Deciding when to start treatment

This thread is to discuss issues around starting treatment (when, how, which meds, etc.)

TT

Mod (TT): moved from the Introduction thread, originally a response to this post

Hey Johnny,

I was born in South Korea and had vertical transmission of HBV (passed to me from my mother while in the womb).

Glad you made it onto this forum. I just wanted to encourage you to seek out treatment if you get to the fibrosis stage of CHB. I was so worried about getting treatment, that I waited too long. At first, I kept putting off treatment because it was back in the days when Interferon was the only real choice. But then, I kept putting it off to progress in my career, even when there were newer better options. I waited till I found out I had cirrhosis and then had really adverse reactions to treatment.

Obviously, you want medical guidance from a hepatologist, but take treatment seriously, if they suggest it. Thomas can speak more on treatment resistance and the like, as I don’t know much about that. I do know that once you start treatment, that you are supposed to stay on it for life or until they come out with a cure. I don’t know much about building up a resistance to treatment over time; I sure hope that is not the case. However, you don’t want to wait till you have cirrhosis, like I did. I could be living a much better lifestyle if I had started treatment much earlier; or so I believe.

Best Regards,

Paul

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Thank you for your response. So far no treatment is required. I see hematologist every six months and my dr once or twice a year. I m going to get blood work done this month, so I m praying all will be well.

Could I ask, how long did you put off treatment when recommended and how you are doing with treatment? I hope all is well for you currently.

Are you in the US or in Australia or in another country? Are you on hepb connect? I just found out about hep b connect that Thomas is moderating this week through these emails.

Hopefully we can continue to communicate and thank you again for your advice and sharing your experience.

Johnny

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Hi guys,

I thought a new thread for this important topic was warranted. Just addressing some of the issues brought up:

  • There are guidelines given to clinicians about when to start treatment, but these are changing all the time as we find out more about the virus (and as policies change about government reimbursement, etc.). The guidelines are here from the American Liver association, the Asia Pacific liver association and the European liver association. They’re all slightly different due to different populations in each area.

  • Drug resistance from new drugs (vemlidy/tenofovir and entecavir) is very rare. Almost no cases of any hbv resistant to both. @MarkDouglas could possibly offer more advice on this.

  • There is a growing movement to select some specific patients who respond well to stop treatment after a long period. This means there are some cases where treatment is not life-long, but we still need further research on that.

  • Whole-heartedly agree that you don’t want to wait until cirrhosis to start. Any raise in ALT levels should be considered for treatment.

  • Treatment isn’t that bad, I am currently taking tenofovir myself. A daily pill (that is generally safe and does not cause side-effects in most people) is so much better than what was available before. Just 25 years ago (before lamivudine was approved), you had to inject interferon every week or even daily and feel like crap from years on end with only a poor chance that it result in a good response.

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Does anybody know the average age of people being treated?

I don’t know if there are any stats on this, maybe some @HealthExperts can bring in some of their experiences.

I have the feeling that many people are in their 30s and 40s when starting treatment, but there probably a very wide distribution just because these very effective drugs have only been available very recently (e.g. Entecavir was only approved 10 years ago by the FDA).

TT

Hey Johnny,

Although I knew I had HBV my whole life, I had no clue what it really meant for my life until I was in my late 30’s and started exhibiting other medical issues. I have had 4 different hepatologists since. The first one was my main one for many years. He never insisted on treatment and understood that I didn’t want to disrupt my career by taking Interferon. I put off treatment about 8 years during the fibrosis stage.

At one point, I had to change insurance companies and was with Kaiser for about a year or so. They did a biopsy and told me I had up to 5 years to live. That was back in 2007, so it would seem they didn’t know what they were talking about.

Oh, I am in California, USA by the way. I am on the hblist and hepbconnect. I responded to your post that you put on hepbconnect though.

As to how treatment is going. It definitely helped with the viral load. Before I started treatment in early 2017, it was over 3 million. Now it’s around 100. So my specialists are enthusiastic about that. The problem is what happened to me after starting treatment. I just explained this on another thread that Thomas has about Covid if you want to read it. After the initial horrible reactions that I had to Vemlidy, ever since, I have struggled with abdominal issues, GI flare-ups which is 8.5-10 pain from the liver to the ummm… exit. I lost over 35 pounds within the first month of being on Vemlidy. I was 5’9” and about 185 lbs. and had a good amount of muscle. Now I am about 155 lbs but have lost a lot of muscle and have a hard time growing it. At one point, I had dropped down to 138 lbs. and had to go to the ER because I couldn’t eat and also was in so much pain.

My third hepatologist which is the one that started me on Vemlidy would just prescribe me pain meds, one after the next. Most of the time, those pain meds would just make me bed-ridden and feel even sicker. Sometimes, I literally thought I might be dying just from the meds he would give me beyond the Vemlidy, which Vemlidy was already doing enough bad to me. I have a new hepatologist as of about 2 months ago. So hopefully, she can figure out why I am reacting so badly to treatment. She changed me to Entecavir, thinking that a completely different class of drug may not cause such bad reactions from my body.

It’s great to hear that you do not need treatment yet. At this point, be very cognizant of living a healthy lifestyle. Since you don’t need treatment yet, you may be able to use exercise, healthy food, etc. to stave off needing treatment for longer. I think my situation and reaction to treatment is not very common at all. None of my specialists had experienced such reactions in any other patients. However, I have seen and heard of other people that have had issues with treatment on the hblist and Hep B Foundation conference. So it’s not unheard of but very uncommon as far as I can tell.

We are all in this together. When I first found the hblist, it was such a moving experience to connect with other people that were suffering with the same thing I was. It made me feel less alone and like I wasn’t just crazy and all this suffering wasn’t just in my head. But beyond that, it’s nice to feel extra kinship because you are from Korea and live in the U.S. like me. I hope I have answered your questions thus far on a personal level. Thomas is great at responding to technical or scientific questions and also trying to refer to medical specialists on specifics that he doesn’t have expertise in. I really appreciate his knowledge, expertise and way he communicates information. Plus, when he doesn’t know something, he just lets you know or provides links to references, etc.

You are in good hands here on hepbconnect so be encouraged to ask your questions on different threads and know that you will get response not only from lay people like me that are dealing with the same disease as you, but from knowledgeable experts. BTW… Thomas is not ‘only’ a scientist but also an HBV sufferer. So that makes it two-fold when you get a response from an expert that also deals with the disease himself.

Wish you the best,

Paul

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Hey Paul,

Wow! You sharing your experiences is really helpful and great insight. We are probably similar in age. I m 43, and most likely had it most of my life since I came here when I was 7. I found out in my late 30s. About 4-5 years ago. Before that, I did even know or thought about hep b or any other diseases. Even when my wife was pregnant, they tested her and no alarm, although we been together for years before.

I live in MD, the other side of the country. One thing about not being on treatment is, you know it could just be one visit away. It’s like playing musical chairs and just waiting for the music to stop. I had 2 liver/gastro specialists. First one was good, and came recommended by my primary. But I switched to someone closer to my home and bigger and better office. But might or might not be better. Because I am not on treatment and results meet the hep b observe criteria, my visits are with the PA and is usually quick bc nothing is “wrong”. Hopefully it’ll stay that way.

I am e negative, so i was told my low count and normal liver level makes it inactive carrier, but e- also makes it wild type and is a more aggressive type. I been eating healthy and only concerning condition I have is I get itchy when I get hot or sweaty. Usually goes away after cooling down, time passing or taking a Benadryl. It’s not often, but it happens. And also when I get stressed. I googled it, it says it could be some other condition people without hep b also has, but I feel it’s definitely something with my liver disease. Just got a fibrosis scan for hep b, getting blood work next week and UT by end of month. Then it’s to my doctor.

Hope it goes all well. Glad to hear your doing well on your new treatment. I read velimdy reviews online and many if not most had negative reactions to it. I saw a quote that read, if your depressed your living in the past, if your anxious your living in the future, so live in the moment. Trying to practice it and become a better person.

Thomas is very helpful and I m grateful for him moderating this site. What he is doing is truly great and I tip my hat to him. Thank you Thomas for your efforts. Thanks Paul for sharing.

Johnny

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Wow

I found out last two weeks I was positive and I did my viral load test which came out yesterday
I spoke to a doctor whom suggested that I do not need any treatment
But I’m still scared because i do not want it to increase

Dear Johnny and Paul, thanks for your kind words. Also thank you for connecting on here and discussing your situations so openly. This is exactly why I set up the site in the first place and it’s really rewarding for me to see people supporting each other in this way.

Hi Oluchi, I’m sorry to hear about your situation, but know that you are not alone here. I have started up a new thread here and moved your other post there, because I think this is an important topic that many people go through and should be able to find easily.

Just got my ultrasound sound results and the reading sounds…well not good. The findings reads

FINDINGS:
LIVER: Diffusely increased echogenicity of the hepatic parenchyma, compatible with steatosis. Focal fatty sparing in the gallbladder fossa. Mildly coarsened hepatic echotexture. The liver is normal in size. The liver measures 14.2. cm. No discrete liver masses are noted.

IMPRESSION:
Diffuse hepatic steatosis. Coarsened hepatic echotexture without sonographic evidence of cirrhosis. No suspicious hepatic lesion.

I feel this will lead me to a dark road, maybe earlier than later. I know once the coarsening begins to happen, it’s irreversible. Got this results today from last week’s ultrasound. I m going to set up an appointment with my liver doctor next week or after Christmas I am freaking out. My loads have always been below 600. And alt and ast normal. Sometimes high end of normal or one or two above normal range but nothing in 2x or so.

Is this something that will put me on treatment? Does anybody has any similar experiences in the past.

Thanks

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Dear Johnny,

I would not be too pessimistic, there is plenty to be upbeat about in fact:

  1. No tumours or suspicious lesions

  2. No cirrhosis

  3. Mildly coarsened hepatic echotexture” possibly means limited fibrosis (which is reversible), but could also be due to the fatty liver (which is also reversible) and/or inflammation (generally short term).

These results may suggest that you should consider treatment, but that is something that you and your health care provider to discuss and decide together (a decision not based only on your health, but how it fits into your life and makes you feel).

To give you the full picture of things, I am on tenofovir (a generic). It is just a daily pill and I don’t experience any side-effects at all from it. It’s just something I take with my food, and really wouldn’t be much different from the supplements you are already taking. This is only my personal experience, so take from it what you will, but it isn’t really a huge imposition.

Cheers,
Thomas

It’s frightening to see these results especially with underlying conditions.

Thanks Thomas, for taking the time to share your knowledge. It’s awesome to have a forum where we can share our medical conditions and not just in the dark with Dr.Google. Lol.

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Question to all:

According to many studies found online, the requirements for when to be put on treatment seems mainly based on hep b virus level, age, and alt and ast liver level. What about liver fibrosis score or steatosis score? How does these score play in all the treatment or no treatment?

Seems like fibrosis score can go up and down according to blood test. Same with steatosis scores. So how do they play in all this?

Fibrosis definitely plays a role: if you have a fibrosis stage 2 or above, guidelines recommend that you should consider treatment.

Steatosis in general doesn’t figure into it.

Thomas

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Hey Johnny,

Sorry for the late response. Itching can be a symptom of liver disease. I generally have mild itching unless I take certain meds or my liver is having a hard time getting rid of toxins, then eventually it will come out through your skin, if your body can’t find another method to get rid of them.

I also have adverse reactions to heat. Anything strenuous or overdoing activity can cause me to be sick. Let’s say I am active all day one day, I know I will be paying for it the following day or two. Sweating much is a good sign that I am going to have issues.

Even though we live in the U.S., I wonder if we are such a capitalistic nation that big pharma controls the medical industry. Many of the doctors I have had, seem to either not have enough knowledge about CHB or lack the capability to approach the disease from the patient’s point of view. Often times, they blow off my symptoms and suffering as long as the viral load is low and the AST and ALT is within limits. Yet, they don’t do much or barely listen to all the other issues, especially quality of life issues.

Again, I am at the cirrhosis stage and didn’t start treatment until I was in this stage so this may have a large impact on the side-effects/reactions I have. So finding and keeping a great hepatologist is tantamount to receiving the quality care that you need now and in the future. Great communication and concern for your entire being (physical, medical, mental and emotional) are qualities that are hard to find in even the highest touted doctors as sometimes their egos can really get in the way.

-Paul

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Hello Paul,

No worries. :slight_smile:

You are right about many doctors knowledge of CHB. It’s just if you fall under/over requirements of treatments, then they will put you there or not. And the medicine is just textbook prescription. I guess with a day or two google searching, one can be knowledgeable in patient treatments for hep b as many doctors are. Maybe they have some top secret medical journal on hep b. Lol.

I hope your condition is stable, and stays that way. Thanks for taking time to respond. And with about 2 weeks left for 2020, we all made it through this nightmare year!!!

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I don’t know if it’s only a thing with being a capitalistic nation (though the medical insurance system there in the US bewilders me from over here in Australia, where we have universal health care); I think it is more that lab numbers are much easier to interpret and respond to than symptoms. The system is also limited in that the treatment/screening guidelines that are set down are based almost entirely in these lab result numbers. So often it is such that doctors either don’t know how to respond to these symptoms or in the end can’t do anything about them.

Personally, I would like to see the guidelines changed so that anyone with HBV who wants treatment can get treatment (rather than now where they have to have increased ALTs or fibrosis to be even considered) so that there is a bit more leeway and freedom for patients to consider starting.

As a second point, I think the influence of pharma is a complicated issue. On one hand, there definitely has been instances where pharma has driven negative impacts on public health outcomes and been engaged in some seriously anti-social behaviour against the public good. On the other, we need pharma to enable scientific discoveries to reach the marketplace and actually get them into people to help them.

The good news is that the culture within pharma is definitely changing and there is way more public/patient engagement than there has been in the past. As such, I think it is a great time to enable our voices to be heard and raise particular issues that we would like addressed.

Agreed!

Thomas

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Can anybody share how much anti viral meds are? I saw on one YouTube video on hep b lecture that it’s like $43USD per pill. Treatment is like $14k a year and $170k for ten years. And generic is only $2 dollars cheaper than the brand name meds.

That’s just wow! Medicine seems unattainable for many, when they need treatment. Just seems like anything related to hepatitis B is negative.

I remember a year or couple years ago, some company jacked up prices on their hiv or aids meds to 200% and it was like $250 per pill, where the pills were prescribed to be taken everyday.

I guess insurance could help out the cost, but if you lose your insurance, you’re going to the poor house or your going to be medical screwed… it’s just crazy

Hey Johnny,

I don’t know true out of pocket cost without insurance. I have insurance but when I was on Vemlidy, I know the insurance was being charged between $1000-$1200 mostly and sometimes more per month. It would fluctuate from month to month but was mostly in that range.

I am currently on Entecavir and don’t know the monthly cost yet.

I know the Vemlidy I was on wasn’t generic. I don’t know yet if the Entecavir I am on is generic but think it is brand name so can’t speak to cost on generics.

-Paul