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4726133 tn?1361989773

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.
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1840891 tn?1431547793
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!
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Avatar universal
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
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Avatar universal
Can you request copies of your labs and post exactly what the say here, so we can help you?
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4990311 tn?1362009289
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
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Avatar universal
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.
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3122657 tn?1357432602
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

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Avatar universal
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
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4726133 tn?1361989773
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?
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1840891 tn?1431547793
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!
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766573 tn?1365166466


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♫
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Avatar universal
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.
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1491755 tn?1333201362
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.
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1815939 tn?1377991799
Thanks for that excellent post.
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Avatar universal
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
Helpful - 0
1815939 tn?1377991799
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.
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Avatar universal

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
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Avatar universal
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.
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1491755 tn?1333201362
Thanks Bocep a great post. And congrats it is great to be HCV free!!  
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Avatar universal
   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
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Avatar universal
And there is no reason not to inform people of the very real risk of progression of fibrosis to cirrhosis.
Advocate1955
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1491755 tn?1333201362
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.
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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
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