As mentioned in my post, I do air frying, baking, boiling and less frying. Peanut have some oil but I don’t think it’s unhealthy. Nuts are healthy, just use moderation as your standard or guide. Best, Bansah1
2 Likes
The liver foundation in Australia has some recipes on eating well with liver disease: Recipes - Liver Foundation
I also put some up in this other thread and invite others to put theirs in too: Food, Activity, and habits alternatives guid
Maybe it’s also something that the Hep B Foundation or HepBFree could think about too (@chari.cohen, @RichardSo_HepBFree)?
Cheers,
Thomas
Hello
Andrei here new to the group. I’ve had hep b since I was 2-3 years old. I’m 38-39 now. I’ve discovered that I have hep b about 3 years ago.
So I’ve heard that antiviral drugs do not stop you from getting cirrhosis or cancer, all it does is slows down the progression. And eventually drugs stop working and cancer develops. I’ve heard from a doctor whom I talked to about antiviral drugs. The doctor has a patient who they are treating. That patient was on the same drugs, such as Vemlidy for about a decade and now they are stage 3-4 of carcinoma. I was shocked to hear that because my GI doctor told me that the drugs prevent you from getting carcinoma. Does not seem to be true. I’ve aso read online from many people that are on antiviral drugs that many of them have series long term side effects. Also if you stop taking the antiviral drugs that hep b will get worse and you could die. My GI doctor told me that too. So my worry is that since the medicine is so expensive, over 2k, and if I were to lose my job or insurance, there is no way I can afford to pay 2k every month. Knowing all that I decided not to take antiviral medications.
I have also discovered about a year ago that I not only have chronic hep b, I also have chronic EBV virus. I must have got it as a kid, went in dormant state and reactivated.EBV is Epstein Barr Virus. Also called mono virus. So EBV spikes hep b viral load, DNA. There is no mediation to get rid of EBV. I feel like this is it for me, going to be my demise . I don’t know what to do.
1 Like
Hi @Andrei,
Welcome to the community and thanks for your question. I am a little confused about your first 2 sentences: One, you state that you have had hep. B since you were 2-3 years old. And then your next sentence says you have discovered you have hep.B about 3 years ago. I don’t know which is which.
Anyway, for your question about antivirals, while you are correct that the current drugs do not guarantee that one wont develop cirrhosis or liver cancer, but they help reduce the rate. If the progression of the disease is slowed down immensely by these antivirals, then damage and inflammation to the liver will be reduced which will also impact the rates of cirrhosis and liver cancer. I have not known of anyone who has religiously taken their antivirals that have developed cirrhosis or liver cancer. But I know of people who will take antivirals then stop, restart and stop… and some developed liver cancer and died. So, I think the difference is taking the medicine as prescribed without stopping, compared to someone doing start and stop, start and stop with their treatments. I have been on treatment for 9 years now and my liver looks normal, cysts have remained the same and nothing negative is happening to my liver. There are people on this platform who have taken it even longer and don’t have any issues with cirrhosis and liver cancer. I am not sure who is giving you this information. It is worth pointing out that because it happened to one person does not necessarily mean it will happen to everyone with HBV too. There are so many factors or reasons why someone did and others did not. This is not something that is seen or observed across the board as you have suggested or mentioned.
Talking about side effects, I am not sure what antivirals you are talking about. Aside from TDF (Viread ) that has a rare problem with kidney damage and bone loss, Entecavir (Beraclude) and Vemlidy (TAF) do not have any long term side effects that have been widely reported. If you are talking about the first batch of interferon, yeah those had some bad side effects, but not the current 3 first line treatments.
I understand why you would not want to start treatment if access and cost is a problem. I think that is something important that must be considered in making this decision. The people I mentioned who died, were in this situation. They did not have continued access to their antivirals so they had breaks in their care where they will go months without having taken their antivirals. There lies the danger of causing severe liver damage and inflammation which increases the chances of cirrhosis and liver cancer. So I do agree, that if this is the situation and liver tests look good, then no need to start treatment right now until access and cost has improved.
I don’t know how Epstein Barr virus complicates HBV. This is also something you can talk to your doctor about.
I hope this is helpful. Thanks, Bansah1
1 Like
Hello Bansah.
Thanks for getting back to me.
I found out that I have a chronic hep b around 2021-2022 after doing blood work test for work so that insurance rates stay the same in my previous job. Prior to that I haven’t been to a doctor since I was a in High school. When I did the test in 2021-2022 my AST and ALT levels were 10 times higher than normal range. Then I went to GI doctor and we discovered I have Hep B. Doctor asked me if I knew how long I’ve had it. So I looked my original medical records from my orphanage in Belarus and sure enough it said Hep B 1992.
So I’ve had it for over 30 years without my knowledge until 2-3 years ago.
Thanks for explaining about what happens when stopping and starting the treatments over and over. Makes sense.
That is my worry is that if I start the treatment and then lose my job or insurance coverage, which in these days and times it could happen. And with high cost of living skyrocketing, no way I can afford it. My GI doctor is insisting that I start treatment asap. My ast level is normal now but alt is 89. Hep B DNA viral load is over 281,000 and that’s what concerns GI doctor.
Do you know or anyone on this group if hep b is untreated how long will it take to get worse? Another 20-30 years? There’s got to be statistics and data somewhere.
Thank you
1 Like
I am sorry to hear about your situation. It’s crazy when you have something but have no idea for all these years.
With the information and results you provided, I agree with your doctor about starting treatment. Your viral load is high. The higher the viral load the likelihood of liver damage increases. We will want your viral load to be low and stay there.
I understand your concern about insurance and work, can you ask your doctor whether there are other local or community health organizations that can support or provide the antivirals in your country? You definitely need to start treatment. Have this candid conversation with your doctor and see what he suggests. They might know an organization that could help should say you lose your job.
It’s a tricky situation, but your concerns are valid. Let’s hope you can find a better solution for this problem. Best, Bansah1.
1 Like
Hi @Andrei,
Thanks for sharing your story and sorry to hear about your struggles.
To address some of the confusion, antivirals definitely prevent liver cancer and liver disease progression caused by hepatitis B. This has been shown across many populations in different countries - the reduction is not complete, but around 80%. There are definitely some people still at risk of liver cancer even if they are on treatment, but the risk is much lower.
I agree with @Bansah1 in talking to local groups about getting access to affordable treatment. If you are in the US, there are also ways of accessing affordable antivirals through cost plus drugs - Possible side-effects from antiviral therapy - #129 by PuallyHBV
3 Likes