Chronic HepB

David, 2 of them were hepatologists and 1 was a GI doctor. I was skeptical when the GI Doctor said it first, went for second opinion with hepatologist, same thing. Last one, same thing and he's been the best one getting me on clinical trial and such and also one of the top doctors from the hepb.org site.

Good thing you had a couple of hepatologists looking after you.

I'd wait a while before even thinking about drinking. I wasn't much of a drinker, but I do miss a glass of good wine with dinner. It just isn't worth what might happen. Plus, alcohol is expensive.

Hey D, I'll have to respond with some stuff here on what I have learned about Hep B the past year.

Your Viral Load doubling in a month is not good. If the pattern continues, it will double each month. Your first line of defense should be Tenofovir TDF (aka Viread).It's the most potent for treatment. It does have a 7-10% cure rate too. FYI, even if you go undetectable on any med on Hep B, you are not cured. You still need to "seroconvert". It means you need to develop the antibodies to protect against Hep B. That's the difference between Hep B and C and what makes B more challenging to find a cure.

However, you need to make sure you have strong kidneys to handle Viread. Also, it's optimal to have your Vitamin D levels between 70-100 to start this medication.. and stay on a strong dose of Vitamin D, as Viread can mess with your bones (though 99% of Hep B patients, it does not) as well.

If you're kidneys are not strong, then your next line of defense is Entercavir (aka Barraclude). It's not as potent and takes longer to work, but probably has less side effects. Ideally, since your case is probably a chronic case (otherwise, the viral load would be high and then decrease each month), these should be your only 2 choices for meds. Either way, you would probably have to take these meds for a life time. But, they are talking about taking these meds for 2 years, knocking down to undetectable and then adding on PegInterferon for a year to clear it. I read it's a 91% cure rate that way, but the side effects can get bad on Interferon treatment this way.

As for your Hep B eg - negative score. Means nothing. You need the other results to determine where you are at. I refer you to this link:

http://labtestsonline.org/understanding/analytes/hepatitis-b/tab/test/

Check the bottom and it gives you more info about what each thing means. It's more than likely you are just like me, carrier state with low risk of liver damage but with some sort of mutant in you. This is also the least infectious of Hep B, so unless you're having a lot of dirty, unprotected sex or sharing dirty needles with people, you won't infect anyone. But if you do live with anyone, it's safe to get them tested too and if they haven't had it, get them vaccinated.

Also, as far as your ultrasound results... it's great you had it done and they found nothing. However, with Hep B, not much shows up on an ultrasound unless HCC is found. In order to determine if you have Firbrosis or Cirhossis you absolutely need to get a Fibrotest and Fibroscan done (Fibroscan is the new alternative to liver biopsy -- not everyone has it). I'm actually surprised your GI doctor did HbSAg in Quantitive. This is very hard to find in the united states. Also, did they test what Genotype you are? This is actually pretty significant. Genotype A and B, can actually be cured easiest with the meds + interferon treatment. If you have C, you have higher risk of cancer. Genotype D and I believe E, are less infectious (I'm D by the way). This can also help your doctor determine best course of treatment.

I'm glad you trust your GI doctor. I trusted mine who wanted to watch me for 6 months and then a year, and kept changing answers on me to get my mind right. That's when I stopped trusting him and went on my own to find a Hepatologist, and then a second Hepatologist for another opinion and eventually treatment. A lot of people on this board pushed me to go see a Hepatologist on top of my GI doctor. After much research, I was glad I did, as if I followed my GI doctor's orders then I think I would not be standing and as active as I am today. I could have even been on my death bed today!

Hope I am able to help here, D! I've done so much research on Hep B over the last year that I feel I actually know more than the doctors lol. Also, expect the cure drug to be out between 2-5 years from now. It will either be ARC-520 or REPLACOR... so get ready for us Hep B folks to join Hep C folks in a cure.

Also, I'd like to offer some advice. Stay active, exercise as much as you can. Don't let this virus consume you, like it did me lol

Post Edited (luckyman316) : 7/15/2014 9:47:10 PM (GMT-6)

Having had bunches and bunches of all three imaging techniques, I'm happiest when they set me up for MRI studies. US and CT certainly have their strong points, but dynamic-contrast-enhanced MRI is the best for hepatic lesions and diffuse diseases. With a really good radiologist coupled with advanced MRI equipment/sequencing methods they can even pickup the very subtle fibrotic reticulations in the parenchyma and/or heterogeneous perfusion effects. This perfusion effect can be very pronounced in PSC disease for instance and I can actually see the disease progression in my own MRI sequences that I typically get every 3 months or so. I'm sure my insurance company isn't as pleased as I am though.

Yes...very helpful. Thanks Luckyman

For a long time, I was having an ultrasound, CT scan and MRI; each was 4 months apart. After several years, I asked my docs to stop with CT scans. Too much radiation. They agreed and up until this year I had 2 MRIs a year. A couple of months back, I had my final MRI. Of course, should anything pop up, it'll be back to MRIs. I refuse to have any more CTs. As it is, I had an abdominal X ray everyday after my transplant. That was 11 days, along with a couple of CT scans and several MRIs. My new liver probably glows in the dark.

Luckyman,

Definitely hit me up for an iced tea.. I actually read somewhere that small amounts of caffeine have been found to be beneficial.. I will see if i can find the study. By the way there is more caffeine in tea than there is in coffee.

All children are vaccinated at birth for hep B now.. Both of the boys got the first shot on day 1 of birth and have completed the series. That was the first thing I checked!

I don't know much at all about Hep B, but find this thread very informing and interesting. Thanks for keep it here for us all to see, but also those who follow you. Big Hugs

D...it is okay to lurk, but do post when you have news or questions...we are here to support and help.

Good that you checked the supplements and vitamins with your doc...some self medicate and liver disease is tricky....things don't mix well in many cases!

Glad you are doing pretty well.

Hugs,

Mama Lama

Danny (Funny, that's my name too! You sure you aren't my Doppleganger?)

Thanks for the update. Saw you posted on the other board too with questions. I'm sure you will get great answers there. You probably won't get a quantitive test here in the USA, just qualitive. Actually, they may take the test in the lab but won't give you the results. I believe the FDA doesn't allow it to be available to patients in our country. Pretty silly if you ask me!

As for the interferon, your doctor is probably paid by the drug companies to push for you to take these first. Ideally, you want to do this anyway so you go undetectable before any intereferon treatment. Your doctor is right in her worries about the side affects. Some patients can handle it better than others. This is why they are reluctant to do anything, plus there are times when it actually does not work and you're doing it for nothing... there's a lot that comes into play with it, Genotype possibly being one of them (A & B are easiest to clear).

I, myself, am playing the waiting game. First thing is first, going undtectable (I had a blood draw on Monday so hope that's the one) but with ARC-520 possibly being sped up, I may opt to go that direction before wanting to experience any horrible sides of interferon.

As for not being medication, it really depends. If the virus is not moving up and below a certain DNA level, then yes, they may just opt to watch you every 6 months instead. Hope you get other great answers as well. Also, keep in mind, it doesn't hurt to rule out a second or even third opinion!

D, it is scary the common stuff we have. Curious to learn your genotype. I suspect, since we have so much in common, it will be D.

Good stuff on the exercise there and your doctor is looking out for you, which is great! Depending on your scores, an MRI may not be needed... nor will a Fibroscan, but again it depends on your scores.

All doctors in the USA will follow the AASLD Guidlines. I am curious to see if you get the quantitive test. Let us know as that is HUGE if you do.

As for your supplements, if you do end up getting on any treatment, be prepared to stop most of those supplements except the Vitamin D3. There are other supplements you can take though that help the immune system and the liver. Just to give you an idea of what I take daily:

Vitamin C 1000mg
Vitamin D3 10,000 iu
Vitamin K-2 200mcg
Zinc 50mg
Magnesium 250mg
B-12 1000mcg

All this on top of a daily ensure drink (Ensure Complete) and a One-A-Day Vitamin

Also, lots of fruits and veggies will go a long way... shoot for the organic stuff.

Keep us up to date on your results when you get them. FYI I may be in the Boston area in December.

Lucky,

I figured I would have to stop the milk thistle but the chlorella and the spirulina are good food supplements packed with Vitamins. If you do some research on them all of the vitamins you listed are in them.. The brands are

Sun Chlorella - chlorella
Hawaiian Pacifica - Spirulina

They are single cell algae one is a pill form the other is a powder...not the greatest tasting but I make an all natural fruit smoothie with the powder

I usually get 5-7 servings of organic veggies and fruits a day.
My father and my father in law both have gardens in the yards. So i usually don't buy any veggies... Fruits I Usually go with strawberries banana mango peaches pears and oranges.

Funny I was thinking the same thing on the genotype. I am almost certain it's going to come back as D.

Let me know when in December you will be up... If time/work schedule permitting would like to meet up for a coffee or tea in your case!!

What have your sides been on the Tenefovir if any?


Hi Miz!!!!!!!!!! 😀😀😀😀😀😀

D, all those fruits are delicious. I'm a big fan of fruits. I never was a fan of veggies but I've grown to like them. I've been told to eat what I also enjoy eating as well on top of the fruits and veggies. I do end up eating lots of chicken because of this, which isn't a bad thing :) Most of my fruits are berries. Strawberries, Raspberries, Blueberries, Blackberries, etc. But I thrown in oranges and apples and such here and there.

If you do have an option for meds, shoot for Tenofovir. It's the most potent of the meds and should have the least side affects. Barraclude (I was given this option as well and chose against it because it sounded like a shark lol) supposedly has bad long term affects, and has been linked to some cancers. You can worry about Peginterferon later, but I suspect a functional cure will be out before you even need to consider this.

As for sides, the main sides came at the beginning. Nausea, some slight dizziness, diarrehea and change in some stool colors. All of it went away after about 2 1/2 weeks though. Nothing long term stuck with me, but there are days I do get a little more tired in the evening than I used to. Nothing I can't handle though. I take mine at 8pm this way I'm usually home and can go to bed earlier if needed. If you get a chance to go on a clinical trial TAF vs TDF then do it, the meds are free... I did this and am so thankful I went this direction!