Before you start Harvoni.

[Mike Conwell]

Before you start treatment!!!! My advice is to wait and not take Harvoni. New drugs are coming. For me Harvoni should be labeled BAD DRUG. I'm worse now than before I took Harvoni

[Mike Conwell]

Read ALL the post treatment people's posts

[Lynn K]

Hi Mike

Sorry you are having difficulty post treatment I hope it gets better for you.

However many folks cannot wait for treatment as they like myself already have advanced liver disease and cirrhosis. Also the majority of people had little to no side effects. I would hate to see someone who desperately needs to cure their hep c hold off on a very valuable treatment which could save their life without side effects.

I had hep c for 37 years and cirrhosis for 8 years I treated 3 times with interferon based treatment to no avail. I treated with Harvoni for 24 weeks and ribavirin for 15 of those 24 weeks. My only side was anemia from the ribavirin which resolved quickly once I finished treatment. I am now almost 16 months cured of hep c and feel fine.

Again I am sorry you are having health concerns but I don't think you should be trying to advise people to not treat with Harvoni. I think we all need to make our own choices based on our own individual circumstances.

Best wishes
Lynn

[dragonslayer]

I agree with you Lynn...  I dont think there is a drug that exists which is completely free of all side effects for all people.

Everything in life is a risk/reward proposition.   As you stated, the 'reward' for most people who have taken Harvoni far surpasses the risk from negative side effects.  People who are contemplating treatment need to realize this.. This in no way diminishes any individual cases of serious side effects, but the drug's efficacy lies in the  numbers of people treated with positive outcomes, free of major side effects.

[morab]

I would recommend all people considering treatment with Harvoni get tested for RA before treatment.
I just got lab results showing RA positive and my wrists, hips, low back and feet are in so much pain.
We really need to know if Harvoni caused it, or we headed that direction anyway.
The only way to find that out is get tested before and after.
Not happy about having RA!
Morab

[Grateful Gmom]

Morab, what is RA? I started Harvoni a few days ago and am having joint pain/leg aches as well. All the best to you!

[Mike Conwell]

It's rumatory arthritis

[Grateful Gmom]

Thanks Mike, I should have known that! In a slight fog today and it just didn't click.

[Mike Conwell]

Your welcome. I feel for you just starting. I'm a year and a half post treatment. I've had several problems since I got done. I know a lot of people have no problems but I wasn't one of the lucky ones. I too got RA after treatment

[D63]

Hi there! Just checking in. Okay, so I am in Spain now and I have access to socialized medicine. It took me 8 months to get an appointment with a GI. I was offered Harvoni, not my pick. I've been reading some post tx reactions as well as the FDA published adverse reactions. No warm fuzzies about taking this drug. However, because of my results, it will be Harvoni solo, 8 wks. I'm Geno 1a, Treatment naive diagnosed in 1990. FibroScan: 5.4, F0-F1, at 3 million VL. Thick bladder wall, possible cyst, chronic prostatitis (non-bacterial) and 12,00 cryoglobulinemia. I also have tendonosis, as opposed to tendonitis lasting for the last 8 months. My appt. to start will be Jan. 25th 2017. My concerns are that any of these pre-conditions may be exacerbated by the treatment. I'm printing some of the FDA documents of adverse reactions to give to the GI in case I get the "it's all in your head look," should such conditions arise and I go ahead with it. I must admit, I'm apprehensive and dubious. I'll check in. Wishing everyone a comfortable holiday season and LUCK!

53 year old male
Diagnosed 1990 received via tattoo<
TX: Naive
Geno: 1a
FibroScan: 5.4 November 28, 2016
F-Score: F0-F1
VL:3 Million
ALT: 63
Cryo: 12,00

[D63]

I plan on having this ready for my doc.

https://www.edocr.com/v/a07bc284/jackberlin/fda-adverse-event-reporting-system-harvoni

[Lynn K]

While sadly some people do report having a difficult time with treatment the majority of people experienced little to no side effects most common being an occasional mild headache. The primary recommendation is just to drink enough water to be properly hydrated seems to reduce headaches. Your situation is a little bit more complicated so be sure to work with your doctor.

I have advanced liver disease with cirrhosis and did not experience any sides from Harvoni while on my 24 weeks of treatment except a couple of mild headaches.

Best of luck on treatment don't borrow trouble from a tomorrow that may never come.

[Mike Conwell]

(Removed profanity and accusations. Moderators are volunteers. It was rude. - jack)

Harvoni is bad medicine

[Lynn K]

Actually no just worker at a job.

Must you insult and use profanity toward those who don't share your opinion?

I was dying of cirrhosis my treatment was easy and Harvoni saved my life.

[Mike Conwell]

Haha yeah right!!!! That shit is killing me 

(Moderator comment: Leaving this in as an example of how not to be courteous and hear all opinions. -jack)

[Lynn K]

As I have said before I hope you find help for your health problems. But what you unfortunately are experiencing is not what most people have experienced with treatment.

While certainly people should be aware of possibilities having a difficult time with Harvoni in general for most is not what is expected.

I hope they find a way to help you with your symptoms soon

[Sergey]

Before you start treatment!!!! My advice is to wait and not take Harvoni. New drugs are coming.

All HCV treatment looks as not well studied. And new drugs, probably will remain "not well studied" during many years. But waiting with cirrhosis may lead to decompensation, and Harvoni may save life. For me, it is a personal choice - to try a bit experimental treatment or not to try. With advanced cirrhosis it may looks like "nothing to lose", because prognosis of sub- or decompensated cirrhosis is not good without treatment. If ascites exists then long term prognosis without treatment usually is not good.

[Lynn K]

As for me I had already been in a clinical trial but was a null responder to interferon and ribavirin meaning my viral load did not decrease on treatment.

I had developed pitting edema and some ascities back in 2008 and grade 3 esophageal varices in 2012. So prior to the approval of the new DAA meds in 2014 basically I was waiting to see when I would completely decompensate and be put on the liver transplant list and hope I received a transplant before I died from liver cirrhosis.

So yeah Harvoni gave me my life back.

[Sergey]

Lynn, your cirrhosis was very advanced and grade 3 varices mean high risk of variceal bleeding. Such bleeding may be fatal in up to 50% of cases... I am glad to see that treatment works in your case and hope you will be fine after treatment.
Did you have cirrhosis at the time of HCV diagnosis (in 1990)?

[jberlin]

Mike,

Politely asking you to keep it civil. The moderators here are not employees of a drug company, but survivors of Hep C that volunteer to help. If you want to converse, please do; if you want to rant or take out your anger, do it someplace else.

What have we learned?
Harvoni can have adverse effects. (I posted that FDA fact sheet over a year ago)
Harvoni can be a cure.
Different people react to medications differently.

Seek medical guidance from a professional! And yes, ask hard questions.

Once again, respect this forum and participants.

Thanks,
jack

[Lynn K]

Hi Sergey

When I was originally diagnosed with hep c in late 1990 I had a liver biopsy a few years later and was F1. I also treated with interferon mono therapy three shots a week on interferon and nothing else back then. There was not even a viral load test at the time but I was positive for antibodies and had slightly elevated liver enzymes. I found out when I donated blood.

Yes well aware or the risks of having a fatal bleeding event from esophageal varicies. I underwent an upper endoscopy once a month for the next 4 months. To band the enlarged blood vessels and now have an upper endoscopy every year to monitor for their return but so far so good I have not had a reoccurrence. Next EGD scheduled for January 2017
I had a total of 4 liver biopsies over the years at about 5 year intervals each one higher than the last going to F2 to F3 to finally F4 in January 2008. So I was diagnosed with cirrhosis coming up on 9 years ago. At the time I was diagnosed I researched my prognosis with having early cirrhosis and read the my odds of needing a transplant or dying in 10 years were about 50%. I also learned about the symptoms of advanced cirrhosis and know that death from liver disease is a terrible way to die.

 But now because I am cured I hope I can back away from that cliff and live a normal life span and die from something other than hep c and cirrhosis.

[Sergey]

Hi, Lynn!

If you had F1 in 1990, it looks like fast progression... If not a secret - did you had some risk factors  (for example, alcohol consumption, overweight, HBV coinfection)? I had read that prognosis with early cirrhosis (MELD < 11 and albumin > 35 g/l) seems as 80% of survival in 10 years (for example, http://www.nature.com/ajg/journal/v104/n5/abs/ajg200931a.html ) Hope you will be fine.

[Lynn K]

Well first recall I had been infected likely in 1978 so when I learned I had hep c I had already been infected for 12 years. When I was dx with cirrhosis I had been infected for 30 years. I have read about 20% of people infected for 20 years will develop cirrhosis but that percentage does increase as time continues.

As far as I am aware the risk factors for developing cirrhosis are being male, being overweight and heavy alcohol consumption.

When I was diagnosed with HCV in 1990 my doctor said it was ok to drink occodionally and only in moderation. They at the time thought that to be good advise.

I was then a 32 year old female who weighed about 120 lbs at 5'3".

So yes i did drink from time to time sometimes more, sonetimes less. And a handful of times more to the point of being fairly inebriated. But that was not a daily or weekly or even monthly thing at any time and at other times I abstained for a couple of years during those 18 years from diagnosis with hep c until I was told I had cirrhosis.

So while I expect that did not help I was not a chronic heavy drinker but it is what it is. I have a coworker who was probably infected for long as me. He is very heavy, drinks a lot of beer every weekend. So male, overweight and heavy alcohol consumption. I finally persuaded him to get a biopsy. He was F1.

I did gain some weight over the years and currently 170 which makes my BMI 30 right on the line of overweight and obese.

So female, moderate alcohol, and weight gain over time to overweight/obese. So o expect somewhat accelerated by alcohol but I suspect a genetic component as well. Comparing me to my friend one would think he should statistically have cirrhosis and I might or might not.

My MELD has never been higher than 7 my albumin has always been normal. My ALT and AST have been generally around 60 or so. Bilirubin normal. Only abnormal tests over the years were ALT and AST until I developed cirrhosis and the myplatelets fell to the 80 to 90 range. If I had not donated blood or has physicals to know my ALT AST were elevated I would not have known anything was wrong until I developed edema from cirrhosis in 2008. I bet you if I had had a physical where my doctor noted the elevated enzymes they may have asked if I drink and to lay off the alcohol never considering I could have hep c

[Lynn K]

I checked your article

Of the 352 patients followed

"RESULTS: During a median follow-up of 14.4 years, 194 subjects received a single course of interferon monotherapy, 131 patients developed decompensation (ascites, bleeding, hepatic encephalopathy), 109 patients had hepatocellular carcinoma (HCC), 9 had liver transplant, and 158 died."

So over 14.4 years 158 of the 352 had died and also considering the 9 transplants, 167 of 352 looks like 47% over 14 years similar to the 50% at 10 years I had seen.

[Sergey]

Yes, but patients in this study had different MELD. Many patients had MELD 11-13 or even >13. 80% at 10 years is correct for people with MELD < 11. If MELD higher than 10, then prognosis is worse than 80% at 10 years. In average, regardless of MELD, prognosis may be worse than 80% at 10 years.

P.S. I will answer later, because have to do some trip and leave house with good internet connection.

[D63]

I should add that my GI told me there was no fibrosis, hence no cirrhosis, which I find hard to believe after 26 plus years. He wanted me to wait another two years until I reached F-2 to F-3, the treatment go-ahead for public health system. I reasoned that what we're waiting for are more extrahepatic complications, diabetes, kidney problems, possible autoimmune issues, the whole gamut. I'm already positive for cryo. Cryo, is a treatment go-ahead here. Based on that issue, he decided to treat. It's logical to do it before it gets worse and treatment may be easier. I know that "everyone is different," but this is also a bias in my opinion. Sometimes it's better not to know. But that's a double-edged sword either way you slice it. Pun intended. I'm weighing in- afford to wait, or jump in? OR, ask him to consider another drug if that's possible. Where's the Nike symbol icon on here. I'm scared.

[lporterrn]

The issue of those having lots of side effects, vs those who don't isn't going to be resolved here. I blogged about this recently in case you want more info about this: https://www.hepmag.com/blog/pondering-hepatitis-c-medications

What can be resolved is how we speak to each other. Abuse is not tolerated and is why some of the other threads or posts have been locked or removed. 

[Lynn K]

Hi D63

Initially it was more difficult to get approval without liver damage but many insurers in the US are coming around now and allowing people without liver damage get treatment thank goodness. Still some others have successfully appealed after multiple denials and received treatment.

Sounds like your GI was not willing to fight for you and go through the appeal process.

Not sure what you are afraid of I am way more afraid of hep c than treating and curing before hep c can cause more damage.

The majority of people have little in the way of side effects beyond mild headaches. Only an unfortunate few have had problems on treatment which right now we don't really know if treatment was the cause or if some other prevously unknown medical condition might be the cause. Who knows at this point why these unfortunate folks are having continuing problems but that is not the experience of most people.

Of course the choice is between you and your medical provider. Wishing you good luck and good health.

[Luna7]

I'm weighing in- afford to wait, or jump in? OR, ask him to consider another drug if that's possible. Where's the Nike symbol icon on here. I'm scared.

Hi D63,

I think it's always better to take a drug that causes the least amount of side effects if possible. Do you know if Epclusa is available yet in Spain? It's a bit too soon to evaluate with certainty, but it appears people don't have the severe effects with Epclusa (compared to Harvoni).
Maybe if you pointed your doctor to the flood of adverse effects reported on the FDA website he would more likely to go with Epclusa?

I'm trying to think what I would do in your shoes. I think if I had to wait years then I would go with Harvoni, but if I could get Epclusa say within a year I would do that.
Sometimes when in a kind of double-bind as you are in it helps to set some kind of rule or definite plan of action once you know your options.

Best of luck to you!
Luna

[Mike Conwell]

Wow someone finally admitting HARVONI has serious side affects

[morab]

Epclusa is hot off the market, just like Harvoni was.
They both have sofosbuvir in them which may very well be what is causing side effects or the combination of it with another DAA.
If I were to have to choose again, I would wait if I could, for as long as I could before treating at all to see what the side effects truly are.
There has not been enough data on side effects on these drugs for anyone to admit there are severe side effects for some of us.
Still suffering head aches and body pain. All my tests have come out normal, MRI of my brain and heart also checking out ok.
There seems to be an invisible reason for my nervous system to be so out of wack, either the drugs, or the act of ridding my body of Hep C, who knows what is causing so many of us to have severe side effects.
But there is something going on for some of us to be still feeling so very bad.
Morab

[gnatcatcher]

Luna, Epclusa only received FDA approval on June 28, 2016. That's less than six months ago, and it's more than twenty-and-a-half months after the FDA approved Harvoni (October 10, 2014). Clinical studies of any drug cannot possibly unearth all the significant side effects that some people will have, so we don't yet know whether Epclusa may have as many serious side effects as Harvoni or Ribavirin or Interferon.

I was antsy about starting Harvoni only 9 months after its FDA approval, but I was lucky. I'd be even more antsy about starting Epclusa only 6 months after its FDA approval, but that's how I am with any pharmaceutical, having experienced a very serious side effect from a much-prescribed (and, in a lower dose, OTC) drug many years after the FDA approved that drug. (I'm going to call it  <nameless> because it has nothing to do with Hep C.)

If only there were a crystal ball that could have warned Mike Conwell and morab and others that Harvoni would be a dangerous drug for them to take and could have warned me that <nameless> was going to be a dangerous drug for me to take. Genetics-related science may one day get there, but meanwhile we humans are left playing the odds.

Gnatty

[Luna7]

Luna, Epclusa only received FDA approval on June 28, 2016. That's less than six months ago, and it's more than twenty-and-a-half months after the FDA approved Harvoni (October 10, 2014). Clinical studies of any drug cannot possibly unearth all the significant side effects that some people will have, so we don't yet know whether Epclusa may have as many serious side effects as Harvoni or Ribavirin or Interferon.

If only there were a crystal ball that could have warned Mike Conwell and morab and others that Harvoni would be a dangerous drug for them to take and could have warned me that <nameless> was going to be a dangerous drug for me to take. Genetics-related science may one day get there, but meanwhile we humans are left playing the odds.

Gnatty

Gnatty, I would agree with your assessment of Epclusa if it were in fact a new drug, but it is not a totally new drug as it is based on the earlier ones.
I can only hope, pray, or SOMEthing that all the negative effects reported to the FDA website related to Harvoni has caused them to tweak new forumlations that don't create such mitochondrial damage.
But...you never know...especially with this insane medical model of collateral damage being acceptable (basically, it's okay if a few people die or are permanently disabled as long as the majority of people are healed). I will NEVER accept this, and it goes totally against my Buddhist beliefs of never leaving anyone behind!

As long as we don't complain and rebel against the collateral damage philosophy and insist that drugs be as safe as possible for all they will continue to get away with this!
Part of the problem is that in order to have controlled studies they only do the tests on healthy people and those having health issues are not included in testing. It's faster, and cheaper, not to test on those with various health problems - and acceptable for there to be collateral damage.
It's why I get so godd*amn mad on this forum that goes along with these money-grubbing idiots while waiting for definitive proof as people die or are disabled for life!
Bleh...don't get me started....I have to get to work and earn some money today..

Luna

[dragonslayer]

Wow someone finally admitting HARVONI has serious side affects

But only for a minority of patients.  Of course, if youre in that minority, that knowledge doesnt help much.  However its crucial for prospective patients to realize that for most people, if Harvoni is whats been prescribed, youll take it and experience practically no sides.. Like me.. Like Lynn.. Like most who take it.

As the saying goes, if youre a mouse, everything looks huge to you; if youre an Elephant, well, you know how it goes.

I could be wrong, but it might be too early to make the determination that Epclusa has fewer sides in real world usage than Harvoni.. At the beginning of Harvoni, not much about adverse events was being reported either.   Ive read reports on this forum from patients taking Epclusa with sides also.

[Lynn K]

Wow someone finally admitting HARVONI has serious side affects

Well someone saying they had some troubling difficult symptoms. However, cause and effect has not yet been established. Not saying it can't be treatment related but we don't know yet with that treatment was the cause.

[Mike Conwell]

There are a lot of people having trouble with post Harvoni. I have several on my FB

[Lynn K]

Hi Mike

Not saying some people are not having problems just that it could be from other causes unrelated to treatment at least for some of them. Have some of their doctors said what they are experiencing could have been caused by Harvoni possibly activating a latent medical condition? Is there any evidence yet to confirm it was from Harvoni? Is there a common spectrum of problems or are the symptoms experienced random between people?

Have you and the others contacted the FDA so they can investigate and get this informatuon out there? That is how the box warning about those taking certain heart medicines was added to the prescribing information sheet by reports of adverse side effects to the FDA. You would be doing a service to all who follow use in future treatment.

I hope you and all those having problems can find a way to feel better soon.

Wishing you a great holiday season
Lynn

[morab]

Lynn
You are obviously biased, and quiet frankly,,,,,,,,,,Rude
Morab

[Lynn K]

Hi

I was not trying to be rude or insulting in any way and  if you felt that I humbly apologize if you felt that way.

But truly, please all of you having problems if you are willing to do so please contact the FDA per the information on the prescribing information sheet so they can work on getting to the bottom of what may be going on. In that way others can know more about these meds. The FDA can't study and hopfully find a solution for your issues or at least get a new warning out if they don't know about what you folks have experienced. They can't try to fix what they don't know is a problem.

Here is the contact information

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

And again my apologies if I offended you or anyone else

Best wishes to all this holiday season

[morab]

I have Lyn to all,,,no one wants to hear what I have to say
I think I am in the wrong group
morab

[Lynn K]

So then you did contact the FDA and they said what to you if I can ask?

I guess I just believe in the system and am assuming they take your concerns and gather the data to see if others report similar experiences. At least that is my hope. Then they I hope would follow up at least with some of the folks reporting to see how they are doing and maybe have their doctors run some tests to see if there is something they can find as a cause. But perhaps my faith is misplaced. I haven't needed to contact them so obviously I have no idea what really happens when you contact them.

You are more than welcome here we need all voices to share their experiences I just hope new people coming are not too frightened to treat because of what they read here and hope they realize that they are not necessarily going to have a difficult time everyone's experiences with treatment are different. 

[morab]

The FDA does NOT CARE, any more than you do, nor does Gilead, My GI specialist and not even YOU
You are rude and un supportive
YES This is not my support group,,,,,,,,,,,so {inappropriate content removed by moderator} ban me so that I may continue on in duress, discomfort and un supported by this hepmag site
morab

[Mike Conwell]

You tell them morab. They have no idea.!! We have reported it to the FDA, Gilead and I'm with you. None of them give a shit about us out here. I have reported and got no response or even acknowledged. {inappropriate content removed by moderator}

[Mugwump]

mitochondria damage might indeed be the key to why many who are now free of HCV experience all these adverse post treatment effects.

My suspicion is that it is a sudden upsurge of HCV antibodies which is playing havoc with quite a few who clear this disease.

The mechanism by which HCV is know to cause mitochondria damage is not at all well studied. But the debilitating long term mitochondria damage done by HCV that produces symptoms akin to chronic fatigue syndrome are well know. It was precisely this effect of HCV that lead to my being diagnosed with HCV in the first place. I did not have what one could call chronic fatigue but symptoms somewhat akin to it.

I truly hope that the serious problems that Mike Conwell and others are experiencing post treatment are soon understood as to the cause. But more and more it seems that some are experiencing long term debilitating effects which in some ways mirror what I went through leading up to treatment. So the only rational explanation that comes to mind is that there is still an agent left over that is running amok and the only agent that can still be produced once the virus is gone is antibodies to HCV.

So the study of levels of HCV antibodies in individuals post treatment might be a good start to find an answer to why some are experiencing terrible debilitating post treatment effects as well as a comparison between post treatment individuals on different DAA to see if it was indeed a component of Harvoni that caused the problems.

Here is hoping that answers come fairly soon and if it is indeed a knee jerk antibody bounce back effect that there is some easy way to mitigate the damage done by an extreme excess of HCV antibodies. It is only logical that HCV antibodies in large numbers might cause the same side effects that antibodies to the flu, colds and other virus infections are known to cause. One doctor who I know said to me about my father's death from the flu, that it was "not the flu that killed him but his system creating the beasties to kill the flu that did the deed!"

On the bright side at least it will not be a lack of liver function that takes me out now that HCV is gone. What scares me more is the damage done by the beasties that my body creates to get rid of the disease!

A truly Merry Christmas to all
Eric

[Lynn K]

Interesting observation Eric I hadn't considered the possibilities of antibodies running wild and causing problems for some people.

I haven't had an antibody test since I was originally diagnosed back in 1990 and I am sure it was a very different test 26 years ago anyway. I sure wish I had some comparative data points on this topic but I am sure my old antibody test is long gone it was done by the blood bank and like I said it probable could not be compared to the new type of test.

[Mugwump]

Interesting observation Eric I hadn't considered the possibilities of antibodies running wild and causing problems for some people.

I haven't had an antibody test since I was originally diagnosed back in 1990 and I am sure it was a very different test 26 years ago anyway. I sure wish I had some comparative data points on this topic but I am sure my old antibody test is long gone it was done by the blood bank and like I said it probable could not be compared to the new type of test.

Lynn the problem lies in the fact that there is no effective quantitative antibody test in use yet for HCV. Unfortunately there is only tests for a positive reaction not a level of antibody proteins in the blood and as we know the antibody test by itself is flawed to say the least

Like many have said we need an activist community the way that aids does in order for important research to get funding other than just dollar based biased drug company investments in research. If it wasn't for the genius of Sofir we would still be at the mercy of even fewer resources for treatment.

As we know antibodies have protein coatings that act as a kind of cell glue and the properties of the binding done by the antibody is how they work and are detected. It is also know that mitochondria are effected by antibodies and are the reason why one feels very weak when you get a serious disease. The antibodies to a disease can kill the host faster than the disease especially in the case of some virus strains. The energy producing engine of cells becomes damaged and bingo you feel like you got run over by a truck.

This is the reason why I suspect the real "bad drug Harvoni" effect is a knee jerk reaction in some people as the liver heals and can produce a swack of new antibodies to a disease that is no longer there. This would also explain why only some are seriously effected otherwise if it was a reaction to either or ledipasvir and sofosbuvir then many more would have had very severe adverse reactions to this treatment the same way ribavirin does.

You seem to be one tough lady taking all that shit. I don't know if I could have taken another course of it, it almost killed me in 2004! I was so weak that I could barely walk for about a month my blood cell count almost put me in hospital and I looked like the ghost of Jacob Marley for a year.

Cheers
Eric

[Lynn K]

Must be my lousy diet etc.

Basically I am the antithesis of what we all know we should be doing. I used to eat a hot dog washed down with chocolate milk and a cupcake for lunch every day for several years.

Right now I have an egg Mc muffin and coffee for breakfast most days no lunch and a TV dinner or a bowl of cereal. And maybe 20 ounces of water. A multi vitamin and a spironolactone. So maybe that is why nothing bothers me much. Just not very sensitive to chemicals. I have worked in industry and handled a lot of chemicals all my life also oils, solvents and fuels. And no known allergies. Just not a sensitive soul with a cast iron stomach.

I guess what doesn't kill me makes me stronger. Although ribavirin did kick my butt 3 seperate times. Hard to believe I was on ribavirin for a total of about 63 weeks combined. Thankfully I will never have to do that ever again I got very anemic every time. But fortunately rebounded immediately after stopping treatment.

Like the mental picture of Jacob Marley's ghost definitely paints a picture of what you looked like.

[andrew j]

Are you OK, Lynn?

[Lynn K]

Sure no problems working full time going to school no complaints except could lose 20 pounds and get some exercise. Doing fine at almost 59 years old. I guess it would be nice to have a higher platelet count and no edema though.

[andrew j]

Aye!

[Lynn K]

Arrrr! Lol

[andrew j]

xx.

[Sergey]

I did gain some weight over the years and currently 170 which makes my BMI 30 right on the line of overweight and obese.

Being overweight increases risk of progression... There is an interesting study, 35 years long observation of HCV-infected people - http://onlinelibrary.wiley.com/doi/10.1002/hep.26644/full . In this study, people with normal weight had 3.8% probability of getting cirrhosis 35 years after infection, and obese people had 21.8%. Some people in a study was treated, and probably, due to treatment these percents may be biased at some degree - but, in anyway, it looks like noticeable difference (more than 5 fold increasing of cirrhosis rate).

[Lynn K]

Yes highest risk male, obese and alcohol.

However for me female, became borderline obese recently was still not at range BMI  when diagnosed yes alcohol but not a heavy drinker.

Just lucky I guess

[FutureThinker]

I feel badly that this conversation keeps going off in the wrong direction.  It doesn't appear to me that anyone is being rude or does not care.  I think those of us who use this forum obviously do care, that's why we take the time to read and post here. If we did not care, we wouldn't use our personal time to come here.

Mike C and Morab, I am not sure what you want from us. None of us are doctors or researchers. We do not have the answers. We are listening, trying to provide objective suggestions/theories to help you find the answers as to why you are not doing well, but it does not seem to be what you want or need.

Can you tell us what we should be posting to make you understand we are supportive and care? FT

[Luna7]

 THE SPACE BETWEEN TRUTH

It's a fuzzy time, this space between truth...

Joe Camel smile
Cigarette in hand
Faded poster from times gone by
Doctor sells his brand                                 

Duped DrDaddy drones
Go with the flow
Laughing profiteers
Lining pockets more and more
                                             
But in this space a line is forming
Weary victims marching on
Bright torch of truth
Lights the way.

  Luna Bliss

[lporterrn]

I have carried a megaphone and signs and protested pharma practices for 18 years. I lobby; I contact my elected officials. However, when we are bantering around what "truth" is, lest us not forget the people who are dying from hepatitis C. My personal list of people I've lost to hep C is tragically long.

This Forum is where we save lives, not attack each other. I urge everyone to concentrate their energies to fight bigger battles. More people die from hep C than all 60 reportable infectious diseases combined. We are at increased risk of premature death from ALL major causes of mortality (cancer, stroke, heart attack, etc.). We are sorely undercounted and undervalued.

In my opinion, there's a bit too much preaching to the choir here. Want to make a difference? Rise up and get involved. Talk is cheap. Action is more likely to yield results.

Hope to see you on the front lines with me.

[jberlin]

Well said Lucinda, and as this conversation has seemed to go off the rails, that comment will be the last on this thread as it is now locked.

Hope everyone has a wonderful Holiday Season and a 2017 free of the dragon known as Hep C.

jack