Are there any new studies out or statistics for Harvoni posttx 2018?

[robertk1997]

Hi, I'm a 21 year old male who had gotten Hepatitis C for a very short period back in 2016 and we treated immediately with Harvoni (taken for 2 months I think?). It has been a very long time and I've nearly forgotten about the fact that I've had it. I only remember at random times when I think hard to myself about why it is I can't focus super well, or why my mind is sometimes foggy... I remember that I was on Harvoni and had hepatitis C at a point.

I become really depressed when I remember this because I try to push it out of my mind, and NEVER do I want to think of the possibility of the virus coming back. Truly a nightmare... especially being clean and finding some meaning in life - my past constantly haunts me in some way.

So the big question, are there any new studies or input from members in regards to Hep C post-tx (Harvoni specifically or just similar treatment) as to whether there are long term consequences, re-occurrence of the virus, or anything new that has emerged? I know I don't trust the FDA or pharmaceuticals at all anymore considering the modern model is based around the Rockefellers model from the early 1900's. Can anyone please give me any input - the good, great, bad, and ugly. Thank you,
Robert.

[andrew j]

Hi Robert,

My recovery has been reasonably normal, I think.
I am older than you are (61), and I had Hep C for about 40 years.
I am 2 years-or-so post-Tx.

Most people seem to recover normally - though I have to say - it seems that people who experience side-effects post-Tx have generally not experienced any symptoms prior to Tx - and vice versa.

I was really unwell when I had Hep C.
Getting treated has therefore been like some sort of miracle for me.
If there is a downside (there isn't, really) it's that I still seem to feel tired a lot - and easily run out of gas.
Otherwise - it's all good, as they say!

Some have reported mild adverse reactions to Tx, which require actively engaging in one's health post-Tx (including diet and exercise etc., and sometimes follow-up healthcare), and a few have, unfortunately, wound up with more serious side-effects, including general debilitation, severe joint and muscle pain, and skin conditions.

Once again, though, most people seem to be doing fine - which is a good thing considering the huge transformation that takes place treating something as insidious as Hep C.

Have a trawl around here, and look esp. at some of the stories on the homepage, and in the blogs section.

Hoping that you are doing OK today,

A.

[Lynn K]

I had hep c for 37 years was diagnosed with cirrhosis after being infected for 30 years.

I treated three times in the past with interferon based treatments for six months each time but had no response to treatment. I treated with Solvadi and Olysio when they were first approved for 12 weeks but relapsed.

My fifth and last treatment was 24 weeks of Harvoni along with ribavirin because of my prior treatment history and cirrhosis.

I finished that treatment in May 2015 and remain cured. I feel great at 60 years old and living with liver cirrhosis for over 10 years now. I thank modern medicine every day for saving my life.

Best of luck to you and congrats on your cure.

[Mila]

You should check out this section of the forums:
Hepatitis C Research News & Studies

It's in the left side navigation.

I unknowingly had HepC for probably 40 or so years until I was properly diagnosed in 2015. I never had any symptoms and my AST level was literally 2 points above the high end of normal and they stayed there for decades while everything else was normal. When I found out I had it for sure and might never get sick from it, but was fully able to pass it on to others I decided to get treatment because I had a chance of developing symptoms and who wants to have that in their body? Or infect others...even worse!

I had a lot of side effects while on Harvoni and some that lasted for a time after but it was immediate that I noticed both the HepC and the Harvoni no longer in my body. So even the things I thought were normal were the result of HepC. Some were symptoms.

Bottom line is I finished my tx 2 years ago and I am not sorry about doing it. I am many years older than you are and already had reactions to other kinds of medications for other things, unrelated to HepC or Harvoni, so side effects from drugs was not lost on me. Ultimately, I ended up with Celiacs disease 4 days into tx and that did not go away. Frankly...if that is the worst it has to offer than I am grateful for it too. I'd rather not have a disease that would have made me so very ill and ravage my organs.

I don't eat gluten now and I am fine. Don't worry about this. Spend your new health and life living and not worrying about after effects of Harvoni. You are HepC free and that is huge. Its everything. This is your 2nd chance a gift that was unheard of 15 years ago.

Be well,
~Mila

[mario555]

I had hep c for 43 years (my guess) and was borderline starting cirrhosis. I had failed 2 previous interferon treatments and had nothing to lose. I received 24 weeks of Harvoni and I felt I was overdosing towards the last 4-5 weeks! I finished my treatment almost 4 years ago. During the treatment I suffered from tinnitus and dizziness and I still have a fair amount of the two side effects. Tinnitus if I am tired or stressed and dizziness if I tilt my head to the left!
On the positive side I feel 10 years younger, I can digest anything I want and most wonderful, I can fall asleep in 5 minutes compared to 3 hours before!
I am very thankful to science and gilead and I would do the treatment all over again without hesitation (but for 20 weeks only......)

[slats1056]

 Hi Robert,
   Check out this link . A lot of info. provided , so it will take some reading and patience! Found it last week and I am still breaking it down to My situation. You need to check out the references to Harvoni as well as by the drug names. ( Ledipasvir and Sofosbuvir ) A lot to take in , so take Your time and don't get discouraged.

  It will help out if You supply so of Your background info. as well.  I.E. Your genotype , viral load , liver enzymes , and such. Also , do You have any time frames from when You finished treatment and Your follow up tests for SVR12 or SVR24? I had some issues while on Harvoni Tx. as well as post Tx. most of which have gotten better slowly. With the exception of tinnitus and lingering joint pain to this day.

  I am currently on re-treatment with Mavyret for sixteen weeks ( just started week four Monday ) which is a breeze if I do say so Myself. Just turned 64 on the day You posted this , and have had HCV since 1973 . So that makes Me an old fart compared to You I guess
  Anyway here is the link! http://www.natap.org/hcv.htm


                                                 Slats

 I AM JUST GOING TO PUT AN " OUT OF ORDER " STICKER ON MY FOREHEAD AND CALL IT A DAY!

[Reno]

Robert,

I was diagnosed with Hep C in 1999 and received treatment via Harvoni in 2015 which proved successful. I recently had another blood test (late 2018) just to verify that I am Hep C free which confirmed I still was free from the virus.

I would concur in totality with Andrew J's post. I also am 61 and easily run out of gas at times, but I think it is as much an age factor as anything else. Honestly from the circle of people that I know personally that were positive for Hep C and recovered via TX, none have relapsed. I have found that diet, exercise and attention to your lifestyle play a major part in providing a positive recovery from Hep C. I wish you all the best.
Reno

[Brum]

G'day all from Oz,
Since being cured in sept '15 the changes in my health have been, slowly but surely, amazing. Sleep, appetite, energy, brain sharpness, motivation, calmness, skin condition, temper, mental health are all very much improved. The only major lack of improvement is in my sex life, probably due to being an old bastard.( any advice gratefully accepted.)
Before treatment I was f4 cirrhosis and sick as a neglected chook. My fibroscan readings have declined from 20.9 Kpa in March 15 to 10.8 Kpa Jan 18, and finally 6.0 Kpa last month. Liver rejuvenation from cirrhosis is a fact for most hep c sufferers!
To the young bloke who started the thread best of luck and be thankful you will not suffer decades of ill health.

[Mugwump]

Great to hear that I am not alone in having my liver fibrosis reduce from levels that indicate advancing cirrhosis.

Welcome to the forum Brum. As far as the downside you mentioned, well I too just consider myself to be an old fart that once had it all but forgot where hell they put it!

It does seem that some of us were very lucky indeed, by being treated just in the nic of time before cirrhosis did extreme damage. From those who I have know who had HCV long term and did not survive, it was a sudden downward slide in health. One had a liver transplant after a bout of severe flu brought on an sudden increase in the damage being done to his liver. He survived 14 years with his new liver until the HCV took it out, he died before solvaldi was offered to HCV patients.
Two others that I knew died from HCC before effective treatment was available one had failed with interferon treatment. And I have known others that have died either directly from HCV or their deaths were influenced by having the disease.

From my own personal experience it is abundantly clear that leaving HCV untreated now that there are viable cures available is not a sensible way to deal with this horrible disease.

For me simply knowing that for the rest of my life there is no possibility of passing on this disease by accident is well worth the minimal risks that my DAA treatment posed.

[Lynn K]

Hi Brum welcome and congrats on your fibrosis scores!

I was diagnosed with cirrhosis January 2008 with a liver biopsy. For me my pretreatment Fibroscan Sept 2014 was 27 and my one year post treatment April 2016 had risen to 33. I hadn’t been told of needing to fast and did both in the afternoon so I probably had eaten for both tests. I’m seeing my liver doctor in February and asked to have a new 4 year post treatment Fibroscan. I am hoping I will have had some positive changes to report but we’ll see I guess.

So far no change in my platelet count since I was cured it is still around 110 but it is up from before I was cured when they were running around 85.

[Brum]

Hello Lynn and Mugwump,
I know of fellow Aussies with similar excellent fibroscan readings to mine and others with static results. Not so long ago Hepatologists thought cirrhosis was irreversible but they now seem believe in the point of no return. I read a Swedish paper covering 10 years or better and people showing little or no improvement were a small minority.
I would like to praise the Australian health system. Within 6 months of being diagnosed I received compassionate access to Abbvie Viekira pak and 6 months after I finished the new drugs were available to all. What we fear most of all is being subjected to a health system like the US endures.A little socialism in the right areas goes a long way to making a cohesive country.   Brum.

[Lynn K]

In my case if you look at my signature I was treated multiple times over the years since I was originally diagnosed with hep c in 1990. Unfortunately, I was a null responder to my interferon based treatments I had received. My problem wasn’t from lack of treatment it was due to there being no effective treatments available anywhere. I had 4 liver biopsies every five years and saw higher fibrosis scores with each subsequent biopsy. When I was diagnosed with cirrhosis in 2008 I was left with no options and a grim prognosis for 6 years until miraculously the new DAA meds were finally being approved. Up until 2014 I was beginning to doubt I would make my 60th birthday. I’ll be turning 61 this March.

[Brum]

Lynn. It is the insidious nature of hep c that annoys me most of all. The only illnesses I've suffered are Ross river fever ( from mozzies) and glandular fever in my early thirties. I had many blood tests then but there was no indication of the sneaky hep c virus (then called non-a non-b hepatitis). I have no idea whatsoever how I was infected.I never used needles or had tattoos or blood transfusions. So it's a case of you don't know what you've got till it's gone. Now it's gone and my health has improved I realise how debilitated I was , especially in the last two decades.
PS: 49.5C in Port Agusta, South Australia yesterday. The scientists are right, the media and the politicians are just babbling.     Brum.

[Lynn K]

Yeah Hep c has always been called the silent illness. But really many illnesses have few indications until serious damage has been done and it is often too late day for example Pancreatic cancer and many other cancers as well like glioblastoma that killed my sister-in-law. So I’d rather have had hep c than one of the others silent killers.

There was no antibody testing available until I believe 1990 when I was diagnosed after donating blood so other than possibly elevated liver enzymes there was no way to know anything was going on.

I have my military discharge blood tests that were done in July 1988 and my liver enzymes were normal although I assume I contracted hep c in 1977 or 1978 ten years prior.

I’ve never really had any illnesses beyond the mumps and measles when I was a child before they had a vaccine for those viruses. I never really felt unwell when I had hep c or even cirrhosis beyond being kind of tired. I don’t  feel much different being cured just the burden of knowing I carry a potentially transmittable chronic illness which was slowly damaging my liver for decades is now gone.

We  can’t do anything about the past we can only move forwards from where we are today.

Best of luck

[I fightis thetitis]

Hi Everyone,

Treated in 2015 and only side fx that seems to be getting worse for me is tinnitus.
Several others have the same reaction. I have researched this rather well.

In most cases, tinnitus is a sensorineural reaction in the brain to damage in the ear and auditory system. Some medications can damage the nerves in the ear. Although bothersome, tinnitus usually isn't a sign of something serious.

Since there have been others who experience joint pain as a side, seems reasonable to suspect Harvoni may affect nerve function in SOME people.
I'll take the trade off any day!!

Best to everyone,
Greg

[Lynn K]

I have tinnitus but I had it years before treating with the new DAA’s I suspect working as a machinist and mechanic motorcycle riding and other noisy stuff I’ve done for most of my life.

[WholeFoods]

I’m two months away from my 4 year anniversary of clearing the virus with Harvoni and just celebrated my 60th birthday. Last week I was diagnosed with cataracts in both eyes. I feel like once the virus left my body, things started deteriorating. My stamina has returned somewhat, but endurance is still a problem. I’m not talking about running marathons, just average day to day... can’t endure anything “extra”  for weeks on end without getting wiped out. I’m still living the healthy lifestyle.

[andrew j]

I remember you, WholeFoods - and I remember that you were left with some unpleasant residual side-effects.
What a b*****d!!

I have similar probs with endurance / energy management now.
I had some other serious health stuff going on just prior to getting treated, and I'm also a little older now (61) - so I guess, in my case - it could be any of those things - or a combination of them.

So sorry that you've been left wit this b******t to deal with ... and hoping that it gets better for you, soon.

A.

[WholeFoods]

Thanks Andrew. Yes, the Celiac disease I acquired has had the biggest impact on my life as it is extremely difficult to eat outside the home. I’m doing my best to take it in stride recalling a conversation I had with my mother years ago when she told me she noticed quite a big dip in well being at age 60. I think I shall never quite get over having the dragon hanging over my head in some way... don’t have it anymore, but after 35 years of running free, nodoby knows what the long term residual will be.

Hope it gets better for you too Andrew!