Hep C Discussion Forum

Tig · Admin

Oldmarine with HepC since 60's. Never treated with drugs, always natural. VA now will pay, need advise.

Tig · Admin

Hi Rhianna,

Welcome to the forum! Since this thread belongs to Old Marine and we don't want to take it off topic, please feel free to start a new thread in the appropriate section. Please provide some info on your Dad, about his current condition. Did he go on to SVR?

I also wanted to mention that Harvoni is a two component drug, Sovaldi and Ledipasvir, in a single pill. Sovaldi, by itself, must be given with another drug for treatment, there are several options and that's determined by genotype, RAV's, Fibrosis and previous treatments.

Thanks for your advice, best of luck to your Dad!

wendyo · Guru

Welcome Oldmarine,

I did the old interferon and it did not work. Besides no alcohol, did herbs until they found some new drugs for us. My progression was very slow due to the sobriety at a young age and healthy living. The herbs will not get rif of the HCV so I agree with the others here...if you can get the new meds...GO FOR IT. The side effects are very manageable. After what you have been through in your life, you can handle this. Thanks for your service and as a fellow Floridan, join us on this journey

wendy

RHIANNA281 · Newbie

Hi. My name is Rhianna. I do not have hep C, but was the primary caregiver for my father who had it. I'm hoping to share some of the knowledge and experience I gained during that process both because I want to help, but also as therapy as this was a long, hard road. Before I go further, I must say I have a special place in my heart for Marines. I was married to a Marine for 5 years, and some of my best friends were Marines, Ooh Raa! :) But anyway, hopefully the info I have will be helpful to you. My dad had an awesome gastrointerologist. A Hepatologist would have been better, but he had Medicaid, which covers treatments that are probably similar to what the VA covers (not always the best, but in the case of the VA, THE COVERAGE SHOULD BE FANTASTIC!) Anyway, the gastro my dad saw would not touch Sovaldi because of the potential side-effects. Not that the drug doesn't work, but because it doesn't agree well with everybody's system and can cause a lot of issues, particularly gastrointestinal, diarrhea type issues, etc. My dad actually took Harvoni. This is the leading Hep C Clearing drug on the market today. He was given a three month/90 day regimen which is typical for someone who has not unsuccessfully undergone ribavirin/interferon treatment prior. He started taking the drug when he had stage 4 liver damage. He refused a biopsy, but an educated guess on the docs part revealed that he likely had less than 10% of his liver functioning. Pretty severe stuff. But anyway, he started taking the drug on April 11, 2015 and then underwent a drug test on April 21 to look for viral load. He came up with an undetectable viral load ten days after starting treatment. Pretty incredible.

So as far as herbal treatments, I certainly would not stop that, or if you have, like I believe you said, I would restart it immediately. I know there are a myriad of herbs available and it sounds like those were helping immensely. The only herbal contradiction for Harvoni that I am aware of is St. John's Wart. That is actually listed on the prescription itself as a no-no.

So as far as advice, I would determined whether or not the VA would cover Harvoni for you, as in my experience, it's extremely effective, a one-pill a day method, and my dad experienced literally zero side effects. In fact, the only side effect listed on the prescription insert is fatigue and headache, neither of which he had. However, if you cannot get Harvoni, Sovaldi is effective, and will probably clear your virus, even if there are a few side effects. I swear, western medicine doesn't get it right very often, but these drugs are amazing. I would take either one in a heartbeat.

Hope this helps. Take care of yourself.

-Rhi

dharmabum · Senior Member

Of course, mea culpa...

Cinnamon Girl · Guru

Hi Xtra and Joann, this is a very interesting discussion and it could run and run, but would you mind continuing it on a separate thread, please? Sorry, but this is John`s (Oldmarine`s) introductory thread and we`re veering off onto completely different topics.

Thanks! smile

xtra · Veteran Member

An Interesting Question

How fast can a live recover? I still have bruises on my arm that are new. I bruise easily. I have scratches from where? I am always scratched and bruised.

However, my fibrosure blood test was .58 borderline 2/3 so I am not cirrhotic although who knows how accurate the fibrosure blood test is.

BUT, and this may be critical. I had activity level of A3 which is severe inflammation. The ALT/AST were very high.

The activity and Alt/Ast dropped dramatically in 9 weeks in treatment.

So the Question Is, can a liver start functioning again quickly if the inflammation level goes down? I had assumed the energy levels, muscle tone and bruising would improve as the liver healed or in time, not immediately.

Does anyone know?

-- Edited by xtra on Thursday 17th of March 2016 09:13:34 PM

dharmabum · Senior Member

Hi xtra,

Thank you for sharing. I went to eye doc for a routine exam last April as I was finishing Harvoni and was overdue to have my eyes checked. That is when they found the bleeding on the retina of my left eye. They knew about my Hep C and mentioned diabetes, Interferon or blood pressure as possible causes of retinal hemorrhage. BTW, my vision is very good in both eyes.

Been back to them 3 times in the past year. I had the dye injected last week and pictures taken. They sent me home and told me not to be nervous-come back in 4 months. Last eye exam was 5 years ago and it was normal. 3 different eye doctors and no meaningful diagnosis!

Is it just me or aren't we all just a little doctor weary?

Linuxter · Guru

Hi John,

Welcome to the forum!

It's nice to have ya here. Please make yourself at home. We're all in the same boat ... we've all either got or had HCV and either pre-treatment, on treatment or post-treatment. So you are among friends and like individuals and you will soon find that landing here was a great thing. There's a ton of excellent information and very caring and friendly folks here.

Many of us have had HepC for 40 years or more, I didn't even know I had it until late last year and as soon as I found out, like you, I quite drinking and started searching for information.

HCV is a stealthy beast, it can go along 30 or more years unnoticed then really begin to do some damage in a hurry, stopping alcohol is a very important first step and you've already done that (nice job). Getting rid of the virus can add another 15 years to your life and help you avoid many of the nasty effects of liver damage.

Now is a perfect time to get treatment, there are tried and true treatments that work (none of that interferon stuff any more) and new regimens with even less side effects popping up every day now.

You wouldn't believe how many folks on this forum have recently reached SVR (Link to Abbreviations used on this site)

Not to worry about your computer skills, you are doing fine and communicate well, it's nice to have ya here. Airborne

Dave

xtra · Veteran Member

dharmabum

It happened suddenly. I had serum seeping behind the retina in my right eye. It was diagnosed as wet macular degeneration. I had shots for 18 months directly into the eye but the bleeding/seeping continued.

Finally, the Doctor used a laser to seal the bleeding. The procedure is a dye material given by IV in the arm. Within a few minutes, the dye will reach the eye via the blood and pinpoint the spot where the serum/blood is leaking. Then the laser aims to that dye spot and cauterizes the leak. Magic!

That fixed the right eye but I had shattered vision, blank spots, wavy line, distortions, and peripheral hallucinations in the left eye.

The Doc was mystified because whatever was affecting the left eye was not in the eye, no fluid, no drusen which is a buildup of material that blanks out vision. No reason for the vision problems

The Doc ordered a brain scan because the Doc said that it could be bleeding/serum seeping (bruising) in the brain. The brain scan was clear and normal.

The Doc who did the brain scan finally reacted to my statement "I have Hepatitis." Most docs have never reacted to that. Don't know why but this one ordered a test. Here I am on treatment.

I am starting to wonder if this isn't Hep C. Bruising is a symptom of the disease. The seepage that causes black and blue spots on an arm or leg may also happen in other parts of the body.

My INR, clot time is 1.2 borderline normal but I wonder truly because the vision in the left eye is clearing. The vision in that left eye is still darker than the right but all the shape shifting and distortions are disappearing.

Do not ignore changes in vision. If it is not the eye, it could be the brain.

-- Edited by xtra on Thursday 17th of March 2016 08:13:22 PM

dharmabum · Senior Member

Hi Xtra,

I went through Harvoni, 12 weeks and had mild gastro issues only.

Without hijacking this tread, I want to ask you about the bleeding you mentioned in your eyes. I have bleeding around the retina behind the eye. I am not diabetic or on interferon, but do have high blood pressure. Is your bleeding the same? Thanks so much,

J

-- Edited by dharmabum on Thursday 17th of March 2016 01:50:17 PM

xtra · Veteran Member

I was wary also after managing this disease by myself very successfully for abt 50 years. I was encouraged to seek treatment with Harvoni by the good folks on this forum.

I am 9 weeks into a 12 week course. I have increased energy, muscle tone and a puzzling eye problem is clearing up (not certain that is related.) I am sleeping fewer hours.

My brother, who was in Viet Nam, has antibody reaction which means he was exposed to the virus but doesn't have a viral load. He hasn't a clue how he acquired the disease

The VA will give treatment now from what I understand.

I am glad I am going through the treatment. If I were younger, I might be concerned about side effects 20 years out because the drugs are so new but at my age, I am learning that fatigue, mild depression, sleeping 10-12 hours a day, lethargy and possible bleeding in my eyeballs is not entirely due to age. The Dragon is a dread disease.

If you get any other illness, you might have to take drugs for cholesterol and such, those are very liver toxic. The Dragon may lay quiet but it never sleeps and it will win in the end.

Just my two cents worth

-- Edited by xtra on Thursday 17th of March 2016 03:40:47 AM

mallani · Guru

Hi John,

Welcome from me as well. Like you, I was infected in Vietnam in 1969-70.

You will be cirrhotic by now and need treatment. Herbs do nothing to clear the virus, but can mask the real LFT readings.

24 weeks of Harvoni would be the treatment I'd want. Best of luck getting treatment. Cheers.

JimmyK · Guru

Greetings;

My Father was a Marine in the South Pacific WW2. Many thanks for your Service!

Welcome to the Family here.

Some Herbs can of course help strengthen, cleanse and protect the liver. They can't however remove the virus. The new DAA's can and personally I agree that you should jump on it.

Ask The VA about Harvoni as well. My Doctor told me that the VA is just now getting a significant break on cost.

Regards

JimmyK

wmlj1960 · Moderator

Hi John.
Welcome from me as well. #1 - thank you for your service! You are in the right place to find information and support which will be very helpful for you as you progress to a HCV free life. As already said, this is an excellent time to get cured. The latest DAA medications have an excellent success rate without all the potentially horrible side effects that went along with the older interferon based protocols. Although there is plenty of improvement needed with the VA, it's great to see them finally doing better at treating patients and saving lives than what we've seen in the past. If you can get treated then I'd say go for it by all means. As already discussed you will need to avoid those herbal remedy's while taking the HCV medications.
I'm curious about how are you treating the Hep B up to this point: herbal, prescription medication, etc.? We have another member (Shadowfax) who is co-infected with HBV, currently treating HCV with Harvoni, and doing very well. You may be interested in viewing this thread for more about that.
Make yourself at home and ask any questions you have. If you need definitions for all the abbreviations you'll be seeing around here then see this thread.
We're glad you're here and wish you well on your journey to a Hep C free life. smile

Tig · Admin

Hey Marine,

Welcome to our forum! I'm an Old Navy Corpsman, so know that you're among friends and we'll do our best to help you find the answers you seek.

I wasn't treated by the VA, they weren't interested in helping me much either. They helped with testing and that was it. They have decided to treat all Vets with the disease and that's a great step forward for us, but they've got a LOT of improving to do. We can discuss that another time...

I highly recommend you take advantage of their offer and get treated. You're probably cirrhotic if I were to guess, since you were F3 in 99 and coinfected with active HBV. Get the C conquered and the B may be easier to manage as well.

If you have any questions, don't hesitate to ask. We have a great bunch here and you'll be welcomed by many others along the way. I'm glad you found us and look forward to seeing you destroy this beast. Semper Fi Marine.... Thank you for your service!

Cinnamon Girl · Guru

Hi Oldmarine, welcome from me too, I`m glad you found us! Thanks for sharing your story and concerns.

I know it must feel strange telling us these details, but rest assured that you are with friends here and we are here to help.

First of all, well done for giving up the booze and staying off it, that will certainly have made a difference in helping to slow down the progression of your Hep C. As for the herbal supplements, some herbs are considered to be beneficial for liver health, but no amount of herbs will clear the virus, the only way to do that is with a recommended and clinically proven course of treatment. If you`ve been offered tx (treatment) from the VA I don`t see any reason not to accept it, I agree with your wife! The usual advice though is that you would have to give up the herbs for the duration of the tx as they could interfere with the effectiveness of the drugs. I realise you feel that the herbs have been keeping you alive, but a course of treatment would give you an excellent chance of successfully ridding yourself of the Hep C infection for good and would offer you the opportunity of having a much better future, and to me there is no doubt which option I would go for. Which herbs have you been taking, out of interest?

Treatments have improved by leaps and bounds over the last couple of years with the introduction of the new DAA drugs (Direct Acting Antivirals), and as Syd said, the success rates are very high. Please keep in touch and let us know how you get on!

Other people will be along soon to greet you and add their comments.

Wishing you all the best of luck! smile

Sydhanrahan · Guru

Hi Oldmarine,

i got hep c in 1970 only instead of taking herbs I drank wine and went into denial.

About three years ago I went to a gastroenterologist who told me that my blood tests were not good but she didn't believe I would do well on Interferon. I didn't do any research, just gave up alcohol and decided that with a sacrifice that was the equivalent of losing an arm, I would be okay.

well I wasn't okay.,I thought the fatigue and nausea were just old age, but in the meantime my liver became cirrohtic and I was very sick. I live in Australia and got two of the three drugs from India for a twelve week treatment. they became available on the PBS here on March 1st and so I am getting a second round for $100 per month. I am virus free now but think that is to be expected. It's whether you relapse in the 12week period after treatment finishes that is the important thing.

i too had an appointment with liver clinic, mine was last month during treatment. They told me that my Meld score had gone from 13 pre treatment to 10 during it. The meld score must be over 15 in Australia to make a person fit the criteria for possible transplant. They advised me there that I should try to have treatment extended as I didn't have time to wait for another suitable drug if I did relapse after 12 weeks. I think the Meld score takes into account a fibro scan reading as well as albumin, and biliruben, and a few others.

Sorry, it has taken me a long while to get to point which is that your liver can be very damaged without you even knowing, and that today's drugs have a high success rate. Your wife is right.

There are very knowledgeable people here who can tell you a lot more about best drugs available for your genome type as well as offer really clear analysis of what your blood tests mean.

im sure they'll be along soon to introduce themselves. I just wanted to say a welcoming hi also I'm glad you found this site as it is about the luckiest thing that's happened to me (apart from being virus free, at least temporarily) for a long time.

Good luck on your journey. You will learn a lot here, not only about your disease, but also how inspiring it is to read the courageous stories of people who are experiencing the same things as you.

Syd

oldmarine · Newbie

Hello Members,

Newbie here looking for a lil advise. I am computer challenged at times and especially in new settings like this, but will try to get it right. I was infected with Hep C in Viet Nam in the late 60's. I have never been treated with drugs for the Hep C. VA wasn't especially cooperative with the costly and mostly unsuccessful treatments in years past, so I opted to try to stay alive with natural herbs, which has proven their worth, at least in my case, because I am still here 46 yrs, later. I was diagnosed in 1999 quite accidentally during a blood test after they knew what to look for. I was diagnosed with Stage 3, Grade 3 with focal bridging fibrosis, and other ugly things I can't remember without pulling out old biopsy from 99, but it was not good. Since the rate of relapse was so great, and so many vets dying, I elected to find and take herbs to defend my body until an acceptable treatment became available that actually treated and had some effect on 1a. I was diagnosed with hep C and hep B. Still quite active today. I went to Miami Transplant Center last year for consult, and they said I did not have the right ( meld score ) ?, and actually, they gathered six transplant specialist around me and wanted to know how I managed to stay alive this long, LOL. I told them herbs and no booze, and they said, well we don't believe that. So I was denied a transplant and went home with a business card and told to call them if I got " really bad". Well I haven't, so I must be keeping the Dragon at bay for the time being. So I thought I was doing pretty good, so I discontinued the herbs, and I fell flat on my face, with my alt and ast going through the roof. VL was about 3m. So I went back on the herbs about 6 months ago, and got my blood tests back last Friday saying that my ast was 44 and my alt was 42. They did not VL test, so that's unknown to me at this time. But having stated a lil history, I was informed by VA that I qualify for free treatment now, and to come in to start Sovaldi,?, but VA's record is deplorable with Vets, so I went searching sites like this one for advise. Other than occasional fatigue, occasional weight loss and substantial right quadrant pain from a very enlarged liver, I feel okay for a 64 yr. old. But with recent success's with therapy and new drugs, I was wondering if I should abandon my life saving herbs and give it a try. So many emotions right now, need some answers and thoughts on moving forward. My wife of 40 yrs. is begging me to give it a try. I think she just wants to harass me for another 10 yrs. lol. So without being repetitive here, I will end this post in hopes I can get some advise and thoughts about the latest drugs out there and if you think they have a chance of being successful in my case. I just started taking linisopril for BP control, and take oxycodone 5mg IR for body pain on a " only as needed basis ". That med is a double edge sword as it allows for a decent quality of life, but liver does not like it. Fortunately, my herb treatment keeps my body purged of toxins regularly, so I am able to tolerate it. Thanks for listening, this wasn't easy for me telling my story to strangers, but encouraged to read and listen to you folks as I like what I read in your posts, you seem to be so informed. Thanks for accepting me as a new memeber and I stand ready to read your words. Semper Fidelis !

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