Seeking Advice on Treatment for Hepatitis C

Updated on October 14, 2008
B.H. asks from Compton, CA
15 answers

I need advice or suggestions as to what any of you out there are doing for yourself if you have hep c.

1 mom found this helpful

What can I do next?

  • Add yourAnswer own comment
  • Ask your own question Add Question
  • Join the Mamapedia community Mamapedia
  • as inappropriate
  • this with your friends

So What Happened?

First of all many thanks to all of you who cared enough to write! Roma your knowledgeable enough to have given me such great advice. I am a veteran and am going through the Long Beach VA for my treatment when I decide to start. We have discussed viral load, and I have had 2 biopsies. I do have the chronic type with geno type 1. I wanted to hear what others know so I can arm myself with educated questions next week when I go in for my appointment. I have heard about the depression, vomiting, hair loss etc. This is considered a chemo therapy. I had breast cancer so I know all about chemo. I will write again and fill you all in when I see the doctor.

Featured Answers

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

H.S.

answers from Los Angeles on

I don't have hep c, my husband does. he's had no symptoms and no cihrossis (scarring) which he found out through a liver biopsy. It was therefore not suggested that he do the interferon. I know 3 people that have done it. It is very hard. They all suffered from SEVERE depression- like suicidal! At least 2 of them have been tested and there is NO sign of the virus. Have you had a biopsy to see where you are at? Good Luck and be well. Best, H.

More Answers

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

M.B.

answers from Honolulu on

Hi B., Go and see a chinese herbolist asap. Your mamasource friend, M.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.A.

answers from Los Angeles on

Have you tried Cedars Sainai Hospital? They have a program or trial that my boyfreinds father just completed about 2 or 3 years ago. once you are over 65 you can not do this but you are young enough to go through the program if you can get into it. Since it is a trial, i belive you dont have to pay for it. the end result? he is FREEE of the disease. if you do the trial you HAVE to HAVE TO follow all instructions to the letter or it will NOT work. many get into it and drop out of it becuase it is not very pleasant. Yes, interferon is used. Yes, you will see your hair thinning out, yes you will be sick. BUT you will get rid of it. he has had Hep C since the 80's due to a blood transfusion and now is free of it. they do periodic testing to see what his levels are and he is still in remission. I do not know what the program is called, if you like i can find out what it is called exactly and let you know. I may even be able to get a phone number for you as well. just let me know if you are interested in it.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.D.

answers from Los Angeles on

There are many things to do and the first and easiest one is adding Milk Thistle to your supplements. The second one is to get to a good accupuncturist (I have a good one in Irvine), seeing a Doctor of Osteopathy (DO). How about checking out the book written by the mom of the mom /daughter country singers (brain fart, cannot think of her name). She suffered from it and has it now in remission.

Good thoughts, and a mission help as well:o)

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

R.L.

answers from Los Angeles on

Hi B.,

I specialize in writing about infectious disease, especially Hepatitis. HCV can occur as either an acute or chronic disease. If you were diagnosed 40 years ago, it's clear that you have chronic HCV, which is very serious, indeed. The virus itself does not destroy the liver: instead, the damage is done by the body's immunological response in its attempt to fight the virus by killing the cells harboring the virus. Thus, it is very important that you get treatment to reduce your viral load (how much virus that can be detected in your blood) as low as possible -- preferably to the point where it's undetectable. The less Hep C virus you carry in your liver cells, the less your body attacks the liver, and the longer you live with a better quality of life (and without a liver transplant).

Standard therapy is to treat with pegylated interferon 2-alpha and ribaviron. Interferon blocks the release of viral particles from infected cells so that new cells can't be infected. It boosts the inate immune response, but not in a way that kills cells. Ribaviron keeps the virus from replicating (producing more copies of itself). Your daughter may think it's too cookie cutter, but there really isn't any other approved therapy available.

There is a move to individualize therapy, however. Before beginning therapy, it is very important the your doctor genotype the HCV that you harbor and get an accurate viral load. Genotypes 2 and 3 tend to respond much better to therapy than types 1 and 4. Knowing what genotype you have can help your doctor predict the likelihood that you will respond well to medication and how long you should stay on the treatment. Standard treatment length is 48 weeks, but new research indicates that people who respond very rapidly (called EVR -- early viral response) with at least a 2 log reduction in viral load (i.e., 100 times less than started with) after 4 weeks of therapy have a greater likelihood of achieving remission of the disease and sustaining remission of the disease. They also can be treated for a shorter amount of time -- 24 weeks, rather than 48 weeks. This is good to know, since the therapy is not pleasant for most people.

It is also very important to know what your initial viral load is -- not just so your doctor can tell if you're responding to therapy, but also because it is predictive of how well and whether you're likely to respond. Usually, people harboring less than 200,000 to 500,000 viral copies/mL blood are expected to respond better and are more likely to achieve sustained remission.

So -- make sure you're seeing a board certified hepatologist who is familiar with all of this -- a general practitioner is not experienced enough. GET THE TREATMENT, and START NOW. Also, if there is a chance that others in your family and circle of friends/acquaintances have come into contact with your blood they should get tested as well. Anyone you have had a sexual relationship with should be tested, although if you have been in a long-term monogamous relationship it is, believe it or not, not very likely that your mate has been infected. BUT, if you were diagnosed with HCV before you had children, they should be tested immediately as there is a high rate of transmission from mother to fetus.

BTW, your doctor will want to do periodic punch biopsies to determine the extent of liver damage. There are now blood tests that can be used in combination that can give just as accurate information as the biopsy and with far less pain and risk. Ask your doctor to learn about the APRI set of tests. Also, within the next couple of years, Siemens Healthcare Diagnostics should have its ELF test on the market in the US. This has been used with great success in the UK, but is only available from one lab, iQur, Ltd. (Southampton, UK). Both of these tests measure fibrotic processes and turnover of cellular products in the liver (your doctor will know what this means).

Good luck B.. This will be a tough disease to get control of, but it can be done.

R.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.P.

answers from Los Angeles on

B. - My mom too had Hep C and told us right after we returned from our honeymoon. But when she told us she also let us know that she was going to be takign the shots three times a week, for a 9 months to a year. She is very tiny and with the medication got even smaller! Very sick every other day, similar to kemo treatments....BUT to be honest with you we are all glad she was strong enough to go thru it! She has been cleared for 7+ years now! She has her lvier checked on a regular basis and has never once had a bad report. I would love tot chat more but Along with the rest of my family mom included we are glad she did it! Becuase she now has a great life and very strong positive for the future!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

C.H.

answers from Los Angeles on

Have they done an iron panel on you? Have them check your ferritin levels to see if excess iron is destroying your liver.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

D.E.

answers from San Diego on

Hi B.,

My father-in-law has Hep C. He has undergone many treatment trials and has been very, very sick during them. However, now he's fine and his virus levels went down after the last trial. Get a second and third opinion if you're not comfortable with what your doctor told you. I know he did some of his treatments at Stanford.

Good luck!
D.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

K.G.

answers from Los Angeles on

The US has the health care system of a poor, under developed, 3rd world nation. Truth. Inmates get better healthcare at Guantanamo Bay than the average American citizen.

An alternative to dangerous pharmaceutical drugs and outrageously expensive US medical practices is to rid yourself of synthetic and processed foods altogether and to consume live raw plants and plant extracts that promote liver health.

Licorice extract is one such plant product and actually assists with healing Hep strains. Seek to gain knowledge about natural care, it's the way the body is intended to heal.

http://www.naturalnews.com

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

D.R.

answers from Los Angeles on

Hello B.,

My husband was diagnosed with Hep C a few years ago. The only treatment at the time was Interfuron. When he finally decided to take the treatment, the Interfuron/Riboviron was available.

My husband was the first Kaiser patient to try this. He was the "guinea pig". The side effects that he had were; bright red spots at the injection site (will fade over time); very tired and depressed. He would take the injection on Friday and felt pretty sick until Tuesday.

Kaiser had a support system in place, and that was imperative to this process.

He was on disability for the whole six months. Thankfully, at the 3 month mark, Kaiser tested him to see if the treatment plan was working. If it wasn't, he could opt out. If it was working, it gave him incentive to continue. Fortunately for him, it was working!

He continued on and I can gladly thank God that he is completely well. Apparently, the virus stays in the body, but he's been tested every 6 months the past 3 years and it is completely dormant.

His brother also had Hep C and decided to try to eat healthier, rather than take the treatment. He passed away last year at the age of 61. My husband was upset that he didn't try it.

Yes, it can make you feel sick; but what's the alternative?

Please let me know if I (or my husband) can be of more assistance.

God Bless You,
D.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

C.S.

answers from Las Vegas on

Just a warning, I see a suggestion of adding Milk Thistle to your supplements. Milk Thistle makes my husband very sick and not everyone can take it. It seemed to have an allergic reaction and it affected his mood as well as made him throw up very violently.

If you choose to try it, just watch for reactions.

Best of luck!
C.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.D.

answers from Los Angeles on

I'm sorry to hear about your hep c and while I know nothing about this disease I do know the most important thing is to find a doctor with whom you have a rapport and can discuss all of this with. Unless your daughter is a doctor I would listen to her opinion but not take it as the gospel. Remember that other people's experience's are just that - their situation may not be the same as yours. Look for a doctor you trust and stop second guessing your choices. Good luck

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

K.S.

answers from Los Angeles on

Hi B.,

While I have not gone through your experience, I have had my own experiences with problematic health issues and found acupuncture and herbal therapy to be immensely helpful.

I would really recommend looking into complimenting your Western Treatments with acupuncture and herbal medicine. Traditional Chinese Medicine works especially well with diseases that are chronic and debilitating. I know for a fact that there are a lot of Chinese herbs that, when taken in the proper combination, can really help strengthen the liver and liver function.

Many insurance programs will pay for acupuncture treatments; additionally, it is provided under Medi-Cal’s “optional benefits” program.

To find someone in your area, take a look at http://www.acupuncture.com

I hope that is helpful -- best of luck to you.

K.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.L.

answers from San Diego on

Those are the two current drugs out there that is the standard therapy for what you have. From what I have read, it may have side affects but they can counter act them with other stuff. Currently, this is the best thing that you can do as far as I've seen. If you are up for it, you could go to www.clinicaltrials.gov and search the site for trials that are currently going on and you may be interested in. I would do what your doctor says and discuss trials as well. Check out the site though. Those drugs that he recommends are part of the studies too.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.P.

answers from San Diego on

I just heard a testimony last week of someone who had hepatitis in their twenties and is now in sixties and living healthy.

If you would like to learn what he did, let me know.

God Bless!

J.
____@____.com

For Updates and Special Promotions
Follow Us

Related Questions

Related Searches