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    Old 04-24-2005, 10:13 PM   #1
    hope34
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    Question Have HepC but a problem with Interferon...what now?

    I have had HepC for over 20 years, was diagnosed and tested many times, but every other time over the years I was told there was no sign of the disease. This test as I understand it has to do with the number of antibodies against the disease present in the blood.

    Needless to say I wasn't too concerned until last year, when I was diagnosed with serious HepC and my liver was in stage 2 (fatty liver) which was determined by a biopsy. In the meantime I moved from the Northwest to the Southeast, to be near my family and had another test done. This one was only 2 months after the previous test and my liver specialist told me my liver was in stage 4 (chirrosis) which he determined with a catscan. This gave me a tremendous shock, but I want to get on with treatment.

    I asked my doctor, who is a very highly rated specialist, if I could get on a transplant list. He told me not at this time, not until I lost weight, as body weight has to do with how much anesthetic I have to have, and the operation would last 6-8 hours, and I could not survive that long with that much anesthetic. I have lost 27 lbs and my next appointment is tomorrow (Monday, Apr 25).

    If that was the only problem, everything would probably be on track, but my biggest problem is the HepC. I am also schitzophrenic, under medication most of my life, and he told me he could not give me interferon because it would cause extreme depression which I might not survive.

    Are there other treatments for HepC out there? Are there alternative meds that can help? I will talk to my doctor tomorrow about that of course, but doubt that he will give me any hints of alternative medications.

    Anyone out there with this problem????Please help. VH

     
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    Old 04-25-2005, 06:27 AM   #2
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    Re: Have HepC but a problem with Interferon...what now?

    As far as I know, Interferon is the only FDA approved medication for HCV.
    There are alternatives - e.g. Chinese Medicine - which may help get your liver to the better condition. But these alternatives does not help you to get rid of the HCV - only help you (and your liver) to live with HCV.
    Unfortunately, as far as I know, none of the alternatives was scientifically proved to be efficient.

    Petr

    Last edited by hordubal; 04-25-2005 at 06:33 AM. Reason: Addition

     
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    Old 04-25-2005, 06:54 AM   #3
    thanbey
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    Re: Have HepC but a problem with Interferon...what now?

    Quote:
    Originally Posted by hope34
    I have had HepC for over 20 years, was diagnosed and tested many times, but every other time over the years I was told there was no sign of the disease. This test as I understand it has to do with the number of antibodies against the disease present in the blood.

    Needless to say I wasn't too concerned until last year, when I was diagnosed with serious HepC and my liver was in stage 2 (fatty liver) which was determined by a biopsy. In the meantime I moved from the Northwest to the Southeast, to be near my family and had another test done. This one was only 2 months after the previous test and my liver specialist told me my liver was in stage 4 (chirrosis) which he determined with a catscan. This gave me a tremendous shock, but I want to get on with treatment.

    I asked my doctor, who is a very highly rated specialist, if I could get on a transplant list. He told me not at this time, not until I lost weight, as body weight has to do with how much anesthetic I have to have, and the operation would last 6-8 hours, and I could not survive that long with that much anesthetic. I have lost 27 lbs and my next appointment is tomorrow (Monday, Apr 25).

    If that was the only problem, everything would probably be on track, but my biggest problem is the HepC. I am also schitzophrenic, under medication most of my life, and he told me he could not give me interferon because it would cause extreme depression which I might not survive.

    Are there other treatments for HepC out there? Are there alternative meds that can help? I will talk to my doctor tomorrow about that of course, but doubt that he will give me any hints of alternative medications.

    Anyone out there with this problem????Please help. VH
    Congratultions on the weight loss!


    You know what? I am having trouble making sense of the information in your posting.

    A highly rated specialist would rely on a ct scan vs a biopsy result? That isn't making much sense to me. A biopsy is far more reliable than a ct scan. And, if you have no evidence of the virus in your blood ( I am assuming this is what you mean by no evidence of the disease) then even interferon treatment would not be indicated.

    At stage 4, if that is accurate, is STILL no indication for a liver transplant. Anesthesia is an irrelevant factor since you are no where near needing a transplant if you are stage 4. Stage 4 is not end stage liver disease by any means and no transplant center would even evaluate you at this point.

    If you have a fatty liver, that is definitely where your energy needs to go. A fatty liver can cause cirrhosis, too. It may not be the hepC if you are undetectable for HCV virus.

    Here are the strategies for a ghealthy liver. It is possible for a reversal of liver damage IF you continue to lose the weight and you adopt a healthier lifestyle.

    A complete lifestyle change and a commitment to a healthier life is required.

    1. Keep moving. Any exercise is better than none, but a true cardio program on a regular (and frequent basis) is optimum. At work, take the stairs. At home, hop on a treadmill while watching TV. Begin by aiming at a total of not less than 30 minutes a day. Nothing increases energy and reduces fatigue like regular exercise.

    Never sit when you can stand, never stand when you can walk. Never ride if you can get there by walking or biking. Laying around does not improve fatigue, it makes it worse.

    2. Lose weight. Even a 10 percent weight loss will make huge difference. Maintaining a normal weight is more than a temporary diet. It means avoiding liver unhealthy food choices. Limit red meat, if you can, but eat quality protein and never, ever, fast. A half cup of yogurt before bed maintains stable enzyme levels, but any low fat, low calorie snack will do. Eat more fish, especially wild fish. Never save starving children by cleaning your plate. Don''''t eat just because it''''s in front of you (in restaurants in particular) Generally, a restaurant portion is twice or three times a healthy portion of food. So, take a friend and split the meal or take a doggie bag. Because restaurant meals are notorious for high fat and salt content, there is a proposal to require restaurants to provide nutrition information to patrons. Be aware that frequent restaurant meals are not like home cooking. High end restaurants are no safer in this regard than fast food outlets. Always ask for low fat/low salt options.

    3 Eat better. Learn about fats and carbohydrates and commit to eating the good ones and avoiding the toxic ones. Not all are created equal. This is critical for your liver. Forever.

    4 Snack sensibly. If it makes your fingers greasy, do not eat it. Choose fruit or yogurt. Avoid "fake" foods, even the so called diet ones. Go for a handful of nuts or an apple.

    Forage for fiber and go with whole grain. Two thirds of anything you eat should be plants.

    5. Learn to read food labels. 3 grams or less of fat. More than five ingredients? skip it.

    6. No alcohol. Doctors often think that wine in moderation is good, but what is moderation? The answer often depends on what the doctor''''''''s drinking habits are.
    Alcohol is a liver toxin. And alcohol is alcohol, whether it is wine or beer or vodka. Avoid it totally. You can get the same good stuff that is touted in red wine from eating blueberries, raspberries or red grape juice. Seriously. The rest is marketing.

    7. Check out the B vitamins (if you have a fatty liver, especially) There is some evidence, but not conclusive evidence, that B vitamins assist the liver in processing out the fat and maintaining health. B-6 and B-12 have been specifically studied and B-12 may have some protective value for those with hepatitis C.

    8. Consider a support group (in person or online) Many companies now offer healthclub discounts or walking clubs to encourage employee health. What a great way to take a break during the day: a nice walk with your co-workers, a pick up basketball game or a yoga class. I recommend a couple of online support groups (healthboards,com [hepatitis]; *****)

    9. Drink lots of water. Flushing toxins requires sufficient fluid intake. Also, get enough sleep. The liver and GI system actually recover while you sleep. A liver needs its rest!

    10.Do not smoke. There is nothing that mitigates or reduces the damage to your liver that smoking causes. There is no doubt about this anymore: smoking causes liver scarring called fibrosis and is STRONGLY associated with liver cancer (as is alcohol intake) In combination with a fatty liver or viral hepatitis, you have two or more liver toxic processes going on. This includes exposure to second hand smoke. We know about the damage to heart and lungs, now we have evidence that the liver is a serious risk, too. If you are going to treat, tackle smoking first for your best chance to reduce side effects and potentially increase your chance of responding.

    11. Lastly, educate yourself. Fatty liver was once thought to be a benign condition. Now we know it can lead to cirrhosis of the liver and liver failure if not managed properly. Currently, there are no prescription medications that can reduce the fat in the liver. In combination with hepatitis B/C, diabetes, obesity, and poor lifestyle choices,

    12. Monitor your condition regularly. It is important to have regular check-ups with your doctor and to stay on top of any new information or new treatments that become available. In combination with proper care, these startegies can minimize progression to serious liver damage. Get vaccinated for heps A and B.


    Hepatitis is a serious disease that should be taken and managed seriously, hether or not you are symptomatic. For this reason, watch your over the counter and prescription medications. Try to take as few medications as possible. Reducing or preventing disease progression and severity is possible.

    thanbey

     
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    Old 04-26-2005, 10:45 AM   #4
    hope34
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    Re: Have HepC but a problem with Interferon...what now?

    Wow! Thank you so much,both of you that posted a reply. I also got a much better report from my doctor yesterday. I must say that I have very much confidence in my doctor, and know that he is very qualified. He is a part of an "Liver Institute" which is also in research, but he does have one flaw, in that he doesn't keep you well informed as to how he is treating you and what stage you are in. This has kept me in the dark and with schitzophrenia, gives me too much opportunity to go into deep depression. This was my problem Sunday when I posted, but I squared off with him yesterday and had him tell me my complete diagnosis and what his plan of treatment is for me.

    You need to understand, this doctor is kinda weird, like a computer nerd, you know. He is so smart and educated that he doesn't seem to be able to get down on the patient's level to keep them informed. Kinda like a living computer, that if you don't ask a specific question, he won't elaborate. ;o)

    Now I have him figured out, I will ask him point blank what I need to know. But another fault is a common one, that is the best doctors are so overloaded they don't have the time or even the care to give you personal attention. But I know now how to handle that also, because if I get him in the exam room with me, I ask him so many questions that he can't leave until I am satisfied with his answers.

    His diagnosis of me yesterday was that I was in no immediate danger, I do have serious HepC and extensive liver damage, but he cannot give me interferon until I get my medication for Schitzophrenia worked out to normal because it could cause me to be suicidal. My psychiatrist is working on that, to get me back to being stabilized. He says this could take up to several months, and I signed a permission for him to be able to work with my psychiatrist. He finally told me to just keep on my weight program and to work on the depression bit and he would check me out in a few months. Thank God, who is really in charge, and you two kind posters who have given me such good advice.

    By the way, I am a 45 year old female, divorced years ago and have 3 grown healthy boys. My normal weight is around 150 but have gained up to 300 because of the schitzophrenic medications. I probably got this HepC many years ago in my foolish young days by sharing needles. Now I am paying the price and asking forgiveness and looking for a quality of life for the rest of my life. ;o)
    Thanks for all the advise.
    God Bless All
    VH

     
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    Old 07-07-2005, 01:28 AM   #5
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    Re: Have HepC but a problem with Interferon...what now?

    I would be very suspicious of a doctor that thinks he can tell damage with a sonogram and doesn't seem to know that people with schizophrenia are usually not not elegible for transplant. So all the talk about anesthesia was rubbish.

     
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    Old 07-09-2005, 06:10 AM   #6
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    Smile Re: Have HepC but a problem with Interferon...what now?

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    I have had Hepatitis C for over 20 years now. I find the way it affects me is an onset of chronic fatigue(have to go and lie down) can't think straight and poor memory. All these symptoms are linked because if you are tired it affects your concentration and memory. Depression is something that cast it's dark shadow over my life from time to time but I have learn,t to think that when I am depressed I know it will not last for ever.
    As for alternative medication I find Milk Thistle helps me enormously. My mum orders it in bulk from Guernsey or one of the islands off Britain where there is a tax loop. Also accupuncture helps me aswell and due to having drug problems I am fortunate to get it free from our local voluntry drug clinic. To all with Hep C try and stay positive. David

     
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