Deciding when to start treatment



Those are some of the tests

Also the that is the treatment the Dr put me on. Emtricitabine and Tenofovir Disoproxil Fumarate 200 mg / 300 mg

Hi @Marlos1993
Am sorry you are a bit distressed on the little information at your disposal on whether to proceed with the treatment or not. The situation is abit complex now that you have already taken some pills which makes me form an opinion that your concerns has shifted from that of starting treatment to that of discontinuing treatment. Am I right?
Moreover, this group has a rule which prohibates one from given advise on an area outside his/her speciality. I definitely know our experts will be in handy anytime. Meanwhile, according to AASLD hep b therapy is recommended for those whose viral load is 2000iu/ml and elevation of more than twice of ALT - ULN(men 35 iu, women,25iu) forHBeag -ve or DNA of more than 20000iu/ml for HBeag +ve.
EASL recommends treatment for anybody with elevated ALT and viral load of more than 2000iu/ml positivity or negativity of HBeag not withstanding.
If you have ultrasound results it’s important to know if the liver has any damage and fibroscan to evaluate any fibrosis/cirrhosis which can neccesate a different approach.
Hope that keeps more informed.
Regards
Kinoti

Soon it will be holidays will go get the scans done.
On starting treatment just drank my first pill yesterday before I joined this forum of experts…
Also did you see meds I posted that I was prescribed

Yes, I have seen them and they are ok. Infact tenofovir is among the best because of it’s barrier to resistance.
My advice is, don’t take the second pill until our experts like@Thomas @Chari Cohen @tavis etc give you their views. To me you don’t meet any criteria for treatment unless on that condition where it’s advised by some school of thought that all positive for chronic Hep b to be on treatment.

1 Like

Also interested in what members think about OP thread about has the hepatitis b medication also could lead to end stage liver failure.

Thanks for posting the link Mario

Hi @Marlos1993,

Thanks for your question and welcome to the forum.

I understand you’re feeling quite stressed at the moment and wondering what to do. In general, you should defer to your doctor’s health advice because they are the ones that have examined you and have made a decision based on your situation. This forum (and the messages from its users) should not be seen as medical advice. Importantly: you should not stop taking this mediation until you have talked to your doctor.

Your doctor has seen that your viral load going up and is justified in considering treatment based on that. There is not necessarily something magical about the 2000 level specifically, but it is a guideline based on scientific studies that showed that it was a handy value to rule a line. There may be a thought about practicality: whether to treat now or pay for another test a few months later to confirm.

Tenofovir is a safe drug and people generally do not suffer any side-effects from it, so you shouldn’t worry about taking it.

However, it is a bit worrying that you have been prescribed Tenofovir Disoproxil Fumarate and Emtricitabine. Emtricitabine is an anti-HIV drug and doesn’t affect Hep B at all. This formulation is known as HIV PReP, which is taken to prevent a HIV infection if an intimate partner of yours is HIV-positive. If you are not in this situation, you should raise this with your doctor to confirm if this is the right medication (given you are HIV negative). That said, it should not be a worrying thing to be taking as it is taken by healthy people (without HIV) all around the world, so is very safe.

Hope this helps put things into context,
Thomas

1 Like

That was also my worry I asked him he said it is fine. Though I am not in that sirltuation.

It’s great to have this forum and thanks to everyone’s input/insight especially @ThomasTu and @Joan_Block !!! I’d like to get some input from the experts here whether to start treatment. I’m in my late 50s, and had it for a long time - maybe from my mother (she’s in her mid-80s). My primary doctor said no treatment just yet, but I’m worried about the DNA load increase. Below are recent test results:

AST (SGOT): 20 on 11/30/2021 26 on 04/20/2021 IU/L (0-40)
ALT (SGPT) : 22 on 11/30/2021 28 on 04/20/2021 IU/L (0-44)
HBV Real-Time PCR, Quant IU/mL: 7,660 on 11/30/2021 5,310 on 04/20/2021 IU/mL
(in 2018 HBV SuperQuant was 400 copies/ml, the lab changed measurement unit to IU/ml in 2019 when it was 3230 IU/ml)
log10 HBV IU/mL: 3.884 on 11/30/2021 3.725 on 04/20/2021 log10 IU/mL
AFP, Serum, Tumor Marker: 1.5 on 11/30/2021 1.7 on 04/20/2021 ng/mL (0.0-8.3)
Hep Bs Ag: Positive
Hep Be Ag: Negative
Hep Be Ab: Positive

Ultrasound in April 2021:
Gallbladder: Normal. No gallstones.
Bile Ducts: Nondilated. Common bile duct measures 0.2 cm.
Liver: Normal.
Spleen: Normal.
Pancreas: Normal.
Aorta and IVC: Normal.
Kidneys: Limited survey imaging. Right kidney measures 10 cm. Left kidney
measures 9.4 cm. No hydronephrosis.
Other: No ascites.
IMPRESSION: Normal examination.

Thank you again!

I would have waited. Like Thomas, states it’s not a magic number but guidelines. Unless he has done studies, you seem healthy and might have been a little jump before going back down. I went from 300-600-1000-400-300 in the last five years.

I would have waited at least 3-6 months and went for test 3-6 months. Once you start treatment it seems like a lifetime. So that’s pretty scary.

1 Like

This sort of increase isn’t very high and could just be due to natural fluctuations. Your doctor may be keeping you under monitoring to see if it represents a real increase or just a blip.

Hope this helps,
Thomas

Thank you very much for your reply Thomas! So should I start treatment now or continue monitoring? I live in the U.S. and it seems not many hepatologists around possibly due to not many Hep B patients. However I could drive 60 miles to a top medical school affiliated hospital and see an expert there. Do you think it’s worth the drive instead of seeing a gastroenterologist?

1 Like

Dear @LetsCure,

I’m not a clinical doctor, and so I am not qualified to provide medical advice.

If it makes you worry a bit less and if you feel like you’re not confident in the care you’re getting at the moment, you should consider going to someone who specialises in HBV to see their opinion of your case.

TT

Than you again @ThomasTu !

Hi @LetsCure, since you live in the U.S. you can check out the Hepatitis B Foundation’s Directory of Physicians (Liver Specialists) by State and even city. Although we don’t personally interview each of these doctors, they complete a simple survey with a focus on whether they are knowledgeable in managing and treating hep b patients. As far as treatment or not, your lab values don’t necessarily make you eligible according to the U.S. treatment guidelines because your ALT values are not elevated. But if you have any family history of liver cancer (or deaths due to liver disease), then your doctor might suggest treatment even with a “normal” ALT level. Otherwise, I agree with what Thomas has said. In the meantime, I hope you can find a doctor whom you have confidence in !! Always, Joan

1 Like

@Joan_Block Thank you for your explanation!

Joan, thanks so much for that idea. I think I might have talked to Dr. Gish 25 years ago when we first learned of the diagnosis. I will definitely pursue that option! I would also like to say the Hepatitis B Foundation (and PKids, and you) have been a lifeline for my family all these years, when pediatricians and hepatologists knew very little about chronic HBV in children. (IMO that is still often the case.) I brought copies of info from those organizations to pediatricians before there were established national/international standards. So thanks for your part in that - it has made such a difference!

1 Like

Thomas, thanks so much for those thoughts, and for raising other factors to think about- I’ve been so focused on the standards that I didn’t really think about those. When searching for insurance coverage for my daughter I discovered that insurers’ formularies pay 100% for TDF and TAF if they are for prevention of HIV, but if prescribed for HBV, they are really expensive, even after the max $5000 manufacturer’s coupon (for vemlidy). Or they require step therapy starting with entecavir. I found one insurer who has a reasonable copay for Vemlidy, but not TDF. It’s almost like they don’t know those drugs also treat HBV. I’m trying to figure out how to address that with regulatory agencies.
Thanks again for your helpful response.

1 Like

Kinoti, thanks for your kind words and understanding. It is certainly true that being a parent is like walking around wearing your heart on the outside!

1 Like

Hi @ebab, thank you for your kind words and I’m really happy that the Hepatitis B Foundation was helpful to you when you needed information and support. Just wanted to let you know that TDF is now available in generic form so should be cheap and covered by insurance! Also, TAF or Vemlidy has a co-pay coupon program for patients. The toll free number is 1-877-627-0415 or you could check with your daughter’s physician as well. I’ve been part of the program for the past 3 years even though my husband has a good prescription plan! And so glad to have you joining this forum since you have a unique perspective and insights as a parent. Always, Joan

2 Likes