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475555 tn?1469307939
Infected 45 years and still only F1? Is it possible?
Hi, guys. It's me, Mike the forum lurker, back again with another mind-twister question that will no doubt cause dissention and get me into trouble, but here goes:

Has anyone here ever heard of someone having HCV for over forty years and still being only at the F1 stage of liver fibrosis?

This is the story (I say "story" for lack of an adequate censor-passing epithet) that my hep MD has been feeding me for a year now. He says that from my medical history I probably got infected from contaminated blood when I had a motorcycle accident at the age of nineteen (I am now 65) and was transfused at the hospital that treated me for concussion.

Personally, I think this story is a lot of self-serving hooey, and that in reality I was infected by a bad dentist here in Argentina just a few years ago.

My biopsy six months ago showed F1-F2 fibrosis, but my blood markers and GGT have been going steadily upwards in a continuous progression through eight blood tests over the past 14 months, and I definitely do not have the energy I had even one year ago.

So, my hep MD thinks that I was infected 45 years ago and am a very slow progressor, and I think that I was infected a coupla years ago and am progressing rapidly.

This is not an academic question. My hospital is postponing treatment based on their diagnosis: they think I can wait a few years for a better tx. Whereas I think I may have cyrrhosis before they ever get to my next biopsy.

What say you all? Is it possible to be F1-F2 after forty-five years of HCV?

Mike
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Avatar universal
I request medical records for a living (law office) so it was no big deal for me to get my old records.

Here's what to do:

Send a signed letter to each medical facility you want records from and tell them what you want.  (I asked only for copies labs from some facilities because there is a fee for copies but from the doctors I asked for all records when I knew there wouldn't be too many copies).  State your name (and any previous names, if any) and birth date and tell them the approximate years you would have been seen by them.  Be sure to sign the letter otherwise they will send you a release that you have to sign and send back to them.  Some of them might do that anyway but a signed letter sometimes will satisfy them without the release.  Of course, if you are requesting someone else's records you most definitely have to have a release signed by the individual.

You are right that some facilities are destroying records (the law in my state says after 7 years it's okay to destroy records but I personally feel that's a crime to be able to destroy medical records without offering them to the patient first).   You will, however, probably find that you will have greater success than you are expecting.  

As I said in my earlier post, I was able to get all my records back to the early 70's.  The only reason I didn't get them back further is because I just stopped there.  I could still send a letter to the small town doc office where I had my care from age 5 until age 16 but I highly doubt they ever checked my LFTs...because I was sick and never had to be taken to the doc except for vaccinations.  I was satisfied with the information I got to that point.

Many people say "just forget about when and where you got it" but I found it to be a cathartic process for me and I got much satisfaction with the information it gave me.  Sometimes the unknown can just nag at me and I was able to put the nagging to rest.

Good luck Mike.  I most certainly understand your desire to find out more about "when".  
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A couple more tips:

Address the letter to the medical facility (Attention:  Medical Records) and also ask them to let you know if there is a charge for the records (give your phone number as a call back if you want) so that you can have a heads-up on how much it might cost.  Some charge the patient for copies and some don't.
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correction....   "because I was NEVER sick and never had to be taken to the doc except for vaccinations."
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Hi everyone,

Well, I am grade 0 stage 1 - I am 41 years old and contracted hep C when I was around 21 - I was a phlebotomist in a hositial in the early 90's. The virus was hitting the scene pretty fast then.

I am waiting for any traditional therapy - it all seems rather bad right now.  The hardest part living as a carrier is of course dating.

I would like to know who on this list that has carried for so long, has given it to their partner?  I am very interested to understand this more and more esp. as I am single now and recently had a guy not move forward in a relationship b.c of the hep c.

Has anyone passed it on - I have dated in the 20 years that I have had it and have never passed it on to anyone.  The websites really do not have good information out there, I think mostly b.c they do not have any real situations to report.

Any thoughts on this?

Thanks.

Doggie
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Reading all your histories gives me some hope for minimal damage,as I am waiting for my biopsy results
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475555 tn?1469307939
Good thing you quit drinking.

Bahia La Paz looks swell. Must be a great harbor for sailboats. Reservame una hamaca en la playa, ya llego.

Mike
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475555 tn?1469307939
Thanks for the info on getting medical records. I´ll give it a try, although I frankly can´t imagine the hospital in California keeping records from 1964. Still, if I could prove I didn´t get a transfusion, that would be a big help in dealing with my hepMD.

Lord knows when I had a hepatogram/blood test done. I think I´d need the help of a shrink to remember [grin].

M.
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475555 tn?1469307939
Hi, Doggie. I hear you on the dating problem. I am not currently in a relationship, but it´s a real can of worms. Everyone pretends that they´re straight with safe sex, but when it comes down to the nitty-gritty...

Tel me, did you get infected on your job as a phlebotomist? If so, how did it happen? I´m very interested, if you don´t mind sharing that with us.

M.
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619345 tn?1310345021
Doggie it was my first concern I discussed it with my doctor as I have had different sexual partners over the years  not one that I know of has contracted the virus from me
as I always thought I had Hep B at 17 but was misdiagnosed as recent tests showed I never had Hep B they just didn't know what it was back then I went to a specialist in Berkeley CA  since I have always told dentists and doctors I had many manicures and pedicures over the years and surgeries too always told my intimate partners and husband never gave blood because of it so I really do not know what to say just truly hope in my heart I never infected anyone it really leaves you with a sense of unknown guilt?

Not in a relationship now or have I been for a while and now that I am dx a bit leery of dealing with the whole situation  

However from what I understand from the Doc and from the forums  It Is Very difficult percentages wise super small  
to transmit the virus through normal sexual practices

Really rough or violent sex where blood is exchanged may be very risky

baja
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Let me know if you have any success with the records search and, if you do, what it turns up.  Good luck.
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866339 tn?1255936592
Hi was reading this forum and was wondering if anyone could help explain the difference in  VL 800,000    and  VL 13,600,000  I was trying to think when I contracted it and remember Donating Blood via Red Cross in the late 90's.
Ex hubby had a fling and found out a few years back his G/F passed from HCV
also received a tatoo in the early 2000's   so I guess I have a choice...  But was wondering about the higher the VL #'s
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475555 tn?1469307939
Will do.

M.
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85135 tn?1227293372
Viral load changes. Sometimes up, sometime down. That is why it's recommened to get your VL at the start of tx.
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866339 tn?1255936592
TYVM  I already have. just wonder even with  constant changing what is the importance of the VL?
Thanx again
Pat
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If your not on treatment the only difference viral load makes is that low viral load is easier to treat. There is no difference between high and low viral load in terms of how severe the disease is or how much liver damage you have. Viral load can go up and down.

As stated, if you decide to treat, low viral load gives you a better chance of being cured although the majority of people have high viral load and can also do very well on treatment.

Once you start treating, viral load becomes much more important because the rate of  viral decline significantly determines your chances of being cured.

-- Jim
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866339 tn?1255936592
hat is a very good explaination of what I was asking  tyvm for taking the time and putting it into layman terms for me, Believe it or not I have never had it explained in such a simple form ...at least nor where I can digest it so fast... tytyty   LOL
I truly do love this forum and the gang.
Pat
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Another long-term slow progressor here.  Probably infected in 1961 (at age 5) via blood transfusion.  No symptoms at any time.  Biopsy in Dec07 after 41 years showed stage 1, grade 2.  Finished 6 months of treatment with peg/riba/telaprevir in Jan09.  Still at zero viral load on April 15.  Hoping for good news in July.  Yeah, if you're lucky you have a really really long time before this virus'll get ya.
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Hi Mike, I was infected with Hepatitis C 45 years ago when I gave birth to my only child. At the time, Scripps research foundation called it an Unidentified Virus as there was no name for it in 1969.  I was very ill for about two years only because city doctors where killing me with Antibiotics. My organ began to shut down. Apparently, doctors did not know the antibiotics are not affective for a virus and only make the body fight harder.  This caused Cytomegalow virus confusing my cells.. At any rate, after two years of city doctors, the doctors at Scripps immediately took me off all medications.  I began to heal, but never with the same vitality I had before the onset.  However I remained fairly healthy and active through the future years,, more so than many not affected. It was about 1989 or 90 that I was told the virus had a name Hepatitis C...
   Today I am 68 and I find my self sleeping much more than I did and not as much energy as I should have.  Actually, my doctor is amazed that I am still not having sever symptom as many with Hep C.  I do know that when I stop taking the vitamins I take and a special herb vitamin (Nu-Liver) which I can only order online, I notice a great difference in my energy. I have been taking Nu-liver, and Q-10, Herb Multiple, B-12, Milk thistle for years.  Today I seldom go to a doctor.  There is nothing they can do for me.  To me, current treatments are killers.  Even my doctors tell me the treatments are not a cure and simply hide the virus for a period, and these are research doctors.  They have never recommended treatment for me and say:  "Whatever you are doing, keep doing it because it is working.  So yes, I have had Hepatitis C for 45 years and still kicking.  Just old now.  But my doctors did say, that because my body has been fighting this virus for so long, that my organs are probably older than my age, meaning I will probably die earlier than my family history in the 90's. My advice would be to eat good food, take vitamins and sleep until your body awakes on its own.  This is what my doctors told me. By sleeping until your body wakes on its own, your liver has stored enough energy to begin the day.  For how many hours will depend on your liver status.  This really does help me.
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I think its great that you have done so well for so long.  Knowing you had the virus gave you an opportunity to take of yourself in a way that protected your liver from getting severely damaged. Unfortunately, not everyone knows they have the virus until their liver is severely damaged, my husband being one of them.

So our hope is that this virus can be cured with these new treatments because that is his only opportunity for survival.

I think if I were you I would not lose out on an opportunity to possibly live a little closer to those 90's. But that's just me.

I wish you the best. May you continue to feel good and live well.

Nan



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1840891 tn?1431551393
Suzy, this is a very old (2009) post you responded to. I think if you visit a good hepatologist at any large facility now, you will find a great deal has changed since the days when doctors gave the kind of advice you received in the past. HCV is much easier to defeat now than it used to be. The drugs are still not very easy but they are improving at a rapid rate, especially for those who are treatment-naive. SVR (sustained viral response) is achievable for the vast majority, and it is not thought of as a mere remission, but as a permanent cure. It is exceedingly rare for the virus to return after one has achieved SVR (defined as being unable to detect any viral RNA in the blood at the end of treatment and for at least six months after end of treatment). You may still choose to surrender to the virus and to the risk of dying from liver failure and/or liver cancer, but you should make that choice from a fully informed position, knowing the actual status of your liver, the possibilities of treatment and odds of success, the expected difficulties and side effects of treatment, and finally, balancing those risks against an informed understanding of your personal risk of liver failure/liver cancer (longtime HCV infection brings much increased risk of this cancer) and an understanding of what that would bring.

I'm 60 now and in 2013 I finally achieved SVR after having the virus since 1984, having cirrhosis since 2004, and having undergone three very difficult treatments. Those treatments were probably far worse and much longer than what you would have to do if you pursued treatment now, in fact, they were hell. In the same situation I would definitely do them again however. I know a lot about what it is like to die of liver failure, and I would choose treatment again over and over if I had to, to avoid that kind of death. We all have to die of something, but that, in my opinion, is one of the hardest ways to go. Its a personal decision, but you should make it with all the current facts available.

Your supplements are probably helping your liver to function somewhat better than it would otherwise function, but they are not curing you of the virus, and the virus is still working every day at killing more liver cells. No decent hepatologist today would tell you to just keep doing what you are doing, except maybe if you had already flatly refused any kind of treatment. The supplements are probably better than nothing, but not by very much. I hope you will reconsider whether it is in your best interests to remain ignorant of the current status of your liver and ignorant of the current possibilities for treatment and eradication of the virus.  Personally, I hope you will seek out a good hepatologist at a large institution, preferably one capable of liver transplants (not because you want one, but because these are the doctors who know the most about treating patients with seriously damaged livers, and your liver is almost certainly in that category after living so long with HCV). Best wishes, and may you always be content with the choices you are making.
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1840891 tn?1431551393
On re-reading my post I've realized it sounds kind of condescending and I really did not intend that. I apologize! I can't help doing sermonizing some, because I feel so strongly about this subject, but I do mean to be respectful of others at the same time. Please try to mentally subtract the condescending qualities of my post!
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suzy2000 can offer her own experience and personal opinion about how she treated herself such as "I take and a special herb vitamin (Nu-Liver) which I can only order online,"

FYI for anyone reading posts at this site if you haven't already or can't remember please read the small print at the bottom of every page.

Because these forums are public, search engines may show new topic post or replies to older topics nearer to the top depending on the search terms.

I am not a doctor nor a medical expert and can not say that any specific herb, remedy or other natural substance can cure, reduce, have no effect or even be harmful to someone with Hepatitis C. But when I see a statement like "only can be ordered online"  for me that's a red flag. If it's not carried in a local health food & supplement store even they could be concerned about potential legal problems.    

In many countries including the US, only a medical doctor is legally allowed to make a diagnosis and prescribe treatment for a specific medical condition.  

Because HCV progression can be very long some early attempts at treatment like antibiotics or even INF & riba can cause serious side effects that may get better when treatment is stopped. Just because someone started taking natural herbs or not is not any real proof that the herb is making it better.  Many people with low fibrosis and/or no or mild symptoms may do well for many years just following medical advise for chronic HCV.  

About (Nu-Liver)
http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm162771.htm
This is to advise you that the Food and Drug Administration (FDA) reviewed your websites in March 2009 at the Internet addresses: www.nu-liver.com, www.hepatitisc-remedy.com, www.nu-liverpc.com and www.storesonline.com/members/459211/hepatitis-c-herbs.htm and has determined that the products “Nu-Liver” and “Nu-Liver PC” are promoted for conditions that cause the products to be drugs under section 201(g)(1)(B) of the Federal Food, Drug, and Cosmetic Act (the Act) [21 U.S.C. § 321(g)(1)(B)]. The therapeutic claims on your websites establish that the products are drugs because they are intended for use in the cure, mitigation, treatment, or prevention of disease. The marketing of the products with these claims violates the Act.
....
...The reference citations and other claims are supplemented by metatags used to bring consumers to your websites through Internet searches. Examples of these metatags include “liver disease treatment,” hepatitis C treatment,” “hepatitis C remedy,” “hepatitis remedy” and “liver disease remedy.”

Your products are not generally recognized as safe and effective for the above referenced uses and therefore, the products are “new drugs” under section 201(p) of the Act [21 U.S.C. § 321(p)]. New drugs may not be legally marketed in the U.S. without prior approval from FDA as described in section 505(a) of the Act [21 U.S.C. § 355(a)]. FDA approves a new drug on the basis of scientific data submitted by a drug sponsor to demonstrate that the drug is safe and effective. Your products “Nu-Liver” and “Nu-Liver PC” are also misbranded within the meaning of section 502(f)(1) of the Act in that labeling for these drugs fails to bear adequate directions for use [21 U.S.C. § 352(f)(1)].....

http://hepatitiscnewdrugs.blogspot.com/2010/11/hepatitis-c-fda-sunday.html
Chronic hepatitis C and those questionable websites profiting from individuals suffering with chronic illness.
Therapy for Hepatitis C is an arduous treatment regimen currently with a less then desirable success rate. The majority of people infected with HCV seek out medical treatment while others search for a more alternative approach, however both groups may turn to the Internet.
The latter group of people seeking an alternative may find themselves a prime target for online medical quackery. The Internet is full of sophisticated marketing ploys with snake oil salesmen ready to take advantage of the numerous people in this unfortunate situation. The operating method used by these unscrupulous websites is to prey on the fear or uncertainty when diagnosed with a chronic illness. As humans we have an innate ability for survival at any cost. With these emotions in place it isn't uncommon to justify a few unrealistic expectations. Hence we begin a search that may lead down the path to a potentially dangerous result.
Chronic illness is a good investment for any entrepreneur especially when all ethics are effectively dismissed. Thousands of these all-purpose, herb selling, self promoting salesmen; are waiting online to finance their new enterprise.

General for Herbal medicine University of Maryland Medical Center
it is important to consult with your doctor or pharmacist before taking herbal medicines
http://umm.edu/health/medical/altmed/treatment/herbal-medicine
excerpts
Is there anything I should watch out for?
Used correctly, herbs can help treat a variety of conditions, and in some cases, may have fewer side effects than some conventional medications. But because they are unregulated, herbal products are often mislabeled and may contain additives and contaminants that aren’t listed on the label. Some herbs may cause allergic reactions or interact with conventional drugs, and some are toxic if used improperly or at high doses. Taking herbs on your own increases your risk, so it is important to consult with your doctor or pharmacist before taking herbal medicines. Some examples of adverse reactions from certain popular herbs are described below.

Some herbal supplements, especially those imported from Asian countries, may contain high levels of heavy metals, including lead, mercury, and cadmium. It is important to purchase herbal supplements from reputable manufacturers to ensure quality. Many herbs can interact with prescription medications and cause unwanted or dangerous reactions. For example, there is a high degree of herb/drug interaction among patients who are under treatment for cancer. Be sure to consult your doctor before trying any herbal products.


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475555 tn?1469307939
Hi, Suzy.

Thanks for telling me your personal history. I found it very interesting. Although I'm not convinced that the new meds won't eliminate the virus, I do believe that a good combination of nutrients and supplements can do a lot to slow down liver damage. And of course diet and exercise are super important.

I think your idea of sleeping as long as your body wants to sleep is very good. I've been practicing it all my life. Unfortunately, it has ruined my work life. I can't keep a work schedule because I never know what time I'm going to get up, and I frequently have to lie down during the day. Of course, no one understands.

Keep up the good fight, Suzy.

Mike

Sorry to hear what all those bad pill-pushers and saw-bones did to you years ago. I have no great love for doctors, believe me. A researcher friend once said to me: "We do all the work, they (the MDs) make all the money". That about sums it up. One doctor in a hundred went into the business (I don't consider it a profession) in order to help people. The other 99 just wanted the money.

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475555 tn?1469307939
I agree with you that with the new non-IFN med regimes, which have hardly any side effects, there is really no reason not to treat, at any age. If you can get the meds.

Mike
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I have done all you suggested.  Some of the top doctors do not recommend I treat as it may make me more ill and less able to fight the virus as my body has been doing.  Doctors will not tell you this, but there still is no cure. I am 68 and doing quite well considering.  Research doctors still claim to me that the virus is just hidden and there is no absolute cure.  And often, the treatments makes a person worse off than before they began treatment, putting more stain on their immune system..  There are some if caught early enough, do conquer the virus, but those are not the majority, especially if you are 68 years like me. I still see the research doctors about once a year.  I just don't go to city doctors much because it was city doctors that almost killed me from them being uninformed.  Even after the researchers information, they still did not understand the seriousness of the virus I had.  I know they are more informed today, but I simply do not put my life in the hands of another human.  I know what works for me.  And again, the doctors still tell me to keep doing what I am doing because I am far more healthy than many of their Hep C patients., so much so they are amazed.  Heck, I am 68 now.  If Hep C was going to kill me, and it is such a slow process, how much older can I get?  I think I still have 10 years or so before the virus disables me or something.  Heck, that would make me 78.  How long can I live?  I just will not put myself through the painful treatments.  I don't even believe in Chemo for cancer as I have seen it kill too many of my friends that would have lived longer.  My mother had the worst cancer in her back at 60. She refused treatment and lived to be 89 years old with no effects of the cancer until her very last year. Chemo would certainly have killed her and her immune system that stayed so strong for so many years. It is my belief she hindered the growth of the cancer with a special herb formula, formulated just for her from a Chinese Dr. in NY. . Doctors said Mom would die within a few years without Chemo etc..  She proved them wrong. She lived another 29 years with a dormant cancer next to her lungs and back that was supposed to be the fastest growing cancer. I am glad she refused treatment for cancer.  
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  Doctors will not tell you this, but there still is no cure.
--------------------------------
To any new forum members reading this thread....this is absolutely and categorically factually   'incorrect"

  Also said: above "I just will not put myself through the painful treatments"
---------------------------
ditto for this opinion to as tx. today is for the most part not at all painful shown by extensive reasearch


Also said above:
There are some if caught early enough, do conquer the virus, but those are not the majority
----------------------------
Factually incorrect ...........as extensive docummented reasearch with 100's of thousands in studies and treated clinically show cure rates of approx . anywhere from 50 to 100% with most studies showing currently  approx.  80 -90 %..   This is  by far  "THE MAJORITY.

Also said above: Some of the top doctors do not recommend I treat as it may make me more ill and less able to fight the virus as my body has been doing.
------------------------------------------
Possibly this is the case for the above poster personal case ,,however shown by the extensive research ..,,not factually correct for most(as shown in link below

.http://www.todaysthv.com/news/story.aspx?storyid=197143

.About 3.2 million Americans are estimated to have chronic hepatitis C, but at least half of them may not know it. The virus, which affects 170 million people worldwide, can gradually scar the liver and lead to cirrhosis or liver cancer. It is a leading cause of liver transplants.
      
A CDC study published Monday analyzed a decade of death records and found an increase in death rates from hepatitis C. In fact, in 2007 there were 15,000 deaths related to hepatitis C, higher than previous estimates - and surpassing the nearly 13,000 deaths caused by the better-known AIDS virus.



Everyone here is more than entitled to their opinions...  however expressing them as if they are facts  is grossiy misleading to other members

Best...
Will
.  

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1840891 tn?1431551393
I wish you continued good luck and especially hope you are fortunate enough to outlive your HCV. I just shudder at the thought of liver failure being the end, as from what I've seen and read, it is an exceptionally unpleasant way to end life, and I am extremely happy and relieved that I no longer have this virus attacking my liver. Mine was getting way too close to the end of the line, with full cirrhosis having been present for at least 10 years, and I couldn't risk any more damage from the virus. It has been undetectable in my blood for over 2 years now, since about  6 weeks into my final treatment for it, and my hepatologist tells me that while my liver may never fully recover, it will be gradually getting healthier all the time. I do use some supplements to try to help it get healthier, and I think they are probably more effective when their good work isn't constantly being undermined by continued viral activity.

We do each have to make our own decisions however, and you clearly have very strong personal beliefs regarding treatment and perhaps about the medical profession itself.  I just hope you continue to feel good and to be content with your choices. Best wishes!
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317787 tn?1473362051
Hi I just saw this and wanted to say that I am cured.  Many many of us are cured.  The virus is gone, my blood work looks better than is has since the late 80's.

I have a family member who had HCV and treated it a few years before I did, he is cured.

I know a couple of others, not on this forum who have been cured for many years.

The odd thing about him is that he got it when he was about 14 so had it a very long time til 48 or so.  He drank for many many years. A 6 pack a night and a case on the weekends.
He was an F2.  The doc could not believe it so he tested him again.  Then told the guy that he was very lucky not to have more damage.

Take care
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I wrote an explanation but my post was not permitted.  I think because I voiced facts I leaned about the FDA and Pharmacy/doctors profits. Sorry, I have no faith in the FDA.  It is each persons choice weather to treat or not.  I see top doctors once a year at Scripps research foundation.  I travel to San Diego from Texas.  I stay in the institution a few days of testing once a year.  This is the hospital where all the movie stars go to be treated and it is very costly per day. These doctors at Scripps will not lie or cover for another doctor who has made an error. Through an experience with my sister, I know this for a fact.   I DO NOT YET HAVE CIRRHOSIS. That's quite good considering I have had this virus for 45 years.  But I realize there are different strains of the virus.  I do not drink alcohol and never have. As far as being cured with the horrible treatment, I still say what I have been told.  Eventually the virus shows its face until there is an absolute cure. Example, if one was to start drinking a lot, the virus could resume. I believe when they say you are cured, it is simply dormant, just like a cancer can be dormant and suddenly show its face. I tell you the truth. Many doctor tell me the virus hides.  All I am saying is if you think you are cured to live a healthy life style and perhaps it will not come back.  I choose not to take myself through horrible treatments and my doctors say this is okay for me.  My faith, I know the Lord will bless me with enough good years.  Did not mean to discourage anyone.  To each his own.    
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Apparently some Scripps doctors believe that HCV can be cured.

"Scripps Research Institute Scientists Achieve Most Detailed Picture Ever of Key Part of Hepatitis C Virus

A Silent Killer

There has long been an urgent need for an effective vaccine against hepatitis C virus. Once confined to isolated geographical regions, the virus spread globally during the 20th century, chiefly via blood transfusions, unsterilized medical instruments and re-used hypodermic needles. Although hospitals have screened blood products for hepatitis C virus (HCV) since the early 1990s, as many as 200 million people currently are thought to harbor the virus. These include more than 3 million people in the United States, where the virus is responsible for more deaths each year than HIV.

HCV was able to spread so widely because it typically causes few or no symptoms when it infects someone. In many cases it establishes a long-term infection of the liver, damaging it slowly for decades—until liver cirrhosis and/or cancer develop. “It’s known as a ‘silent killer’,” said Law. Expensive and risky liver transplantation is often the only way to save a patient’s life. Some antiviral drugs are useful in treating and even CURING CHRONIC HCV INFECTION, but the more effective ones are extremely expensive—and most HCV-positive people don’t even know that they’re infected and need treatment...."

http://www.scripps.edu/news/press/2013/20131128hepatitis_e2.html
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979080 tn?1323437239
"......live a healthy life style and perhaps it will not come back "

Oooh please not this again......

When you are cured you are cured. The virus is considered eradicated .


b
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Amen!
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I think you have done an incredible job taking care of yourself and your liver.
I would just like to say that amazing things are happening in medical research in general. I do not agree with you that Hep C can not be cured but I certainly agree that you are entitled to your opinion.

This video is why I believe the best is yet to come in HCV treatments and prevention:
http://www.youtube.com/watch?v=8gRJMaCa3IM&feature=youtu.be

I respectfully suggest you keep yourself open to the possibility of being cured of this virus sometime in the near future.

Best.
Nan
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475555 tn?1469307939
Hi, all!

Just thought I'd put in my two cents on the question of "cure". I've had some experience with this still-debated issue, as I worked for five years on a bibliographic research project on HIV at the Pasteur Institute in Paris. And while HIV is not HCV, they are both viruses that work slowly to destroy you.

The thing about viruses, or at least most viruses, is that they are intracellular pathogens. This means that they go inside cells, primarily in order to use the cell's machinery to replicate themselves. Thus there is always the posibilty of cells, whether of the liver or some other tissue, harboring the virus even though blood in blood vessels shows no trace of viral RNA.

This is what is probably happening when people do Tx, achieve SVR, and then relapse later on. It's not necessarily because the VL tests used to determine "undetectable" were too insensitive to register the few virions still in the blood. It can also be due to virus that was not in the blood stream, perhaps not even in the liver, replicating again in cells in sufficient amounts so that some virions end up in the blood.

When a pathogen is under attack it tries to protect itself, to survive. One method of doing this is to mutate, maybe even to become more virulent. Another way is to stop presenting viral antigens on the surface of infected cells so that the immune system can't spot them. Still another method is to hide inside cells and stop replicating, at least for a time.

Smart doctors who treat infectious diseases, and the microbiologists who search for ways of fighting pathogens, have become hesitant to speak of "cure" when it comes to viruses. Too little is known about the strategies of viruses to hide and survive. For example, some of the herpes viruses can apparently hide in nerve cells for decades and reappear to cause all sorts of lesions.

We all hope that achieving HCV undetectability in the blood (SVR) also means that it no longer exists in the liver and in the rest of the body. But this virus has only been studied for 22 years, and the current chemical treatments for even less time.

People who achieve SVR need to be vigilant. And those who have had the infection for many years without major symptoms need to not fall into complacency, believing that it will be so always.

We need to be objective and a little scientific. After all, we are part of a huge experiment going on in nature between the human species and the hepatitis C virus. Who will win?

Mike
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Thank you for your excellent post.  I totally understand what you are saying.  My husband experienced this when he went on triple treatment. He lasted only 5 weeks because he became very anemic and decompensated. Yet the virus remained "unquantifiable" for 8 months until his liver transplant. We were warned that the virus WOULD return after transplant  (not "might") and of course, it returned, much more virulent than before. He now has cirrhosis of the new liver.

From what I'm reading, these new drugs work differently in that they prevent the virus from replicating.  Once treatment ends, for some, the virus returns but for most, it remains undetected.  So even if some of the virus may still be in the body hiding,  the patient has a much better quality of life going forward.
No one can really say for how long. BUT, on the other hand, it may never replicate again.

I believe that anyone having gone through this Hep C experience,  even after achieving SVR, will nevertheless forever remain vigilant of this old nemesis.
God willing, they will never meet up again.

Thank you again for your post. Knowledge is power for everyone.
Nan

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475555 tn?1469307939
Hi, Nan. Thanks for your kind post. Terribly sorry to hear about your husband's misfortunes.

I wonder if your husband's HCV infection increased after transplant because of increased virulence of the virus, or because of the immunosuppression required by the transplant?

Would he be a good candidate for the Phase IV trials of the new DAAs? If they can cure his infection now, after transplant and reinfection, that would be kudos for the new drugs. Might be worth looking into.

Mike
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When I say healthy lifestyle I mean no alcohol or drugs that cause the immune system to work harder.  Many people with Hep C just can not stop the alcohol and then wonder why they are taken down so rapidly.  Actually, I was told not to take medications foreign to the body, ( even antibiotics or an Aspirin) unless absolutely necessary.  This causes the body to work harder to fight the virus. Perhaps I was told this because, for me antibiotic cause me to acquire cytomegalo virus.  Explained to me that my blood became confused, not only destroying the virus but was destroying my good red blood cells. The minute a foreign substance enters the body your cells begin to fight.  The medications caused the confusion.  I became very low on red cells, my skin paste white. Even a sunburn would not show. This was years ago when I was at my most ill point.  When Scripps took me off all medication, my blood improved within two weeks and later I became better and better with each year to living normal. So, Bali05, you see I was speaking of healthy lifestyle as No harmful substances consumed. I have seen several people with Hepatitis C that refuse to stop partying or just drinking alcohol until they are jaundice.  And also I HAVE NEVER BEEN JAUNDICE through all my trials with this Hep C.  
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979080 tn?1323437239
Once you are cured of HCV infection there is no need to be vigilant or scientific ect..... The virus is considered eradicated.

You should go back to a normal healthy life with normal routine check ups. A prudent thing to do is to include an ultrasound with your normal check ups because of possibly still increased HCC risk. An ultrasound
is a very easy non-invasive procedure and the chance of cure from
HCC when caught early is just so much better.

That`s it. You are cured !

What treatment is concerned ,yes, you need to be very vigilant in terms
of taking your meds on time , right dosages and run the most sensitive
PCRs you can get your hands on and run them at the critical times during
your tx. Unquantifiable is not Undetectable.

It is amazing how far we have come in the last few years. When I first
signed on to this forum the cure rates for Geno 1/4 were still  around
50% at best and that only with many many months of PegINF/RBV.

b


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You inferred that you understand that the virus, irregardless of how pure ones' lifestyle is, can and will progress to ESLD for many. This is not disputable, but is also not predictable. Some folks are lucky (consider yourself lucky - I hope your luck continues). Some people live a lifetime with no ill effects, and some progress to ESLD, some clear the virus with treatment and some don't (hopefully that is changing-it seems so),

No one doubts or disputes that a pure and healthy lifestyle is essential to not aggravate whatever the virus, on its own, will do.
Please do not use accusatory language (illustrated by all CAPITALS) that infers that those who have not been as lucky as you may not have not been living a healthy lifestyle. Its insulting and ignorant.

Many of us are choosing to live a healthy lifestyle AND seek treatment to erradicate the virus. Its a wonderful thing to have choices.

Good Luck. Joanne.
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Your post has been hijacked (how did that happen? Grin). I will now slither back into the shadows again. Joanne.
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Nursehepc..."Your post has been hijacked (how did that happen? Grin)."

That's OK, the thread is 5 years old...:). Besides your post was great. Suzy all I will say is I hope Hep c doesn't end up biting you in the backside like it has so many of us. Trust me the CURE is much better then what can be the end results... Good luck
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Thanks so much  for your suggestion. My husband unfortunately has another serious complication that the pathologist says is also responsible for his new cirrhosis. He has extensive bilary tree damage  caused by a hepatic artery blockage found  two months post transplant. Because of this, I doubt he would be a good candidate for this trial. He has been through hell so he just wants to stick with this treatment recommended by his doctor.

We are both looking forward to the day we hear he too has reached SVR.
But I promise when we do, we will remain vigilant!  Everything he has been through these last three years won't let us be anything else.

Nan
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475555 tn?1469307939
No problem about the hijacking. I'm happy that an old thread turned out to be useful again. I think we all learned something here.

Regarding Bali05's post, that's a psychologically comfortable position to take, and trusting the MDs and labs implicitly the way you seem to do may give you peace of mind, but telling people not to be vigilant or scientific or objective isn't such a good thing to do, is it?

Nobody knows yet what the full extent of the consequences of infection are, and won't for many years? And how can you have such total faith in what the drug companies say, when they are in competition for cure rates?

Total reliance on a 24-week post-Tx blood PCR is just a pleasant illusion, in my opinion. It suits everyone (MDs, drug companies, insurance companies, etc.) except us.

Best to rely on one's own vigilance, don't you think?. I don't believe in magic bullets, myself. I hope I'm wrong, but. . .

Mike
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475555 tn?1469307939
Have his MDs said that a 12-week course of the new DDAs w/o IFN is contraindicated for his present treatment?

Mike
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"Total reliance on a 24-week post-Tx blood PCR is just a pleasant illusion, in my opinion. It suits everyone (MDs, drug companies, insurance companies, etc.) except us."

Studies have shown way more follow up then just 24 weeks. As posted below..."and showed that serum HCV RNA remained undetectable in 1300 samples, indicating that none had a relapse with up to 18 years of followup ." to me 18 years is a pretty solid track record.

One of these studies followed 344 patients for a median duration of 3.3 years (range, 0.5 to 18 years) after completion of interferon-based therapy with an SVR, and showed that serum HCV RNA remained undetectable in 1300 samples, indicating that none had a relapse with up to 18 years of followup . It is unclear if late detection of serum HCV RNA after an SVR in a small number of patients represents true relapse, especially if the detection occurs only once or is intermittent and with use of a very sensitive assay. Although additional followup studies may provide further clarification of this distinction, an SVR appears for now to be durable and an accurate reflection of a cure.

http://hepatitiscnewdrugs.blogspot.com/2010/10/hepatitis-c-treatment-long-term-effects.html
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Good point I was working on a similar reply last night

Sustained virological response: a milestone in the treatment of chronic hepatitis C.
abstract(Excerpts)
AIM:To evaluate the long-term eradication of hepatitis C virus (HCV) infection and liver-related complications in chronically infected patients that have achieved sustained virological response.
METHODS:One hundred and fifty subjects with chronic hepatitis C (CHC) or cirrhosis and sustained virological response (SVR) between the years of 1989 and 2008
SVR was achieved by interferon-based therapy, both conventional and pegylated, with and without ribavirin treatment
RESULTS:The median follow-up was 8.6 years (range 2-19.9 years). HCV RNA remained undetectable in all patients, even in patients who eventually developed liver-related complications, indicating no risk of HCV recurrence.
CONCLUSION:Patients with CHC and SVR show an excellent prognosis with no risk of recurrence and a very low rate of mortality. Our data indicate that virus-eradication following interferon treatment can last up to 20 years
http://www.ncbi.nlm.nih.gov/pubmed/23687416

20 years so far is pretty damn good especially for those of us over 60 years old.
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979080 tn?1323437239
"Total reliance on a 24-week post-Tx blood PCR is just a pleasant illusion, in my opinion. It suits everyone (MDs, drug companies, insurance companies, etc.) except us."

I could have said something like that about 5 years ago ....lol.

Wishing you nothing but a smooth and successful tx so you can finally get cured of this horrible disease.

There are a lot more options than 5 years ago too.


Cheers
b
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475555 tn?1469307939
I was unaware of that information. Thank you very much for bringing it to my attention.

M.
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475555 tn?1469307939
It's been a while. I'm glad to see you're still around in the forum. Old friends are the best friends.

I haven't forgotten your great line: There is no such thing as a healthy patient you only simply have not been examined enough.

M.
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Hi Mike there is a new drug called Harvoni (by Gilead) that cures Hep C from 8 to 12 weeks.
All the best wishes to you and all in this forum!
Meg
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