Deciding when to start treatment

Thanks TM for your useful links to articles about TAF and increased lipid and cholesterol levels. I had actually spoken to several senior folks at Gilead about these side effects with TAF and none were willing to acknowledge a causality. So not sure if they didn’t conduct specific studies or are still in the midst of what’s known as “post-marketing” studies (done after a drug has been approved and becomes readily available and used by the public) which can takes years. So who knows, maybe in the future there will be papers published that talk about this situation. In the meantime, the use of statins is of course a remedy; however, statins come with their own host of side effects and issues. So I’m between a rock and a hard place since I can’t go back to Viread due to osteoporosis. Eating more of a mediterranean diet, losing 10% of my body weight, and exercising more are my only non-drug options. But even then, who knows if it will reverse my fatty liver disease? Only time will tell, and it’s worth it to see. Thanks again for sharing those links and keep us updated on your situation and what you learn. Always, Joan

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Actually, I was surprised to see my hepatologist include the lipid panel in my blood test after switching to TAF.

Indeed my total cholesterol went up from 160-180 to 204. I was on lacto ovo for many years and even my tryglycerides were down

Dear Jo thanks so much for your sharing your experience with statins. And your success in controlling your cholesterol and triglycerides. You didn’t mention whether you had any side effects such as muscle weakness when you first started the statin? I’ve heard from many friends who do not live with hep b, but are taking statins and experienced serious muscle weakness. That’s what makes me most nervous. And so glad that you had a 2nd opinion about your liver health – and that you do NOT have cirrhosis. Wow, what a huge mistake from your first doctor. Thank you for posting and please keep us updated. Always, Joan

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Dear Ccheng, so glad you shared your message since it’s clear that hepatologists must know that TAF has an impact on the lipid panel results and has to be monitored. Your cholesterol changes mirror what mine were. I was always around 170 before TAF, and now 2 years later am up to almost 220. I don’t know what lacto ovo is so it would be helpful if you could explain how it helps lower triglycerides? Thanks again and look forward to hearing more. Always, Joan

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Lacto-ovo- vegetarian. Means my diet consist of veggie, dairy and egg. Omega 3 will lower your triglycerides.

One of the key is to lower your ALT as low as possible. I once had fatty liver And my liver is cirrhotic ( swollen foot) I loose 10 pounds and stay on the elliptical daily. After 2-3 yrs my cirrhosis is completely gone. My Fibroscan came out normal. My lesion turn out to be hemangioma. It’s scare of my lifetime. Now my ALT is a good 17-19 range. I gained a bit of weighed which I find it hard to lose.

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Dear Ccheng, oh thanks for the explanation. I know that being vegetarian has a lot of health benefits and increasingly I’m choosing recipes that avoid meat for me and my husband. We both feel better and “cleaner” in that we’re less bloated feeling. I can’t completely omit meat since I do enjoy chicken and fish, but at least we’re trying with about 60% of our diet being “lacto ovo.” I’m amazed to hear that you were able to reverse your cirrhosis through diet and exercise, and I presume your antiviral. What a testament to the role of good nutrition in maintaining our best health! I had a scare 3 years ago when a baseline MRI scan showed a lesion on my liver and the hepatologist was uncertain if it was HCC. They weren’t too alarmed since they ordered another MRI in 3 months … but for those next 3 months I really wondered if it was time to get my affairs in order and start saying goodbye to old friends. But the lesion turned out to be a cyst that never grew larger over the following year (yes, I had an MRI scan every 3 months for an entire year!). So I understand when you said you the “scare of your life.” And finally, like so many of us, the covid pandemic caused many of us to gain weight. Good luck! I’m trying really hard, too. Always, Joan

Hi Joan, I don’t notice muscle weakness after I started the statin. Maybe because I walk every day and do weight-bearing exercise. Hope this helps to ease your anxiety.
thanks
Jo

Thank you Jo for your reassurance. I’ve begged my doctor to postpone a final decision for another 6 months so I can try to lose more weight and increase my exercise. Hopefully this will make a difference. Otherwise, I will start a statin and pray that I don’t have muscle weakness. Thanks again for sharing your experience. Always, Joan

I would say cut out most of food you eat that has carbs. If you eat rice and bread, I would cut that out. I think diabetes guild lines are to eat less than 40 grams of carbs a day.

I know it’s really hard but might be worth a try. A cup of rice has around 40 carbs. I seen on YouTube that carbs are the major cause of fatty liver. So if you are not highly active and eat 2-3 cups of rice, with other foods that contains carbs and sugar, it might cause fatty liver, even if you are not overweight. Not saying it’s the cause, but might want to look into it moving forwards if you’re going to change things up for fatty liver.

I try but I always seem to eat more carbs than I should daily. But the good side is I don’t eat as much carbs as I use to.

Thanks Neptune for your advice. I know that simple carbs are not healthy!! And I try to avoid anything white - white bread, white rice, white potatoes and white sugar (as well as brown sugar). But like most people, I have lapses in judgement and have to remind myself to eat more healthfully. The good news is that I’m fully vaccinated and have returned to Orange Theory (a circuit and interval training gym) where I can really burn off fat and calories. It’s been a year since I was able to return so it feels good to finally be exercising. I’m hoping that between increased exercise, more careful dietary choices that I will lose weight and also reduce my lipids. I’ve convinced my GP to give me another 6 months. Here’s hoping!! Always, Joan

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Benefits of exercising is huge! Even a 30 minute walk is great. If you can get an hour of walking in, even better.

Anything is better than nothing. Wish you the best!

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Hi Joan,
Before you start on a statin you can try any alternative medicine. In Bulgaria we have a drug called Profichol forte. This contains a special composition of red rice extract/ with standard contain of monacolin K phytostatin./ If you do not have this in US, just try red rice. It is well know to lower the lipids. Another product I would recommend is Omega Krill oil. You shouls be able to find this in your market. And the third one which is very popular in UK is Benecol/ with added plant stanols ester/.
I am sure one of those tree will improve your lipid status. My husband is taking the first- Profichol and his level are very optimized. Please do not start on statins. Beside all side effects statin play big role in depression too.
I hope this helps.

BR

Thanks Lili for your reminder about red rice extract which is something my husband’s doctor recommended when his cholesterol and lipid panel started going up. I’ll check with a trusted friend about credible companies that sell these alternative treatments. Although I avoid herbal remedies because they’re not regulated), I’ll at least do a little research about red rice extract (since some doctors do recommend iet before my next appointment just in case my blood test results convince my doctor (and me!) that I need medical intervention to lower my lipids. Always, Joan

am hepatitis B chronic patient and I know for 15 years but could me more than that.
1- My viral load decreases.
a) Jan,2020 was 53 IU/ML.
b) June,2020was 38 IU/ML
c) Dec,2020 was <20 IU/ML

Hbsag Elisa shows 97.5 and then 78.5
Hbsag quantitative >1000.
Don’t know the difference of the above tests. Hbsag quantitative and hbsag Elisa?

2-All this time the ALT and AST level was normal.
3- Alpha Feto protein was 9 then 15 and now 12. This is down from 15 to 12.
3-MRE shows MILD Liver fibrosis.

I feel dull pain under the right rib cage which goes when I take antibiotics.
I AM NOT on medications.
Based on this information, please advise on my condition.
Finally do I qualify for treatment?

Hi @Wadani1,

Welcome to the forum and the community!

Your results indicate that you are actually in a good state, with very low virus levels, only mild liver damage, and normal levels of the cancer marker AFP.

Because of your low levels of virus, you would probably not benefit from being on treatment anyway (which simply suppress the virus; you are already doing this naturally). The way forward would be to keep under monitoring so that you know if the virus flares back up and to keep an eye on your liver health.

With your dull pain in your rib-cage, this could possibly be your stomach rather than your liver. Antibiotics can irritate your tummy, cause indigestion or diarrhoea. Given your liver function test is normal, it is not likely to be hurting your liver or affecting your Hep B.

I hope this helps!
Thomas

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Thank you so much Thomas Tu. This was very helpful. Having chronic condition is a challenge before getting used to it. I routinely check my blood tests to monitor my status. Even though some of the result is hard to interpret or understand by a non medical person like me.
For example
HBsag quantitative showed >1000
While Hbsag Elisa showed 97.5 when HBV DNA was 38 IU/ML and again Hbsag Elisa decreased to 76 with the viral load became <20 IU/ML. Ideally Elisa decreases with HBV DNA viral load. They are correlated to my understanding. But hbsag showed >1000.
Is this two tests different hbsag Elisa and Hbsag quantitative? . Would love to understand the differences.
Thank you so much. Very helpful really.

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Hello everyone, i would like to say thank you healthcare workers and docs they trying to help us here first

I’m a chronic hepatitis b carrier since i was born and I’m living in U.S for 3 years now. I tried to join U.S Air Force but they didn’t let me in because of my sickness and i like to start treament but my doctor says only interferon shots can be treatment because DoD New Regulation says " History of chronic hepatitis b unless succesfully treated and the cure is documented. A documented cure for Hepatitis B is viral clearance manifested by Hepatitis B surface antigen negative/Hepatitis B surface antibody positive / Hepatitis b core antibody positive." But even I consider the potential side effects do you guys think its worth to try or is anyone here tried interferon shots before ?

Thank you everyone

If you are chronic hepatitis b carrier, chances of you clearing and not become chronic is very very slim. Like less than one percent probably in your situation. DOD does not accept chronic hep b is correct. Unless you need treatment, I wouldn’t get on medication at your age( seems like you’re younger) for life to try to get into the AF.

Definitely a great career move to join the AF, but I believe you should look elsewhere for a career.

No offense, but just truthful thoughts

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Thank you for your reply btw I’m 30 years old, AF carrier it’s not the only reason for me I want to protect my liver as well because when I searched about Hepb there’s more risk for liver cancer or cirrhosis after age 40 but liked I said interferon shots side effects make me concerned about this treatment

If it’s not a specific requirement for the DoD and the Air Force and it’s just for the purposes of treating HBV, then I have never heard that here in the U.S., you are required to take Interferon. Maybe I am misunderstanding what you are saying? Interferon is antiquated and I didn’t even think it was being prescribed anymore since Entecavir, Viread and Vemlidy have been manufactured.

I would recommend staying away from Interferon if it all possible. It has horrible side-effects for the majority of people. Especially since there are much better and newer alternative treatments now. Of course, you need to seek out a hepatologist (or a G.I. at the very least) to be diagnosed and advised on treatment.

All the best,

-Paul