help

I have no idea what to do. I got a phone call from my Dr. two days ago after going in for a UTI. The Dr. thought my urine was cloudy and I had high sugars and proteins so he had blood work done. He called and told me I had tested positive for  hep c. I am a former IV drug user but haven't used in nearly four years. I' m 34 years old and I' m just plain scared. Any advice would be greatly appreciated.

[copyman]

You need to see a Hepatologist who will order additional tests to confirm active virus. You will definitely need a PCR test to see if you actually have a viral load. This will confirm if you have HCV or just the antibodies. 20% of all people who are exposed to HCV are able to fight off the virus but will always have the antibodies. Most people have the virus for 20-30 years before finding out.
Hopefully you are one of the 20% with just the antibodies.
Best of luck

[racky2012]

Hi

i am not a pro or a doctor just someone with hep c and i dont really give advice but i do try to help with my support just like you we were all scared i was sooooo confused and was walking around trying to make sense of this all but since i came to this site i must say everyone here will always be very helpful and they know what they are talking about but please try not to be scared you can drive yourself nuts just focus on getting some treatment and and getting well

i did start my treatment and am now almost done i went undetectable at 4 weeks i am now on week 15 of 24 and in the home stretch now you can do this

Good luck to you racky

[ceanothus]

Good advice above! I just want to add that once you see a hepatologist they will do lots of tests and if you are found to have an active infection he will most likely order a liver biopsy as well. The biopsy is the best way to determine how much the virus has damaged your liver. Damage is rated on a fibrosis scale of 0-4, with 0 being no damage, and 4 being cirrhosis. The damage is a slow process with this virus, and rarely reaches cirrhosis sooner than 20 years, and sometimes never does.  You are young and probably haven't had the virus for very long so you will probably still have a reasonably healthy liver. If so, then you will have plenty of time to consider your next move. Current Hepatitis C treatments are pretty effective but very difficult to take because of side effects. If your liver is still healthy you will have the luxury of being able, if you wish, to wait a few years for treatment. Drugs currently being tested promise very high success rates with very few side effects. If you have to have Hepatitis C, at least you are lucky to have it now, when the cure rate is finally getting to a very high level. Small comfort, I know, but way better than when I acquired it in 1984. After two previous failed treatments, and progression to cirrhosis, I think I've finally beat it with my recent treatment!

[GoldenSummer]

You are not alone. Let me repeat, YOU ARE NOT ALONE!! I was diagnosed with Hep C not even a month ago. I was shocked, scared, and was so filled with anxiety I was could barely breathe. I crawled into bed and slept for 12 hours, I was in utter disbelief and went through every possible emotion and scenario of my life to try to figure out how I was infected. My primary care doctor referred me to a GI doctor at Duke and he has a specialty in hepatology--his name is Dr. Muir if you live in the area--I CRIED my entire first visit and he was the most understanding and nicest man--he really helped me a lot just by telling me that Hep C is not something I did to myself, rather this is something which has happened TO me. While I don't fully understand why that sentence helped, it did. I share it with you in hopes that it helps you too).

It turns out my viral load is in the millions (in the mid-four millions to be more accurate) and based on my history Dr. Muir believes I was infected at birth when I received two blood transfusions (I was an RH baby). He performed a Genotyping test (I am Type 2) which helps with treatment decisions, as well as an IL28 (which indicates if a person's body is receptive to  the drug Interferon, which is part of the current standard of treatment (SOC). I have had a CT scan of my liver (to assess if there are tumors--there are none) as well as some blood tests to see if I had fibrosis and necroinflamation. Those tests just came back today and I am bodering "moderate". which I guess is to be expected given how long I've has the disease (47 years). These are all tests you can expect to have in the near future when you go to a specialist. They are NOT painful. Just blood draws.

I can only speak for myself, but I took this diagnosis very hard. I was worried and scared. I decided to deal with it the following way: I am eating super healthy (mostly organic) I have not had a single drop of alcohol in weeks, I am taking Milk Thistle and Dandelion Root and I started doing a LOT of research. There are some awesome possibilities of a CURE in the next few years which is supported by recent clinical trials-- (go to clinicaltrials.gov if you are interested in participating in a clinical trial to get access to some of these drugs being research ) and also Google "Hep C Phase 3 results" and recent information on SUCCESSES of new drugs will pop up--all which look VERY promising.

I have decided to do the "watchful waiting". I do not want current treatment b/c of the potential of serious side effects. The drugs currently being investigated in clinical trials are LOOKING VERY PROMISING and they will be available to the public in 2014/2015 should they get approved by FDA. The Hep C community really believes these treatments may lead to a CURE. So I choose to be optimistic. You will also find out through research that we are on the verse of a Hep C epidemic, so again...YOU ARE NOT ALONE!

Please know you have SUPPORT. I will share whatever I can about my journey and hope that it helps you with yours.

[Dannyboi7]

I'm a quadriplegic and UTIs is pretty much  a  common occurrence with us.Taking an antibiotic called CIPRO will cleared that up for you.And it won't affect your Hep C in any way unless you have allergies towards antbiotics.For anyone while treating for the Hep C a UTI is not uncommon and CIPRO doesn't affect the outcome of treatment.Personally over the years I've come to the point where I let my immune system fight off my UTIs at first it was tough but now over time my immune system gets rid if it quickly.Drinks lots of water,2000 mg of vitamin C a day,tons  of cranberry juice.

[brendad72]

My labs tested positive for Hep.C i just found out three days ago..I am sooo confused,pissed off,and depression is creeping up quickly.I dont know when i got it.Ive never done drugs, I dropped about 20 pds. withen a few months in 2009 and they tested me then for it and it was neg. sense i have struggled to put back on the weight with lil or no weight gain. Ive had bouts with body aches,joint pain,head aches even tingling in feet and hands and abdominal pains from time to time, and the Drs has tested me for everything including auto immune diseases,seliac disease,chrones,ect. all neg. then finally in some new bloodwork i tested pos. for HCV, ive prob. had this the whole time. Now im wandering whats the next step? they tested my liver functions and i got the call today that the tests came back fine.So whats next?

[racky2012]

Please just try to calm down i know its not easy i was freaking out saying the doctors didnt know what the hell they were talking about then going through my entire life trying to figure out how i got this but i never found the answers you can go over and over your whole life but even if you do find out how you got this it really dont matter what does matter is getting the treatment you need to clear the hep c trust me i never in a million years thought i would be sitting here with hep c but i am and i got myself together and dove in and got my treatment started and bingo undetectable at week 4 i dont know what type you are or what kind of doctor your seeing but someone that knows much more then me will come along to help you with the medical part i dont want to give you any wrong information

Good luck and try to keep it together it will be ok

[Advocate1955]

Caher78 and Brendad72, I know it's scary to find out that you have tested positive for Hep C antibodies.  My husband was in the same situation back in 2007, and we were both scared when those results come back.  As others above have said, the antibodies test lets you know whether or not you were exposed at one time to the Hep C virus and whether or not your body fought it off on its own.  If you were exposed and your body fought it off, you will test positive for Hep C antibodies, but you do not have a chronic Hep C infection (a viral load).  If you were exposed, but your body did not fight it off, you will test positive for Hep C antibodies, and you have a chronic Hep C infection (a viral load).  It sounds as though for both of you the next step will be for your doctor to refer you to a Gastroenterologist or a Hepatologist experienced in treating Hep C.  That specialist will do some further testing, called a PCR test, which is a blood test to check for a Hep C viral load, to see if you have Hep C virus in your blood stream.  If you do, then you have a chronic Hep C infection, and your specialist will guide you through many other tests to determine your current status (what genotype of Hep C virus, the quantity of the viral load, checking for presence of other possible co infections such as Hep A, Hep B, or HIV, scanning your liver to look at it's structure, and biopsying your liver to more precisely determine whether or not you have any liver damage).  All of this may take several months, so your job right now is to calm down, read on this forum, look at websites about Hep C, learn more information so that you won't feel so overwhelmed at your next doctor's appointment, write down all of your questions for your doc, and start an expanding file folder where you can keep all of your reports and test results handy.  Ask us any questions.  There are many people on this forum who felt exactly as you do right now and can help guide you through the steps.  Take care.
By the way, Brendad72, Hep C is transmitted by blood to blood contact, and IV drugs is not the only form of transmission.  Other forms of transmission include piercings, tatoos, transfusions, and any other contact of one individual's blood with another individual's blood (e.g. health care, first aid, a physical altercation, etc.).  There are many possible means of transmission.
Advocate1955

[heart_in_the_keyes]

Don't be afraid...was diagnoised with "depression" and overwork stress by my family doctor ... I took all sorts of meds she prescribed until one day a pharmacist who had filled my scripts for years wouldnt fill my script after I told him I thought the one medication she had given me was suppose to energize me and I was sleeping on days off 16-18 hours straight. He called the doctors office & went that day to her associate who was shocked she had never done a blood panel on me considering I was working as a EMT in an ER. It came back Hep C.  I had been innoculated against A/B so I was shocked.  They sent me to a Gastroenterologist who after examining me and doing more tests came in and gave me a dvd on how you can just go to sleep with Hep C and not wake up...still have tape...who came in with tears coming down his face and told me that I had maybe 30 days to get all my affairs in order due to my high viral load.  I told him that dying wasn't an option and to get me a doctor who had options...so I was referred to a Hepatologist who was wonderful and has since gone into research re the Hep C but he said, "you have it, don't waste your time on trying to figure out how you got, you just did.  Focus on going forward and getting better."  I went on 3 different treatment regimens that my body had difficulty staying on.  My viral load was high, then low... My hepatologist left the state to do more research, I was referred to the liver specialist who I go to now.  I missed an appointment with him and saw one of his associates who had a frontal instead of side liver biospy done and told me I was fine...then a year later for annual blood panel saw my doctor and he freaked out that all my levels were extremely high, that I was told my liver was like a baby's liver, and had been taken off all meds.  His associate is no longer with the hospital.  He then started seeing me every 3 months...that was 2 years ago. He had prescribed tx for me but took me off of it because of reports re the treatment having adverse effects on decompensated liver patients.  I am now ESLD stage 4 getting ready to go on transplant list.  Due to the decompensation of my liver even if they had a magic pill today that you only had to take one of to rid your body of the Hep C, I would still have to have a new liver.  The advice given on this website is good.  Everyone that has been treated or in treatment for awhile will tell you to get a hepatologist and I agree.  GP's and even gastro docs will just have to refer you.  GP's just don't have the expertise to handle this disease.  I do not have one now. I do have my hepatologist/liver surgeon and an infectious disease internist who I do not have to educate on Hep C every time I see him.  He works well with my doctor.  I'll never know how I was infected...people born between 1945-65 have a high occurrence of Hep C. I worked in an ER. I traveled 1/3 of the world. I have a tattoo & ear piercings. Have had a couple of transfusions. So who knows.  Don't waste your energy on being mad...focus on getting good doctors and do what they say.  Also don't be afraid to question what they are doing.,after all, it's your body and life.

[brendad72]

Thank U for your comments and re assurance i know theres a long road to travel ahead. I have a Dr. appt. in the morning with my primary care phys. and i guess ill find out more then. And i appreciate reading all your posts and the knowledge all of you guys have. Its nice to know im not alone.

[casher78]

Hey everyone. Thank you all so much for your advice and kind words of encouragement. I talked to a GI doc about a week ago. I am positive. My viral load is at 49,000. I only talked to the doc on the phone to set up an appointment so I really have no idea what's going on or what that even means other than its the amount of virus in a certain amount of blood. I've spent the past few days in some kind of panic attack that comes and goes. I've cried, punched steering wheels, snapped at co-workers, smoked 8 million cigarettes, cried some more, stared into space, and tried to act like I was just peachy in front of my wife and daughter. I don't want them to know that I'm scared. I feel incredibly alone. I'm driving myself nuts. I didn't check back at this site for awhile because I honestly didn't expect a response, let alone a community of support. Thank you all very much. I guess the internet is good for something after all.

[1swimmer]

Hi there. When I was first diagnosed with hep c, I went crazy too. At work it would be on my mind and I couldn't tell anyone. The disease is a slow progressing disease so try to slow down on all the worry. As you become more educated, and hear about your options and meet others here, it will start to be less scary.
There will be blood tests to determine your genotype. Some genotypes are easier to cure and there are new drugs out to battle the toughest one. Also there are many trials going on for better meds. People with the least amount or no liver fibrosis have the option of waiting for the easier, newer treatments.
You have time on your side, considering your age. The disease progresses faster with older ones.  
Obviously, and most importantly, you'll need to find out the health of the liver. Liver enzymes can be normal and a person can still have a lot of damage. Viral loads do not tell you the stage of liver damage.
Many folks get the liver biopsy; I did the fibrosure blood test.
I'm probably repeating what others have already offered. Just remember you are not alone. One foot I front of the other. It gets easier as you get clearer about your status.
Chin up and keep breathing,
C

[ceanothus]

Hang in there, if you got it from IV drug use that was only a few years ago, then you probably will have little or no liver damage yet, and in that case you will only need to have it monitored by a hepatologist once or twice per year until you choose the best time to treat it. The monitoring visits include blood tests that look at CBC's, metabolic panels and alpha-fetoprotein (an indicator for liver cancer), and they will do an abdominal ultrasound as well as a physical exam. It's all very easy and usually completely uneventful in the early stages of the disease – which in the case of HCV is usually the first 20-plus years. Treatments should be available in a couple of years that will cure it with only 12-24 weeks of meds that also don't have nearly as many side effects as what is currently in use. The virus is horrible to have, but at least you are in relatively good luck with your timing.

I do think you should tell your wife, although it might be smart to educate yourself more first so you can answer questions about the disease and allay her fears. BTW, there is very close to zero chance that they would ever become infected from you. Studies have shown that intra-familial transmission is extremely rare. The only precautions you need to take are where your blood is involved. Be extra careful in cleaning up if you cut yourself, especially in making sure no one else cuts themselves with the same implement by trying to help you. Don't share personal grooming tools that could nick you or otherwise cause bleeding, such as nail clippers and toothbrushes. Do continue to enjoy lots of kisses and hugs and don't worry about sex with your wife unless there are cuts present (in which case one would think sex wouldn't feel good anyway). A good place to get reliable info about the disease is at http://www.hcvadvocate.org. Here too of course, but its more organized for straight reading at hcvadvocate, and this site is best for questions and support. Best wishes!

[James10500]

I don't have time to read all the  responses so I apologize if this has been mentioned.

1. Get a liver biopsy to determine the condition of your liver
2. Based on that biopsy, decide when to treat
3. If you are not stage 3,or 4 wait for new drugs

Remember HCV is no ones business but yours if you don't want to tell people.  If you can hang on for the new treatments to be approved chances are you won't even miss one day of work from what folks on those drugs have said.  They will cure you!!  It's a shock at first but trust me that feeling subsides and you learn to live with it.

Good luck!!

[Carlhcv]

I'm not a fan of the wait for treatment theory. The virus affects more than the liver. It causes brain problems and joint and muscle pain and who knows what else. Our bodies are saturated with the virus. It doesn't just hang out in the liver. If you drink, you need to stop now. If you don't have insurance there are ways to get treatment for free! I am paying only a token amount for my treatment. Read everything you can find on the web. Some of the older info is inaccurate but you can sort it out. Call your local Health Department. Call everyone you can. Call "help 4 hep". Call doctors. Get treated! I'm on week for. I was diagnosed 9-2012. Best I can guess is that I got it from a 20 year old tattoo. I've had extensive dental work done so a dirty dental tool is possible. I'm type 1, 4,000,000 viral load which does not mean much. I had an abdominal cat scan which was normal. No biopsy. I would not wait. JMO

[Advocate1955]

I am also not a fan of waiting to treat. Progression of liver damage is not predictable. Mu husband was diagnosed in 2007 with Hep c, fibrosis 1, treated and failed, and then had Cirrhosis (f-4) by 2010. Treated again in 2010 and 2011 and failed. Although liver damage can progress slowly, it can also progress quickly. Make informed decisions.

[casher78]

I have stopped drinking and am working on smoking. I still haven't been to the doctor yet but I have an appointment on Tuesday which cannot come soon enough as I'm seriously starting to freak myself out. I haven't exactly maintained a healthy lifestyle up to this point I'm worried what damage may already have been done. I think I'm starting to have psychosomatic symptoms, liver pain and whatnot. Funny thing is I'm not a hundred percent sure I even know where the hell my liver is. I've been googling far to many things. Someone please tell me to calm down. Did anyone else go through this fear?

[Advocate1955]

Casher, I think everyone goes through this fear. My husband and I did. Try not to dwell on it, you'll be seeing the doc on Tuesday. Make a list of questions and bring in copies of test results if you have them. The liver doesn't have pain nerves, so I think you're OK! Nothing bad is going to happen between now and Tuesday, this is an anxiety reaction. Go for a walk, exercise, listen to music,or watch a funny movie. Ask questions here and limit your googling! :)

[James10500]

I can only speak from my own experience.  I feel worse than I did before I treated and I was done two years ago.  Talk about joint pain, can't even walk down stairs without going one step at a time.  Mystery pain in joints unrelated to any injury. Brain fog galore, inability to concentrate. Was a morning person now I have my moments.

Cashier stay on top of it for sure, advocates husband was not the norm but certainly possible.  One thing she points out is all the times treatment has failed him.  Another great reason to do the new treatment.  Perhaps check out a trial.  Glad you stopped drinking.

[Advocate1955]

James10500,
In my husband's case, there are currently no clinical trials for people with HCV and Cirrhosis.  For my husband, the question is whether or not his liver will stay compensated while he waits for either a clinical trial or the new meds to be approved.  Everyone has the personal choice whether to wait or treat now.  My husband's personal choice has been to treat when there was a treatment option so as to hopefully avoid being in the situation he's in right now (Cirrhosis) or worse (decompensated Cirrhosis).  That is the last place anyone with HCV wants to be in, as by that point it is too late to treat HCV.  You say that my husband treating three times and failing three times is "another great reason to do the new treatment", but for each person, it depends on whether or not they have the luxury of waiting for the new treatment, and how much of a gamble they are willing to take on how slowly or quickly their fibrosis will progress.
Advocate1955

[racky2012]

Yes please calm down we all and i mean all of us were in shock very very scared mad feeling like how and where did i get this upset i even felt very dirty and almost like i was not normal this is all very normal for you to feel this way

i am a different person then the one i was when i first found out i had HCV i found out 6 months ago your family will still love you and its not the end of the world you have to focus you plan of action witch is getting rid of this virus

When i was at my doctor for the first time my Hepatologist that is he told my not to be upset he said you have a virus and nothing more its a virus that we can cure when i left his office i felt so much better like a big rock was lifted away

so please just focus on getting treatment and ridding your body of the virus

here i sit undetectable at week 20 of 24 i have 4 weeks left and poof its gone well its not all that easy but you can get rid of it so relax

[James10500]

Just for the record I treated immediately or as soon as I could but there were no trouble free drugs on the horizon.  Information on the net and helping someone through HCV is wonderful. But havering it, treating it, and beating it is immeasurable more intense.

[Advocate1955]

James10500, I'm not sure I understand what you're saying.  In your first post above, you are advising people to wait for the newer treatments because of how difficult the side effects of current treatments are as well as post treatment effects that you have experienced.  In your second post above, you are saying that it's great to have information on the internet and/or help people with advice over the internet, but that having/treating/beating HCV is more intense.  Are you saying that because I am a spouse of a person with HCV that I should not be giving advice to people as to whether or not to treat?  If that's what you're saying, please just say that directly either here on this thread, in a note, or in a private message so that I can respond.  Indirect communication is difficult to interpret.  

Casher78, my point to you and to others who have just learned that they have Hep C is to please learn all you can, find a good hepatologist, and make an informed decision about treatment.  Some people who wait for a new treatment are fortunate and don't have more liver damage while waiting.  Some people who wait for a new treatment are unfortunate and have more liver damage while waiting.  There is no way to predict how one's progression of liver damage will go.  Treating now or waiting is a personal decision and a personal risk that each individual should make, with knowledge, and with the advice of a hepatologist who is experienced in treating Hep C.  Please don't wait to treat until your liver becomes decompensated, your liver begins to fail, or you develop liver cancer, as by then it is too late to treat your Hep C.
Advocate1955

[can-do-man]

"3. If you are not stage 3,or 4 wait for new drugs"

So what your saying is if your stage 2 then there is no problem waiting and maybe going into stage 3 or 4? Maybe you care to share just how late stage people are doing under these "new" meds? The results from a few of them suggest maybe that isn't such a great ideal... Waiting that is.

Myself waiting when the odds are very good for people in a earlier stage now just might prove to backfire on some of these folks.

[Advocate1955]

I agree with you can-do. No one knows when f-2 will transition to f-3, making treatment more difficult and perhaps decreasing success rates.
advocate1955

[willbb]

When to treat your HCV is always a personal desicion ,one that should be made depending on many factors ,not the least of which "what genotype "  and how advanced or not your liver damage (fibrosis) may be and always with the advice of a knowlegable(with HCV) doctor.

A Gastroenterologist or a Hepatologist will perform the needed tests to ascertain this and then you can  discuss with this specialist the  plan of action from there.

If one has "no " or very mild" liver damage it may be  an option he/she would suggest to wait until different meds are avail,however as mentioned above if  there is moderate to severe damage already, then consideration to treat now would probably be advised given the approx 75 -80 % success rate of the current therapy

Best to you and welcome...

Will

[Advocate1955]

James10500, I don't appreciate being called an idiot and I don't appreciate swearing.  Just to re-cap, in your opinion a person who is f-1, f-2, or f-3 should wait to treat.  And according to your stated opinion above, "If you can hang on for the new treatments to be approved chances are you won't even miss one day of work from what folks on those drugs have said."  Additionally, in your opinion, I don't know anything about HCV because I don't have HCV.

In my honest opinion, f-1's and f-2's can probably wait for the new medications, but need to be aware that many of the clinical trials are not yet completed, many results are not yet reported, and the companies have not yet applied for approval.  In my opinion, f-3's should be very cautious about making the decision to wait for new medications.  This decision should be made with a lot of information and advice from their doctor.  The transition from f-3 to f-4 is not necessarily a linear transition and as scarring moves from moderate to severe, the architecture of the liver changes, causing more damage, affecting liver function, and making treatment more difficult (side effects are more difficult), and making SVR more difficult to attain.

Advocate1955

[James10500]

I did NOT say f-3. I offered advice from my experience.

Sorry I called you an idiot, but there is no need to scare someone like that!  We have no idea what condition his liver is in.

[Advocate1955]

And there is no reason not to inform people of the very real risk of progression of fibrosis to cirrhosis.
Advocate1955

[BoceprevirGal]

   Well, I think it is a good idea not to send a person recently diagnosed with Hep  C,into a panic, etc.  Although, in order for me to take action, I did need to be extremely concerned, so a "semi-panic" does sometimes get us to make and keep those very important appts, the most important one for diagnosis,in my personal opinion,is the Liver Biopsy, where a piece of the liver can actually be analyzed, rather then the guess work done, with ultra-sounds, and that Fibro-Sure test that I had done, which gave me a false positive, for cirrhosis. We dont have many Fibro-Scan machines here in the U.S. yet, because I hear they are very expensive.
   That being said, I wanted to let the new posters now that Hep C does tend to move fairly slowly, if alcohol is avoided. As long as action is being taken, you could give yourself a 3 month time frame, to get the biopsy done, and then make an informed decision. I think everyone on here can agree that npot much difference in the Staging will go on, during that 3 month window.
   My personal story is I found out I had Heo C when I was 30 yrs old. I went on to have two more children, and then had my first biopsy at age 49 yrs, because I thought my hot-flashes were from my Hep C.  My biopspy showed me to be at a Stage 2, and I treated successfully, with the Triple Trreatment, using Victrelis, it was a 28 week treatment, and I am now cured.
   I still have the hot-flashes, and I do have some increased joint pain in my knees, but I was already having the joint pain in my sternum/clavicle and knees, before the treatment also.
    It is more safe, not to have the Interferon in the(treatment) picture. Hopefully the new meds (Interferon free) will be approved soon. The good news is, people are being cured of their Hep C at a rapid rate these days. It is not a hopeless situation at all, only a difficult one to have to digest. Education is the key, and should ease alot of the worry/anxiety

[James10500]

Thanks Bocep a great post. And congrats it is great to be HCV free!!  

[heart_in_the_keyes]

Agree with all who have said not to panic.  But don't put it on a shelf and ignore it either. As stated, education and information are the keys.

Just wanted to point out though that I personally went from Stage 2 to Stage 4 in two very quick years...it happened so fast that my gastro/hepatologist actually said, "what in the hell have you been doing to yourself". He is such a gracious, quiet man I knew he was upset.

Nothing but working too much...too much stress at work...taking way too many NASID's for what I would eventually find out were work related ulcers. So they probably weren't helping my liver either...but I.wasn't drinking,  except for a sip of dark red wine on a holiday...but I have always been lucky that I do not really like the taste of alcohol so I never drink all of it....so maybe a half a dozen drinks in one year...wasn't doing drugs...do not smoke.....but I was eating a lot of red meat.  You are probably thinking, really? but  the work group I worked with were always going out for steaks or hamburgers....the best steak house became a quest. Didn't help that the best greasy spoon hamburger joint was right next door.... I'm thinking it's protein...how could that hurt....vaguely I remembered someone telling me to cut out the red meat.... So other than an unhealthy food regime, nothing in my life had changed in two years... I don't know how I got off my regular healthy eating routine....addiction...it is an odd thing...comes in all sorts of forms.

So in 2 years I went from stage 2 to 4, from low viral load to high...so each individual is different. Since I was a non-responder on 3 different trials that all included interferon there was nothing they could suggest for me and when I saw my doctor again 2 years ago when he saw the changes and was so much worse he had difficulty getting me cleared for any trials.  

What could affect me, might not affect someone else.  So just be in contact with your doctor and have routine testing and follow their guidelines.  Educate yourself and listen to your body and treat it like the life support machine it is.  Worry and anxiety will not help.  Personally, I would rather do something early than later and possibly end up in the boat I am in now that now I am on a pre-transplant list going through all the testing to see if I can qualify to get a new liver.

Old adages come to mind..."rather be safe than sorry"....."two birds in the hand are better than one in the bush"....have a hundred of them but the point being, inform yourself, don't be afraid to ask the doctors questions, and do what is right for you.  Good luck.

[can-do-man]

Wow James maybe before you come on here calling someone an Idiot you should show that you are keeping informed. As all your doing is relaying what some say here instead of what the experts are saying........ BTW there has been nothing yet even submitted for approval to the FDA but so many here keep saying they will be here in a year......And you say "trouble free"? Heres somethings to get you up to speed.

http://www.medhelp.org/posts/Hepatitis-C/Setbacks-in-HCV-Drug-Development-Highlight-Uncertainties-in-Treat-or-Wait-Decisions/show/1843062#post_8516618

http://www.medhelp.org/posts/Hepatitis-C/Latest-Gilead-Geno-2-and-3-results/show/1902498#post_8862778

[pooh55811]

I am sorry to see that you do have Hepatitis C. However, it is not the end of the world. All of us were very frightened and anxious when we first received the diagnosis so your reactions are normal. The more informed and educated (about Hep C) that you become, the less anxious you will feel.

Many people above (Advocate, Can-do-man, Ceanothus, heart-in-the-keys, and others) have offered excellent information and advice. I would just like to add a few things from my perspective.

Hepatitis C is a virus, a serious virus, one that can cause a lot of damage if not treated. But there is treatment available and the current treatments are really quite successful depending on the type of Hepatitis C that you have and the liver fibrosis stage.

As others have pointed out, you will need to find out your Genotype, your liver fibrosis stage, and the results of other tests. Then you will be able to make an informed decision concerning when is the best time to treat.

Personally, I am NOT a fan of waiting to treat. Liver fibrosis is not linear in its progression. As several others have stated above, Hep C can progress slowly or it can progress rapidly. No one can predict how rapidly it is going to progress. In addition, a liver biopsy may show Stage 1 liver fibrosis or Stage 2 liver fibrosis, but those liver samples are small and are not representative of the entire liver. Those Stage 1 or Stage 2 biopsy results may be Stage 2 or Stage 3 (respectively) in other areas of the liver. So one has to keep in mind that one could be a stage further along than the liver biopsy shows. In addition, those with higher fibrosis stages do not do as well on treatment as those with lower fibrosis stages (cure rate is lower and complications/side effects can be worse). I was diagnosed with Hep C in July 2011. I was Stage 2. I started treatment in Sept. 2011. I finished treatment in Aug. 2012. I am now cured having attained SVR last week (sustained viral response/cure). If I had it to do again, I would do exactly the same thing, treat ASAP (no matter what the Stage, even if it was 0 or 1).

In addition to the damage that the virus is causing to the liver, the virus is also everywhere else in out bodies too. Hepatitis C can and does cause a myriad of extrahepatic manifestations (medical problems outside of the liver) so, even if one has Stage 1 or 2 liver fibrosis, one could have a lot of extrahepatic manifestations. This is something to consider when it comes to deciding on when to treat. (As a side note, I had Stage 2 liver fibrosis when diagnosed in 2011 but I have been having extrahepatic manifestations for decades).

The other thing to consider is that no one knows when the new drugs will be available for the general public. It may be years before the new drugs are available to the general public. In the meantime, those waiting may continue to have progressive liver fibrosis.


Link to extrahepatic manifestations:

https://www.google.com/search?q=extrahepatic+manifestations+of+hepatitis+c&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a


casher78, I think you will find Advocate's posts and advice to be of excellent/superb quality and accuracy, containing a great amount of reliable and helpful information. I say this about her posts in this thread, but also about her posts in general. If you go to her profile page, she has a great deal of information listed in her journals.

[mikesimon]

A 'Killer' of a Reason to Treat Hepatitis C
Feb 15, 2013

Hello. I am Dr. David Johnson, Professor of Medicine and Chief of Gastroenterology at Eastern Virginia Medical School in Norfolk, Virginia.

Hepatitis C and treatment for hepatitis C have been an ongoing issue, and we have never been in a more exciting time for eradication of hepatitis C virus. Unfortunately, many patients with hepatitis C progress to develop cirrhosis. It is estimated that 25% of patients in the United States with hepatitis C have cirrhosis. An estimated backdrop is about 3.5 million patients. By 2040, it is estimated that this percentage will go up to 45% if left untreated. This is a real problem, not only because of the consequences in our medical care for these patients, but because of what we should do for them now. It has never been more exciting to treat these patients, but we are often held back by patients with cirrhosis or fibrosis, and we think that they may not tolerate the treatments as well or that they are too end-stage, that they don't really need to have these treatments.

An exciting article was just published this past month in JAMA.[1] It is a study that looked at patients with cirrhosis or bad fibrosis. All patients had hepatitis C and liver biopsies, which were classified by an Ishak score. The Ishak scores ranged from 4 to 6. What that means is that these patients had significant scarring of their liver and, in fact, most of the patients had cirrhosis; 27% of patients had an Ishak fibrosis score of 4, 19% had a score of 5, and 54% were very cirrhotic with a score of 6, which is the end of the fibrosis score.

All patients had hepatitis C and were entered into an evaluation. From 1990 to 2003, 530 patients were treated at 5 centers around Europe and Canada. They were followed for the endpoint of all-cause mortality. Secondary outcomes were liver-related mortality, liver-related failure, hepatocellular carcinoma, and need for transplant or decompensation. These endpoints were fairly significant. They looked at sustained virologic response (SVR), which was defined as the absence of a virus for 24 weeks after treatment. It would be a sustained treatment effect, and clearance of the virus would be expected to be maintained. The SVR at 24 weeks would be no virus.

The timeline for this study is 1990 to 2003, so many of these people were receiving monotherapy, pegylated interferon treatments, or consensus interferon treatments. A smaller percentage of patients received combination therapy with ribavirin. Only 34% of these people actually had an SVR. Of the patients who had an SVR, the all-cause mortality was 8.9% at 10 years. Of the non-SVR patients, the all-cause mortality was about 27%. The mean follow-up was 8.6 years, so the 10-year mortalities were calculated if they were available and there was a reasonable endpoint. If you put the numbers for mortality together and look at 8.9% vs 27%, the number needed to treat to prevent 1 all-cause mortality is 6.

In my 36 years of being in medicine, I have never seen such a number needed to treat for an endpoint that is as strong as mortality. With pharma trials, we get excited when we have a number needed to treat that is 10-20, a medium range of good news for pharma trials. Here, we are talking about mortality. A number needed to treat of 6 is unheard of. If you look at hepatocellular carcinoma, the number needed to treat here was 5. The number needed to treat for decompensation and liver transplantation was 4. Cause of death, liver failure, was 4. We have never seen this type of number before for the endpoint of mortality.

Interestingly, they also found a cofactor that was a subset risk, which was genotype 3. If you are genotype 3 and not treated, then you are 2 times more likely to have all of these consequences. We do know that genotype 3 tends to be a much more rapidly progressive disease, although genotypes 2 and 3 are easier to treat. If you don't treat them, they tend to more rapidly progress to fibrosis and cirrhosis. They also tend to be more associated with hepatic steatosis, an independent risk factor for hepatocellular carcinoma. For patients who are subset genotype 3, we need to be very germane in pushing this into a new paradigm shift of prevention of death and much less decompensation and all the consequences of cirrhosis. The endpoints here are so strong for all-comers and even more so for genotype 3, that we need to be treating these people.

Very interestingly, there is a parallel story related to coinfected patients. A paper was published earlier in 2012 regarding HIV and coinfection with hepatitis C.[2] The study had 19 patients who had fibrosis or advanced fibrosis. The numbers were not quite as implicit as the study we just talked about, in which all the patients had fibrosis or advanced cirrhosis. These patients had coinfection, and the number needed to treat was very much in parallel with what we talked about for hepatitis C infection alone. In fact, no HIV/HCV patients who had fibrosis on their biopsies had any related mortality once they had an SVR.

Where are we headed with this? I think we are headed to a discussion with patients with hepatitis C and fibrosis or cirrhosis. If you have ever been hesitant to treat these people, get over it. These patients need to be aware of an endpoint that is so strong with mortality, that they need to be treated. I am not talking about waiting for new therapies. They need to be treated now. With an endpoint of mortality and a number needed to treat that is 4-6 for mortality, liver mortality, and hepatocellular carcinoma -- if you can't convince them at that point, it's never going to happen. Don't sit back on these patients. We have never seen a number needed to treat with an endpoint of mortality that is this low. Oncologic interventionalists would be ecstatic if they could have a cancer regimen that would prevent cancer or treat cancer with this type of number needed to treat.

Get off the dime. Look hard at your cirrhotic and fibrotic patients. Don't wait for new therapies. In the era of triple therapy with boceprevir, telaprevir, and some of the new protease inhibitors on the short-term horizon, we have an absolute indication and an obligation to treat our hepatitis C patients with fibrosis and cirrhosis, in particular the hepatitis C patients who are genotype 3.

Look at this article. Think about it. Don't forget the HIV-coinfected patients as well. It gives you an interesting discussion next time you have one of these patients in the clinic. It is an exciting time for hepatitis C. Let's make a real difference. I look forward to our next dialogue in the prevention of cancer. It's your opportunity now to take this back to your patients and apply it. I'm Dr. David Johnson. Thanks for listening.

http://www.medscape.com/viewarticle/779068?src=nl_topic&pa=08SO%2Fi5uwlXXjmjRpUjCY78Bgv3EQGKAFQv8jW%2BA0HOCfuLtkdA6F6cjwpRHJPLl8SIvl8zjYv73GUyW5rsbWA%3D%3D

[pooh55811]

Thanks for that excellent post.

[James10500]

cDM- I said that in regard to her scaring someone without having any info on his true condition.  I appreciate her wanting to support those of us who have had or have HCV. But there is no need to scare someone who is frightened already.

[can-do-man]

Thanks Mike, good info. The statement I copied below this has been known for quite awhile yet few here seem to either know it or they choose to ignore the truth........

"Interestingly, they also found a cofactor that was a subset risk, which was genotype 3. If you are genotype 3 and not treated, then you are 2 times more likely to have all of these consequences. We do know that genotype 3 tends to be a much more rapidly progressive disease, although genotypes 2 and 3 are easier to treat. If you don't treat them, they tend to more rapidly progress to fibrosis and cirrhosis. They also tend to be more associated with hepatic steatosis, an independent risk factor for hepatocellular carcinoma. For patients who are subset genotype 3, we need to be very germane in pushing this into a new paradigm shift of prevention of death and much less decompensation and all the consequences of cirrhosis. The endpoints here are so strong for all-comers and even more so for genotype 3, that we need to be treating these people.

[Idyllic]

Wow sorry you are so scared & freaked. All of us have been there.

The more you learn the less panicked and shamed you will feel.

There are so many misconceptions about Hepatitis C and it seems as if you may have a few. As one recovering from substance abuse it was thing after another in my family for years. Just when things were stable and coming together I tested positive for the antibody.

The Internet wasn't around back then and I read that 20% people clear the virus on their own and I figured that can't be me. Then one day (a few years later) I was reading something I realized I need to have the PCR and Lo I had a VL in the millions.

There was only one treatment back then so the issue of treating was "when" and not "if."

I had a biopsy in 2005 & found out I was stage 1 & treated in 2007.
I did not clear.
I had another biopsy in 2011 was still stage 1
I treated again last year.

So far so good. I have my 24 week SVR labs next month.

I was so certain I contracted the virus when I was using back in the late 80's. The thing is the more I learn and put things together I am not entirely certain when I got infected.

´★¸¸.☆ •*¨*I would schedule a biopsy and share this with my family. Their feelings will mirror yours since you will be the one to educate them.

This is a great thread with a boatload of good info.
Notice the variance in opinions.
Notice the level of expertise in each.

I trust and respect each person who has posted in this thread and have learned so much from them.

We have to be like that since we have ALL learned firsthand just how many people in the medical profession are not experienced and educated about Hepatitis C.

I hate it is like that but the sad reality is Hepatitis C is a disease where you have to learn a lot or you could blindly trust the wrong doctor and make the wrong choice.  I get you are freaked and this is going to take time but don't let that keep you frozen.

I know not much time has lapsed but things are not that bad. You don't have to get healthy and turn a 180 at once. Knowing how far your fibrosis has progressed is a good next step.


Oh btw get vaccinated for Hepatitis A & B next.
Start keeping copies of all your labs too.

Best of luck

I hope you keep posting and let us know what happens♫

[ceanothus]

Thanks to everyone who contributed to this very informational thread. I hope we didn't frighten off our original posters with the demonstrations of our sometimes high levels of emotional involvement. HCV is such a powerful virus that I guess it's only natural that it inspires us to highly charged responses. They get a little scary at times but in my 1.5 years on this forum they always seem to end peaceably. In this case it seems to me that Idyllic's last post caps off the whole thread, encompassing all those strong views and emotions in a peaceful way - soothing but still focused on the power of knowledge. Great informational thread!

[casher78]

I went to the G.I. doc yesterday. He said my liver functions are normal. He ordered ALOT of blood work. I guess this is a long process. He gave me some good info but I'm not so sure I care much for the guys bedside manner. The nurses were all very encouraging and friendly, however. The thing is, I don't want to jump into anything treatment wise without a lot more info. He gave me the rundown. Nausea, depression, "temper tantrums", etc. It sounds pretty terrible but I'm willing to do it to get well, and I've never been one to quit something without seeing it through. Has anyone worked a physically demanding job while going through treatment?

[Advocate1955]

Yes, my husband worked a very physically demanding job throughout all 3 times that he has treated in the past 5 years.  During each of the treatments, he may have taken one or part of a day off due to side effects, but otherwise he was able to push through and not miss any work.  It wasn't easy, but it was do-able.
Best wishes and keep us posted as you get the results of your blood work and other tests back.
Advocate1955

[racky2012]

Thats great news i also had normal liver function we are pretty lucky as far as working full time i guess you will have to see what type you are and ask those who have the same type as you how they went about working on treatment

Hope by now you have had some time to soak this HCV thing in enough to focus on your treatment

[rivll]

I am not going to try to advise you to treat or not to treat.
If your liver is not damaged, it can wait but again that is your choice.

I do want to tell you that from the posts here and the people I have known who have treated, it is extremely difficult for many people to work full time and do this treatment. Not impossible, but be clear it is usually quite difficult unless you have a flexible light weight job..

Good luck and all the best to you.

[keepitsimplesweety]

im in the process of being diagnosed. meaning i knew there was a chance seeing that i was a addict for 8 years , i have 13 tattoos,3 pierceings,and of course ive been to the dentist. well i went to the doc at the begining of the month and was tested for hep c , she called 3 hrs later that it was pos. my doctor wanted blood work to see liver levels . found out today they are elevated 24700 to be exact . i read somewhere that normal is 5-40 so im terrified to say the least . scary process and i dont know whats next

[Advocate1955]

Can you request copies of your labs and post exactly what the say here, so we can help you?

[cheflady]

first well done stopping drinking and drugs second glad you finally went to docs, im pretty sure if you combated the other two you will crack this tx.Yes some of sx not nice first 4 wk of tx after hubby had jab it was like walking on egg shells he to was sick and depressed but they slowly disappeared enough to handle after his body adjusted to drugs.Focus on one day at a time, and everything will fall in place. i wish you good luck

[ceanothus]

Welcome to the forum! We need to get more precise lab results because the desired numbers vary greatly depending on the exact test performed. When you do get your lab results ready to post, can you please make it a brand new post, by using the "post a question" button at the top of the page? This thread is very long and is getting confusing with multiple conversations going on at once. Thanks!