Hi, I am new to this forum. I was diagnosed over 10 years ago with Hep C. I was drinking and drugging and decided to ignore it. Now I am 16 mos clean and sober and have BiPolar disorder am on prosac, klonopin and lamictal..all low doses. I have recently found a gastro doc that I feel good to work with and will be following up with her in a few weeks. She did discuss possible biopsy? I know one person that has gone through treatment and has recovered well. I now know I can face whatever comes down...However I'm not sure what to expect? Also what are the ramifications of this disease? If I'm not a candidate for drug treatment does that mean a liver transplant? Maybe these are too many questions but I sure would appreciate any feedback..I'll be 65 in December. Thanks
Hey Jude, welcome to the forum and Congratulations on getting clean and sober – that is a huge step towards better health! The biopsy is certainly your next step. It will give the most accurate account of the condition of your liver right now, which is essential info for making decisions about treatment. The great majority of HCV patients today are eligible for one of the drug treatments, but in some cases the doctors may not recommend treating immediately. The current best treatment for genotype 1a is the triple tx, involving weekly interferon injections and daily doses of ribavirin, plus the addition of a new drug, one of two protease inhibitors on the market now. The treatment is either 24 weeks of 48 weeks, depending on your liver condition and on how your body responds to the drugs, and it is usually a difficult treatment with numerous problematic side effects. If your biopsy shows little damage your doctor may advise you to watch and wait until a new set of drugs make it to the market (expected in 3-5 years) that are easier to take. If your biopsy shows moderate damage you will probably want to treat very soon, to avoid letting it progress to cirrhosis. If your biopsy shows cirrhosis is already present then as long as your liver is still compensating well and performing all of its essential functions, you will want to treat ASAP, preferably under the care of a good hepatologist rather than a gastro doctor,, and you will have to treat for 48 weeks as well. If you have decompensatef cirrhosis things get very complicated, and you would have to work with a hepatologist at a liver transplant center for whatever form of treatment they decide is best in your case. At any rate, liver transplants don't come into the picture unless your disease has either progressed to decompensated cirrhosis or you develop liver cancer. Hopefully you can still prevent either of those events. This forum is a fabulous resource for both information and support, so do spend some time reading different things and searching through the archives. It is really important to educate yourself as much as possible in order to make the best decisions and also so you can serve as a safety to catch any errors your medical personnel might make. We see too many of those and few of us on this forum are willing to kick back and trust everything will be done correctly without our checking up.
Aloha and welcome.
Ceanothus has given you some excellent advice. Learn as much as you can and write down all your questions for the doctor to bring to your appointment.
I've put together a list of questions for newbies to ask their doctors which I'll post here for you.
It is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist.
Questions for the doctor:
How experienced are you in dealing with Hep C ?
Do I need a biopsy before treatment?
How often will I be doing labs during treatment?
What is your protocol for dealing with low wbc or rbc?
What about other side effects?
How often will I be seeing you during treatment?
Who do I contact in an emergency ?
Will I be able to have copies of all my labs and tests ?
Will you be available via phone or email to answer my questions ?
If I'm not a candidate for drug treatment does that mean a liver transplant?
Why do you ask this question?
Have you ever had a biopsy? I myself would want a biopsy in order to determine the level of fibrosis you might have. That is one of the more reliable ways to know just what treatments are viable.
Congrats on 16 months clean. I am in recovery myself and I know how far you have come and you have a lot to be proud of right there.
I second the advise in the first two posts. It is important you feel comfortable with the doctor you see and you feel like he knows what he's doing. Be sure to ask the questions OH posted above.
Congratulations on being clean and for 16 months. That is a very positive and beneficial accomplishment.
Just to add to the above excellent posts ...
Finding a good Gastroenterologist or Hepatologist who is knowledgeable and experienced in treating Hepatitis C is extremely important. You don't want to be the doctor's first Hepatitis C patient.
You do not state which Genotype you have. Your Genotype will determine which drugs you take for treatment.
A biopsy is important so that you know the state of your liver. If you have little liver damage, you may be able to wait for the newer drugs. On the other hand, if your damage is significant, you will want to treat sooner rather than later. Also, at age 65, you probably do not want to wait a long time to treat. The drugs are potent and, if one has many other serious medical problems (which often develop as we age), those problems may be contraindications to treatment.
65 is not too old to treat. I was 65 when I started treatment and am now 66, with one month of treatment left to go. The treatment is no picnic, but it is doable. The key to successful and tolerable treatment is to treat the side effects proactively, promptly, and correctly. Many people have mild side effects. Others have more serious side effects, but the worst side effects are treatable with prescription medications.
Bipolar disorder will not exclude you from treatment as long as you are being treated for it and it is under control. Many of us on the forum have a history of depression or bipolar disorder. We are on medications for the disorders and are doing well on treatment.
While there may be certain serious medical conditions which may affect the possibility of treating, most people are healthy enough to treat. Most likely you would be a candidate for treatment unless you have some major medical disease which you did not mention or your liver disease is so advanced that you have decompensated cirrhosis. A transplant would not be done unless you have very advanced liver disease.
A biopsy will tell you how damaged your liver is. Then you can make an informed decision about treatment.
The ramifications of Hepatitis C are varied. Some people may never show symptoms or damage from Hep C. Others may develop progressive liver fibrosis, and this fibrosis tends to progress faster as we age. No damage is Stage 0. The highest stage of fibrosis is Stage 4 (cirrhosis). Cirrhosis is divided into compensated cirrhosis or decompensated cirrhosis. Compensated cirrhosis means your liver is still managing to work even with advanced fibrosis. Decompensated cirrhosis means the liver can no longer do its job and this causes many sypmtoms to appear such as ascites (fluid retention in abdomen), esophageal varicies (distended blood vessels in the esophagus which can bleed), fluid retention (in abdomen/legs/ankles), platelet and clotting problems, hepatic encephaolopathy (mental difficulties), and several other problems. Not everyone develops cirrhosis but there is no way to tell which people with Hepatitis C will advance to cirrhosis or how fast.
In addition to the obvious liver damage and problems from the liver, Hepatitis C has been implicated in causing, and/or triggering many diseases not normally associated with the liver (extrahepatic diseases). These diseases include cryoglobinemia, vasculitis, skin problems, rheumatological and immune disorders, kidney problems, lymphoma, eye problems. Some studies also show that Hep C can worsen Diabetes Type II, heart and cardiovascular problems, and many more.
So, Hepatitis C is not benign even when one has a lower stage of liver fibrosis. It can manifest itself in many ways and can cause a lot of damage to the liver and other organs.
Can't add much more. I think one of the best things to do is read old posts. You can learn an awfully lot. You won't know much until you get that biopsy -- and I do recommend that so you can tell where you stand. Your other questions about treatment and transplant all hinge on the condition of your liver.
It is important to treat with someone who is knowledgeable. Doctors do not like to admit it when they are not -- but an awful lot of GI's make their money on colonoscopies and really don't make much money on Hep C patients. Therefore they don't understand the issues that plague us and many don't care a whole lot. For my second treatment I chose a doctor 350 miles away - a hepatologist. It has been worth it to me to travel for the excellent service and knowledge.
Hey Ceanothus -- nice take on the Hey Jude. We are showing our age!
Wow, thanks folk for all the information and support. Good to hear I'm not the only "senior" dealing with this issue. I do have genotype 1a and the virul load is 2 million not 200 million (oopsie, just a bit of drama there!)..I will look at back feeds/threads? not sure what the proper nomenclature is. Also is the virus supposed to disappear with treatment? What do these virul count numbers actually mean? What is high what it low?
There are plenty of us seniors treating and many others not far behind us in age. 3 out of 4 people with Hep C are Baby Boomers, so you are in good company.
If treatment is successful (as it is in 75-80% of the treated people) then the virus is gone for good (unless you get reinfected from a totally new exposure). A person is cured and the term for that is Sustained Viral Response (SVR).
If I recall correctly, anything above 800,000 is considered high. So 2 million is considered high, but there are plenty of people on the forum who had starting viral loads of 10 million, 20 million, 30 million, or higher. (Mine was 14.4 mil.)
The viral count is the number of Hep C virons in 1 milliliter of blood. Don't let that freak you out. It sounds bad, but that count usually comes down fast after starting treatment.
Mostly the viral load is used to monitor your response to the treatment. So they do a starting VL and then monitor the VL at 4 weeks, 12 weeks, 24 weeks, and 6 months after the end of treatment. Some doctors do the viral loads more ofter. And, if you end up treating for 48 weeks instead of 24, then you need that 48 week VL too.
Just to clarify ... When giving the percentage of people who SVR, I was referring to treatment naive people, not treatment experienced people. junglejude is treatment naive so the numbers applied to her situation. There are various factors which affect outcome.
"Beneficial patient-related factors include younger age, nonblack ethnicity, low body weight (≤ 75 kg), low body mass index, absence of insulin resistance, and absence of advanced fibrosis or cirrhosis."
Caveat re: article I cited above: It might be fairly characterized as more of an infomercial than real medical research. The author is Dr. Zein, who (thankfully due to new journal rules) " ... disclosed consulting, teaching, speaking, and receiving research funding from Merck (makers of boceprevir) and Vertex (makers of telaprevir)."
The article and accompanying table omit any discussion of some significant side effects (depression, cognitive impairment, etc) and do not at all address the percentage of those who wind up with permanent or long lasting sides.
Please realize that many of our doctors get their knowledge from such sources.
I'm 65 and BPII. The BPII is managed by meds - my hep doc. is confident in that and knows I will be closely monitored in case the swinging gets stronger. You know what I mean. I take Klonopin and Lamictal too - surprised that you take Prozac since we BP's usually cannot tolerate anti-depressants... it's a hallmark of having bipolar disorder. But you do what works for you - for sure.
At one point here (I'm not treating quite yet - there is a concern about my glaucoma, but that will be addressed by my opthalmologist and my hep doctor in the near future) I thought my age was going to work against me. Well, truth is, of course it would be better to do this when we're younger ~ it would be easier on us and maybe up the chances of SVR (MAYBE), but as said, the Baby Boomers are showing up in droves with the virus. So we do what we gotta do. Best wishes to you on this journey that none of us wanted to take. But one way or another, whether we realized it or not, we did buy a ticket.
thanks for the input and encouragement..Can you tell me what side effects are the most common during treatment? Also what does one do to prepare? I am thinking that having a solid support system in place and being as healthy as possible prior to starting is a good idea. My main concern is the possible cognitive issues such as (?). My BP is well under control since I have stopped drinking and drugging and my doctor and I have even discussed a possible diagnosis of Seasonal Affective Disorder as opposed to BP. In any event...I would never want to become pyschotic again..Could this be a problem duing treatment?
Also I can't seem to figure out how to do my profile...tried to edit and submit and upload picture but I don't think it worked...oh well.. Mahalo and aloha for now
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.