hep c 1a

[theskier]

Has anyone with 1 a  for 35 to 40 years had complete success with treatment? Meaning no more symptoms, no more damage to liver, feel great and back on with life????

[kittyface]

I suppose you could go to an internist for your kidney problem.  I finished tx Feb 2009 so I'm about 1.5 years past.  According to a survey done in the UK, 35% of people experience some post tx complaints like mine, depression, fatigue, etc. and don't feel any better after tx.  But that means that 65% do ok, so the odds are in your favor. I was very responsive to tx and couldn't get out of bed for most of a year but it was worth it.  It's a very individual thing and takes some people longer than others to recover.  I do feel like I'm getting better with each passing month.

The HCV is probably complicating your other digestive system issues.  Don't want to sound like an alarmist but I think I saw a study where HCV patients are 4 times more likely to contract kidney cancer.  And also lymphoma.  This is why I believe in treating sooner rather than later especially with the new drugs that greatly increase SVR (sustained viral response, meaning clearing the virus).

[WriteItDown]

SOC = standard of care, interferon + ribavirin
PI = protease inhibitor, a new type of drug added to SOC
post tx sx = post treatment side effects.

For a list of common acronyms, scroll down on the main forum page and look on the right at the bottom.

[theskier]

Thanks for the encouragement. I wondered what PI's  SOC stand for .. oh and also post tx sx and Alinia is something I haven't heard of. My kidneys have been stressed for some time now. Did you have to go to another type of specialists to figure pancreas  problems.? This has been another frustration for me is I'm asking  GI specialists for information about liver and kidneys while all they are thinking about is how to get me in for a colonoscopy because of family history.Upon having many kidney symptoms I brought it up with the doc proposing the question of reducing salt intake right after procedure checking for esofigal problems . He laughed again and said that shouldn't make any difference. I think I have been going to the wrong type of doctor from the get go. I finally gave in to the colonoscopy. They removed 15 polyps and my stomach is still not right(8 months later) so this has been a distraction and has added new symptoms. I can only keep weight on if I eat big bowl of ice cream every night other wise I am lightnening up considerably. This middle age stuff is exciting. My mother' in law offered me up half her liver yesterday. She doesn't like to see me feel bad. She is 85 quite healthy but has post polio and has lost all use of muscles and is wheel chair bound. All of her organs have sluffed down around her belley. Bless her heart for being such a sensitive human being. Oh back to the subject. I wanted to ask how long since you completed treatment and do you have to continue taking  medications. Your after treatment issues don't sound fun. I wonder why so many symptoms? Is that the norm? Does it just take time to detox from the treatment? Just more curious questions. Also when they say people are clear of virus is the 6 month time the standard? I thought I had exhausted most of my questions and I realize now that these are basic questions and I am just learning to navigate and find out some of the info. This site and the folks that have responded have been very helpful so I am persisting with those who have and are experiencing this wonderful challenge.  Hope you feel better soon!

[kittyface]

I understand what you are wrestling with as I too was terrified of tx taking 4 years to summon the courage after reading the knowledge and experience so kindly imparted on this forum.  I had undiagnosed HCV for 25 years and was very symptomatic -- frequent fever, fatigue, swollen lymph nodes. I got sick of being sick and that's what compelled me to treat.  I had all the hope in the world that I would finally feel "normal" after clearing 1.5 years ago.

At this point I don't feel as well as I had hoped but despite that I would treat all over again to rid myself of the unpredictable deadly impact the virus and the accompanying inflammatory response from the immune system has on the whole body, not only the liver.  It attacked your gall bladder.  It attacked my pancreas and caused type 1 diabetes at age 54.  I am now insulin dependent and treating sooner might have saved my pancreas..  

To be honest I am having some issues post tx like brain fog, depression, anxiety, fatigue and teeth falling out of my head (ahhhhhhhhhhhh!).  But these discomforts are miniscule compared to liver failure and if I had stage 3 I would be seriously arranging to tx sooner rather than later.  If the PI's are released next year as an adjunct to SOC you may only have to go at it for 24 weeks which will drastically decrease chances of post tx sx.   If you don't want to wait then consider adding Alinia to SOC.  It has minimal sx and helped me clear.

Come back and whine as much as you like.  If it makes you feel any better I found that contemplating tx was actually scarier than doing it.  Once you get started you may find that it's not as bad as you imagined.  

[nygirl7]

We are all crybabies when it comes to stuff like this tim - you are not alone.

I am glad we could help, at least a little bit.

Best of luck.

[theskier]

We don't have a hepatolgist here but I heard there is a traveling one so I will investigate.So if these 2 competing drugs get fda approval the test show 70 % or thereabouts. That sounds encouraging. I guess the reason I keep questioning about those that have moved on was about the 50% and  now that I have thought about it .they must still be getting checked occasionally and so they are in fact included in the statistics so the 50% cure rate must be somewhat accurate. It is true I have little faith in most of the docs so I will pursue this hepatolgist. Thanks again for all your feed back. I am impressed how much you all have gone through and wish you long happy healthy life.  I think I have vented enough of my frustrations and have been given very helpful information. I am just a crybaby and am somewhat tired of symptoms. Thanks again, sincerely, Tim

[nygirl7]

That is what I mean there is no data base.

Actually there are many studies being done that you can easily read the results of online if you just google the news for telapravir or bocepravir.  Their studies are extremely exact as they have to be to get FDA approval (we hope) they have to PROVE without a shadow of a doubt how the meds work. I just posted one yesterday on here.

There is NO guarantee on anything though. Nothing is 100%. Interferon/ribavirin is about a 50% chance and that fact we know.

Whether sugar contributed to the vast amount of liver damage you have or not is completely irrelevent. HepC will destroy your liver all on it's own and a transplant would be your only avenue to pursue. Hepc also can cause liver cancer (my friend died of this, horribly) for which there is very very little hope of surviving, if any.

It's time to find a good qualified doctor and not worry about testimonials and such - the fact is that 50% of us succeed and 50% do not.  With the new drugs the odds go up but the trials are trials and subject to their own set of rules, risks and problems and also risks of worse side effects.

The time to treat is upon you.  Do you really want to wait until you are cirrhotic to do so? It will benmuch harder on you and your chances then.

[Trinity4]

You would probably get your questions answered more suitably if you consulted with a hepatologist as opposed to a GI.  Most hepa's know what is happening in trials and track progress and statisics.  Hepatologists are the best of the best and it sounds like you won't settle for anything less.

Trinity

[theskier]

So are the trial drugs having more success? Sure wish we could track all those people. That is what I mean there is no data base. I want to believe they are doing fine like you I would think if they are doing well they don't want to come back . On the other hand after going through all that maybe they could never face another round of anything. Thats really negative and probably far from the truth but it bothers me that we have no access to those thousands of people to hear their stories today.I realize my thoughts beat around the bush but I am already thinking of those behind me. I was hoping another year gone by there was something new....Are the competition drug companies offering up trials or is that just by chance in various regions?

[nygirl7]

Right now there is only one approved treatment on the market, interferon and ribavirin.  The new drugs are not approved yet.  We are truly hoping they will be soon however there is no guarantee, we've seen drugs that looked promising before that did not pan out (but not this promising).  Anyhow whether you get pegasys or pegintron the odds are the same they are both interferon after all.

you have to realize that most of the people who come here and treat then after they are cured move on with their lives and don't post on the forum any longer. Why would they they have no reason to think back to any of it.  Some of us however stay around to help new people and because we are friends and have a unique commraderie in here of shared experience. Without the folks that were here when I came in (most of who are long gone) I would not have succeeded and been cured today.

And yes I was a geno 1A and also 1B :)  Most of the people in here are geno1 because it is the most common in the US.  And really 1A or 1B makes no difference at all.

[theskier]

Great Bird and you all are probably right at this point and time. Is there a way to find the best combo drugs for patients with similar histories, geno types, damage, etc.... so you don't have your local gi doc guessing then change. Or is that the way it goes you are stuck with your docs drug plan and everything is about individual responses. These last couple of days are the first time I have ever communicated with other patients so I am really ignorant regarding  the whole process. I was just wondering If you all the group have tried to consolidate which combos are working on patients with similar history. The reason I ask is the doctors don't have the info like you all. Each one seems to have a different approach and patients in these forums trully have the results and can compare and maybe there is a consistency  that would help newcommers from trial and error. Patient data base type of thing. Or are we all at the mercy of our individual docs ? Those early interferon patients 1as, I really would like to hear some of there testimonies how they are doing now.

[Trinity4]

The disease progresses differently with everyone and that's the bottom line.  Certain factors contribute to fibrosis progression but eliminating alcohol or sugar does not guarantee advanced fibrosis will not occur.

Treatment is advised when the liver reaches stage 3.  If you choose not to treat, you may never have any problems but then you may transition over to cirrhosis.  It's your call, your decision, your consequences.

Trinity

[theskier]

I'm sorry I write a little confusing. I meant what a shock for you and your husband to discover how bad his health had detioriated and cancer and everything all of a sudden. I have known I had liver disease since I was 21 so there was no shock. I also didn't mean to assume how your husband has conducted his life. I am only trying to find out peoples personal health history in relation to progression of the disease so I can better understand my health. The reason why I asked these questions is my gi doctor accused me of alcohol abuse because of having a fatty liver in addition to other problems so I have been studying everything that is toxic to the liver and the body as a whole and examining my personal history. The doctors laugh at me everytime I have brought up too much sugar as a cause but there is a tremendous amount of infor regarding this poison relating to cancer. Common sense tells us that high stress, bad diet and lack of exercise etc.. makes us run poorly. I'm sorry but I have talked to enough of the specialists and for some reason they seem to ignore the quality of fuel and the effects and be quick to treat and do procedures. I am not negating personal choices and the effectiveness of the drugs, I just think we miss the bigger picture. I wish you and your husband long and healthy life and I thank him for going to Viet Nam and I am trully sorry about his health. I was being inducted when I shattered my leg in a ski racing accident so I did not have to go but I love and supported everyone I knew who endured that war.

[nygirl7]

5 years???? do I understand correctly that you have been doing treatments for that long.? "

No I didn't mean to mislead you I started treatment in Sept of 2005 and treated for 72 weeks, until Feb 2007 (at least that is how I remember it right now but it was over three years ago).

One thing Great Bird brought up - you don't know that you wouldn't have beaten the disease easily if you had treated.  The thing is the more close you get to cirrhosis the harder the odds to clear - this is why we all usually do treat when we are stage 3.......waiting until you have cirrhosis - and are older - are both negatives.

[theskier]

I don't know of any evidence and that is the sad part . That is why these GI specialist should have real detail on individual lifestyles so they could print out accurate statistics. If you walk into any crowded place in America and look around it is difficult to find a middle age american who is even close to a healthy specimen and these people are where the statistics are coming from. The average american eats poorly because it is difficult to come by fresh food that isn't adulterated. I am one. I am not obese cause I just couldn't go there but I have eaten the same as everyone else and the overload on the liver is overwhelming. I understand that the disease is like pac man on the liver but I am convinced that if we could remove all the other things that are taxing the liver that this miracle organ could fight the disease without being so distracted detoxifiying all the otherpoisons. There is a tremendous amount of evidence on sugar, corn syrup , liver damage and cancer. I am speaking in regard to the  younger who get this disease . They have a long time  to take care  of themselves properly before this disease will get them no matter what they do. If they could get a handle on their fuel intake early their livers might have a fighting chance.

[GreatBird]

You said: "The other point is if I would have jumped on the treatment wagon since the drugs became availiable I would have been through several regimens of treatment that have failed tremendously and really caused more harm than good."

I don't know how you can state that so emphatically. You have no way of knowing where you would fall in the odds. People did clear with treatment drugs fifteen years ago. What's for sure is that the odds have been getting better and better. Still, you never know how you will do until you try it.

I was first diagnosed in 2002. When I finally treated in 2008-9 I had the virus (1b) for at least 40 years, maybe 50. I was stage 1 on my first biopsy and there was no change after 7 years. I felt healthy for the most part. I had stopped drinking and eating badly about 30 years ago. My gall bladder has always been fine. I keep an eye on my blood sugar, and I don't overdo it with sweets. After my diagnosis, I read loads of first person reports of treatment and side-effects and after-effects. I saw the medical field come up with better testing and better predictability with outcomes. I saw two friends of mine die of liver disease.

Sure you can eat well and take good care of yourself and I truly believe that helps, but you can't change your genetics.

I entered a clinical trial that used the new meds and based on my VL drops (tested at 2/4/6/8/10/12/16/24 etc.) it's clear I would not have cleared without them (I had a load-in period of 4 weeks of SOC where my VL made little statistical movement). I was declared SVR last May.

I went into the trial sure I would ride an emotional rollercoaster of crankiness, lose much of my thyroid function, and feel like cr@p. The was wrong on the first two. I wouldn't like to repeat last year, but I'd do it again if I had to. Just keep your eyes on the prize.  

There is no certainty you won't suddenly progress. There's no certainty you will. There's no certainty you will clear. There's no certainty you won't. There's no certainty on how you will feel after you're done. On that one (however) be aware that there is a recovery period, especially if you haven't been active during the treatment period.

It's all a gamble, but if I were stage 3 with fatty liver (which is a problem in and of itself), I would jump on the new meds as soon as they are available.  

[eureka254]

It was little bit of a shock to read your response about my husband.

I'm sorry if I was not clear:  my husband is not demised, he is still alive and kicking, fighting the battle of his life, but hep c has NOT claimed him --yet.

We believe he was infected during his service in Vietnam as he has no IV drug use in his past, and in answer to your questions, my husband has not consumed any alcohol in over 20 years.  He does have a sweet tooth and enjoys colas, but his doctors have not attributed his cirrhosis to just consuming sugar and/or caffeine, nor have they mentioned stress as a contributing factor.  

No doubt there are many things yet to be known about hep c and the factors that affect its progress, but my husband's condition cannot really be blamed on alcohol or lifestyle -- even a perfect world with no stress whatsoever most likely would not have prevented this eventuality. ~eureka

[theskier]

5 years???? do I understand correctly that you have been doing treatments for that long.? I was discussing the value of depression or emotional weak times a bit ago that this virus causes. I never really looked hard at my diet until these last few years piecing together all the tests, doctors etc.. I know that alcohol really hammers the liver instantly so the liver can't handle the detox. I haven't drank but I had french toast or sweet breakfast, got to work pick up coffee and donut, cookies in lunch, soda or drink with candy on the way home then aftneroon snacks with kids then dinner with cake or pie and ice cream.hopefully no movie for more crap.I have never  been fat cause I have worked hard and didn't want to go there. I honestly looked at these habits during all those years.after the GI Doc laughed at me after accusing me of drinking alcohol when I  suggested maybe sugar . I have a fatty liver which he said is consistent with alcohol abuse. My theory is trickle feed an already over burdened liver with alcohol or sugar it is very much the same. The reason I hold to this belief is I am really trying to change and I am noticing lesser inflammation in my liver. I am due to visit the gi doc this fall to  hear his annual pitch about the tx , new drugs and potential ....This is a different Gi guy. Last time when I grilled him about clearing the disease. He did not know 1 way or the other if disease is trully cleared  or masked because people with alot of symptoms prior to treatment usually continue to feel the same and it takes quite a bit of time to see the progression of the liver. I don't know, thanks for responding,

[WriteItDown]

I am definitely in the camp of people who believe that how you live and what you eat and how much stress you have makes a big difference to your health. I am not questioning your ideas regarding sugar -- but I do think even if you didn't drink alcohol or eat any sugar at all, the hep C. could still potentially do great damage to your liver.

There's certainly no downside to quitting sugar, eating organic, and exercising.  I'll bet it will make you feel better and it will probably also help your liver.  But I don't feel nearly as confident that it will halt the progression of the disease.  If you know of evidence to the contrary I'd certainly be interested to read it.

[nygirl7]

Don't beat yourself up Tim I'm pretty sure that eating sweets didn't do this to your hepatic system, the hepC did.  You've been active and taking care of yourself otherwise your whole life - I'm sure that helped keep you from reaching stage 4 otherwise. You done good. :)

There are definitely tons of people who have cleared and have achieved SVR.  In fact most of us posting in here are SVR today. Treatment wasn't fun but certainly it was not what I had expected at all. I never really had any flu symptoms for one thing. Lethargy and anemia definitely but they are not permanent and begin to dissapate after tx conclusion.  I admit I"m not the spring chicken I was when I started treatment 5 years ago but being at the point in life where I am....that was going to happen anyway.  At least this way my liver is healthy (what is left of the healthy part anyway) and not progressing into liver failure.  So that was a fair trade off for real.

You can always start and see how you are responding at week 4. See also how you feel and are doing with the sides. If you aren't making big headway against the virus or if you are finding it too hard you can always stop and wait for the new drugs. The thing with the new drugs is due to viral resistance and mutation and all sorts of complicated stuff (over my head) you can only get one shot with them. That is why some choose to try to beat it now - so basically you get in at least two good fights in while you can!

[theskier]

Thanks for your response. I just spoke with my mother in law whom has spent a life educating herself. She said the only difference between alcohol and sugar intake is the speed at which it gets to the liver. I didn't drink alcohol but I have consumed my fair share of sweets on a daily basis which has trickle fed the liver poison while the virus was already attacking. My point being if I was a good little boy ate like a true athelete avoiding sugar, fats, etc... and consumed pure organic food along with healthy air and excercise then the liver which is capable of rebuilding itself could maintain and fight the virus without causing excess damage. I am making this point because there is no research being done on all of us patients that really examine every aspect of our lives ( air, stress, nutrition etc.... The other point is if I would have jumped on the treatment wagon since the drugs became availiable I would have been through several regimens of treatment that have failed tremendously and really caused more harm than good. I am aware they are getting better but I sure am having trouble finding real postive testimonies .There are too many that are showing cleared then relapse!!!  Sincerely Tim.

[theskier]

I'm sorry  about your husbands demise, what a shock this must have all been. I do wonder about his lifestyle. Did he drink or do drugs legal or not or fast foods, pepsi or coke drinker, high stress . I'm curious. You don't have to tell me but I did consume alot of sugar which I believe is the culprit for my damaged liver. Its the same as alcohol.Many reasons I ask but mainly for the young people who are contacting this disease if they knew what they could do daily to slow down the liver disease. All the statistics seem to point to 30 years before people have signifiacant symptoms. I believe the statistics are not very accurate because there is no serious background check on patients to examine every aspect of lifestyle. "Stress" alone is huge for me . I just wonder if we had the means to live in the garden of eden without stress that the liver could fight the battle.

[WriteItDown]

Welcome to the forum. I'm sure you'll get a lot of different perspectives here.  

For my own part, although I do believe that eating a lot of sugar isn't very good for you, I don't think the sugar is the cause of your liver problems.  The hep C. is.  It's true that for many people the disease progresses very slowly; but it seems to me that for many others, especially after having had it for a long time, it can start to progress more quickly.  Personally, if I were a stage 3, I would start seriously to consider treating.  The new drugs have raised your chances of success from about 40-50% to about 75%. Nowadays they can tell pretty quickly if the drugs are working, so that you can quit treatment after a relatively short period of time if it's not working. Also, some of the new drugs reduce the treatment period from 48 weeks to 24 weeks, which is much more tolerable.

My husband (Genotype 1b) treated last year after having had the virus for probably around 25 years.  He was still only stage 1-2 and felt perfectly healthy. The treatment was difficult for him, but certainly not terrible.  Now he is considered cured and feels great.  He does not have any long-term side effects.  There are plenty of people on this forum who have similar stories.  Of course there are also people who have had much less fortunate outcomes. I think the more you research and learn about the disease and treatments available, the better able you'll be to make an informed decision for yourself.

In any case I wish you the best of luck!

[theskier]

I must say the more I read about treatment the more terrified I am. I have suffered for many years of my adult life with symptoms so similar to what treatment does. I really feel for those who suffer and have little success yet I admire everyones boldness to try these ratical chemicals to rid this pesty liver mulching disease. It seems clear to me that many people who have carried the virus for 35 plus years have had gall bladder or bile duct problems. I have always believed that is what diseased my gall bladder and caused the sphincter at the end of the common bile duct to go bad(only my theory). After having 15 polyps removed from my colon last Dec. my stomach is still sore. I suspect there is a problem and need to find out. I am becoming more reluctant to let these doctors guess what is best for my health based on there lousy compiled statistics. I am 58 and am trying to figure what is worth addressing. Colon, hep c, prostrate? How long do you suffer through various treatments and when and if you get to the other side whats left. I know suffering is bad  yet death is inevitable. Tough decisions and I would like to continue playing in my garden and enjoying the paradise I have been fortunate to live in. I weep for those less fortunate that suffer real pain and loss....innocent  victims in countries that can't defend themselves from fear bullies. The good thing about hep c is that overtime it does cause depression which makes you examine yourself and everything around you which makes us sensitive where before we might have been more calloused to those who suffer. Ever since they came up with treatment drugs I have refused because I panic and research and haven't liked the outcome. I know this was wise through all the early drugs because they were failures for the geno 1 a with significant liver damage. I am aware they are getting better as I read all the testimonies but it appears to me many people treat because they found out they have the virus yet have little or no symptoms. I just wonder if people in my age group applied good nutrition, no alcohol, tylenol, avoiding every thing that is toxic to the liver that this disease moves so slowly you will live long and feel well (I'm referring to people that feel good and don't have too much liver damage. When I was 21 years old my doctor diagnosed (chronic active hep, this was prior to hep c) and said avoid alcohol and tylenol. I complied but was young and dumb and didn't understand the importance of nutrition. I love candy, ice cream and cookies along with normal food. I have never been much into fast food or regular soft drinks etc...I was an athelete and needed to feel well to perform. I had a biopsi in 97 and had scar tissuse.2005 biopsi indicated stage3. Doctor accuse me of using alcohol based on  liver looks like fatty liver common with alcohol abuse. Long story short I  didn't like him but he caused me to research. "Sugar " I am convinced has been the culprit for such ratical deterioation in my body. When I mentioned it to this cocky GI specialiast he laughed at me. I wonder how some of these docs got through chemistry!!! Enough for now I am sorry if I am offensive in any way, I am just not convinced that treatment is the right trail for me at this juncture. On the other hand I sure would love to feel good and move on to the next hurdle. Thanks for listening and I still am....