months after taking my last Harvoni HCV was no longer detectable, therefore, I was considered (by me) CURED! Almost 40 years to the day. A medical miracle, eh?

Because the decline of health rendered by this stealth virus is subtle..I had no idea how poorly I was until I was cured at the age of 66 years old. I felt a surge of energy and mental clarity that began to emerge since treatment that surprised me and my family & friends.

One of the best bits was when I went to see my liver specialist who was reluctant to give me a Fibroscan so soon after my treatment (1 year) as he declared it takes a while for liver to recover. However, they did preform a Fibroscan..,same machine as before and my reading had dropped down to 8.9. is that not amazing! And my LFT GGT and ALP continue to remain low ..

Also, I guess because I have normal energy (& moved house?) and as a result much more active on daily basis...I have lost all the weight I had gained in the 5 years leading up to my treatment. Interesting...about 25 pounds

I still have an under active thyroid that is maintained with thyroixine..a dose which has remained the same for 20 years and manage my lichen sclerosis through simple skin care routine and annual check ups.. needless to say, for me, Harvoni has saved my life, improved my health and the quality of my life for me and all who know me.

Everyone's response will be different taking Harvoni because genetically, physically and psychologically we are each unique...and HCV affects each of us in different ways...so, the starting point will never be the same. But, generally speaking, even with side effects...none which are life threatening (w/o ribivarin) Harvoni should improve your health.

I was genotype 1b but it works well on 1a too.

Good luck!

[Pmw88 in reply to art4949]

Thank you for sharing that . My Fibroscan pre treatment was 12.5 but not considered cirrhotic pre treatment but I was shocked as apart from the last couple of months I had no symptoms . It was only when I went to the doctor feeling generally unwell that my LfT showed abnormality. Having seen a specialist he discovered my HCV infection and recommended 8 weeks of Harvoni . Unfortunately neither the NHS or my healthcare company would fund it so I paid for it personally! I just hope that it gets rid of the virus and my liver can improve. I don't been know how I get the virus in the first place which makes it even worse . Although not a heavy drinker I have always enjoyed a glass of wine and really hope I can again at some point. I feel fine now 4 weeks into treatment apart from aching joints which I understand is a common side effect . I am planning to ask for another Fibroscan after treatment as I really hope there is an improvement.

[art4949 in reply to Pmw88]

It's often difficult to determine when and where you initially have contracted HCV. All you need is a healthcare professional or someone (from surgeon, dentist, tattooist, manicurist, hair dresser, fellow drug users) with poor hygiene practices when handling an Item where the blood from one person infected with HCV has the potential to infect another person through blood to blood contact. I was under anthestic when my doctor gave me 2 pints of infected blood while having C-section. .

Nobody knew of the risks back in the 70 & 80's...of AIDS or HCV..through contaminated blood. In 1987 it was only just being recognised as non -A non-B, by 1992 it was called Hepatitis C and there was a way to test blood for this new virus,

Hopefully, you will clear the virus after 8 weeks. Make sure you drink loads of water...62 ounces I drank each day..and I do not like drinking water...but I researched side effects, and all the water drinkers seemed to have mild to nil side effects. Just measure the amount into a big water jug and make sure it's empty by end of each day. Eight weeks will go fast.

Personally, I would not touch any alcohol at all ever until you gave been virus free for a year as 12.5 is on the cirrhotic scale. Technically, you should have received treatment for HCV...but they are mean with the Harvoni because they say Gilead won't lower the price.

However, you are paying for your own treatment...when you reach our age, quality of life is about moving on not being put on hold for months or years waiting for NHS to treat you. i got lucky, really!

You should find the viral load will drop dramatically with each blood test and eventually become undetectable by time you finish your treatment.

It took me 8 weeks to become undetectable. I think 8 weeks would have cleared it for me but it can return (unlikely) just after finishing treatment. My specialist insisted on 12 weeks. It never returned,

Make sure before you have that glass of wine that not only is your Fibroscan (give it 1 year from last one) normal range but your LFT and all HCC markers are in normal range...and your scans show no damage to blood supply in and out of liver(&size of liver is normal) or gall bladder.

Also, your doctor should have told you what drugs to avoid or not take with Harvoni. If not google it....and Gilead have details of this as well. For example, antacids can block drug action.

Let me know how it goes...aches could be HCV, too. Good Luck!

[Pmw88 in reply to art4949]

Thank you for your support much appreciated. I think my consultant prescribed me with 8 weeks treatment because I have a low viral load. I really can't wait for this all to be over as it is taking over my life and I'm finding it really hard to concentrate on anything else like running my business... nightmare . Anyway having read quite a few posts I can see that there are people in much worse situations than me and it does seem that the support network for HCV infected people amongst the medical profession is sadly lacking hence why these forums are so popular . Also as these anti viral drugs are so new nobody really knows the whole story and that makes me nervous about the long term effects . I have my first blood test this week which I'm looking forward to as I hope they will be positive!!

[kurtymac]

Harvoni works by stopping the replication process of Hep C. Hep C needs to replicate millions of copies a day to stay in your system. When that replication process is impeded on, that is when Hep C takes a hike. Regardless of tests, it is brilliant because just a few years before Harvoni came out they said it was impossible to get ride of a virus if already infected. As you see above, Hep C is the number one cause for HCC. Getting rid of it as quick as possible is good.

[Pmw88 in reply to kurtymac]

Hi sorry what does HCCC stand for ?

[kurtymac in reply to Pmw88]

Sorry, I meant HCC = Hepatocellular Carcinoma. The blood test for it is alpha fetoprotein (AFP) to test for markers of HCC. Normally, fetuses, infants and pregnant women have increased AFP. However, when you don't have that and AFP is elevated it could mean HCC. It normally takes a very long time for it to develop from when you initially contract Hep C. That is why it is good to be proactive and stop it in its tracks.

[art4949]

ncbi.nlm.nih.gov/pmc/articl...

[Pmw88 in reply to art4949]

Thank you I just wanted to say now finished medication not detected but have 10 weeks to be sure of SVR . Had a Fibroscan and down to 9.5 from 12.5 in less than 4 months delighted!

[art4949]

This is amazing recovery after your treatment!!...it makes you realise how much damage HCV does to your liver if left untreated..especially as you get older and have had the disease for a while.

. I never drank or took any drugs legal or not...yet in the 5 years leading up to my treatment, my liver was rapidly loosing battle with HCV compared to beforehand(1977-2012) ..becoming Cirrhotic with increasing symptoms of bad indigestion, migraines, brain fog and fatigue(where doing anything was too much effort...slept a lot). I also did some 'comfort eating' to compensate. That has all returned to normal.

Hopefully, you will return to full health which always reflect a person's age, gender and genetic make up..oh, and lifestyle choices!

Happy to hear you are doing so well!