Hi all. I have a daughter adopted as an infant from Asia, now in her mid-20s, with vertically transmitted hbv. She has asked for my advice on whether to start treatment. Her hbv followed the usual course until age 13, when she suddenly developed surface antibodies and her DNA level dropped from the millions to the hundreds. Two pediatric hepatologists declined to start treatment because they said she would clear it- which she of course didn’t. The surface antibodies eventually disappeared and her DNA increased again. She lost the e-antigen and gained e-antibodies around that same time, which have remained stable.
In the past three years, a liver biopsy and ultrasounds have been fine, ALT has fluctuated every three months between 32 and 38, and her DNA from 2000 to 34,000 (most recently 3000, down from 34,000). Her current hepatologist said she could start treatment “if she wants” based solely on the ALT, DNA, and the 3 year old biopsy.
I asked for a genotype and quantitative surface antigen level to help guide the decision, since she falls in the grey areas of the guidelines, is so young with potentially decades of treatment on antivirals, has unknown family history, and is taking meds for depression that can affect her kidneys long term. The hepatologist agreed to order the genotype - reluctantly on the basis that it was pointless. (It came back Genotype C, which I understand can be more aggressive than B, so it seems like useful information.) Here are my questions:
Given her young age, other anti-depressant meds that can affect her kidneys, variable labs, a normal liver biopsy 3 years ago and genotype C, does anyone have thoughts on starting treatment since the hepatologist left it up to her? (She has asked me for advice because of her depression.)
Does anyone have any recommendations for a hepatologist with hbv experience who could provide a second opinion? We are in the upper Midwest of the USA, but we would be happy to pay for a phone consultation anywhere.
Sorry this is so long, but the doctors we have seen over the years tend to shrug, so the collective wisdom of this group would be greatly appreciated.
Non medical opinion here but, it doesn’t sound to me like she falls in the gray area. It sounds to me like she falls within the treatment required area. Her viral load is above 2000iu and her ALT is supposed to be less than 25 (I think actually 19 for women). Her ALT is raised too so I would think she does need the treatment.
Hi @EBAB
I have seen your text and having some experience of having a sick child around understand how you feel. I am sorry for the depression your adopted daughter is going through. I hope you found out the cause because depression (hypestress) has an effect on the liver health.
Since I am not an expert on the matter in question, mine is to make you know someone is listening to you and understands your experience. They say, a problem shared is a problem half solved. Further, I definitely know our experts will be eager to weigh in.
Regards
Kinoti.
I would listen to the doctor and wait. Eat well, positive thinking, positive mood, exercise and wait. Go get an ultrasound and blood work done soon. Just because the ast/alt level is not in its best range does not mean it’s immediate treatment. If it was 2-4 times the range, I be concerned. The range could be non hepatitis related. I be more worried about going on treatment for life bc of one test.
Just my personal opinion and that’s what I would do. But I would consult with a second opinion if it’s a huge concern.
I m guessing there are few experts here that would know. I m guessing you can have a doctor anywhere just look at the test results. I believe most if not all doctors will just look at the lab result number and then go from there. It’s not like you actually would need to be there, except maybe check the liver area by hand. But I m guessing the dr could be anywhere in the US. Any university hospital network should have qualified doctors to give you a second opinion.
Thanks for sharing your story and I’m sorry that your situation is giving you such stress. I’ll try my best to give some helpful advice.
This indeed is a grey zone and there are disagreements within the field whether to treat or not in this case. The hepatologist probably left it up to her because there may be other things that could tip it one way or another (e.g. if she feels comfortable taking a pill a day, being able to pay for the meds, plans to have children or not, etc.). There are pros and cons to each med available out there:
Entecavir is contraindicated for pregnant women due to concerns about affecting the fetus, but is not associated with any kidney injury.
Tenofovir disaproxil has been associated with kidney injury and bone density loss in some instances, but can be taken with pregnancy.
Tenofovir alafenamide is not associated with kidney injury or bone loss, but is a bit more expensive.
If I was in this situation (i.e. my own personal opinion, definitely not medical advice), I would consider treatment because of the raised ALTs, unknown family history, and genotype C.
I am sad to hear of the difficulties you and your daughter faced getting answers you can trust. I live in Virginia. I just want to reassure you that if she does decide to start treatment, please don’t rule out Vemlidy, TAF, due to cost. Gilead offers coupon you can request online which covers out of pocket cost up to $5000 per year. My $85 copays is reduced to $0 with the coupon. I have to get the med mailed to me from the specialty pharmacy that my insurance plan dictates.
I am planning to start the med this coming week. I have been in the gray zone for 6 years with fluctuating dna levels and ALTs in the 30s. Normal ultrasounds, AFP, fibroscans. It took me and my doctors awhile to decide to start. I do not want to wait any longer because I want to start before I have complications. But then, I am 48.
I think the Hep B foundation has a directory of hepatologists. I have seen probably 8 different ones because we moved a lot. I can’t say there is one that I absolutely love. But I am told they all use the same guidelines. I saw Zhiping Li at Hopkins and liked his bedside manners but am not sure he is reknown for hep b. He referred me to someone who he claims is reknown at VCU. This doctor reports he doesn’t see many hep b pts here and lacks bedside manners/ listening skills. He also insisted on fibroscans. I just saw a dr at uva for 1st time. He doesn’t think fibroscans are necessary since I dont have cirrhosis. I hope someone can refer you to a great hepatologist who has much experience with hep B.
I don’t get fibroscans at UVA but I get them yearly through a clinical trial I enrolled in at the Univ of Maryland in Baltimore. When my doc first recommended I go on Vemlidy, I freaked out about the cost and instead, signed up for a clinical trial which offered me Vemlidy for 2 years if I came up every 3 months for bloodwork, and a yearly fibroscan. It is now 3 years later and although I no longer get free meds, I continue to go up to Baltimore annually for bloodwork and a fibroscan. I also finally learned about the Gilead coupon and after all was said and done, my total cost, like yours, is $0. But I’m glad I’m still on the trial! It gives me peace of mind to know there are more people following my journey and making sure I’m on the right track!
Hi EBAB, everyone has given great insight into your questions. For a specific recommendation, I would highly recommend Dr. Robert Gish who is the Medical Director of the Hepatitis B Foundation who provides telephone consults. He is very experienced in managing and treatment hep b patients, and has worked with adopted families extensively through his practice. He can be emailed at rgish@robertgish.com and of course you can check him out online as well. He was very helpful to me when I first considered starting treatment. Granted, I was already 45 year old so not a child and definitely past child-bearing. But talking to experts is helpful. Best wishes and please keep us posted. Always, Joan
Interesting. I live 30 minutes away from UMD medical center. My father was there, before he passed years ago. Good to know they had a trial on hepatitis b
Hello Thomas
I’m from Namibia and just got my hep b result in May visited the Dr every third month for test.
The tbibg is my viral load is increasing. Its now at 1460. Dr suggested tenofovir treatment. I took my first pill.
Is it too early to be on treatment?
Can you explain the viral load issues?
Please help me understand if treatment this early is needed as the first Dr. Who diagnosed said there’s still not need for treatment.
Will be waiting for clarity.
Feel most welcome in hep b community where we partner in sharing what we have and giving each other company to courageously face life despite hep b.
Further, to get good advice on whether you should or shouldn’t be on TDF, you need to submit a comprehensive medical report which includes:LFT, ultrasound, fibroscan results and probably qaHBsAg etc. This is so because decisions on whether to treat or not cannot be based on the level of DNA alone.
Hope i have not discouraged you.
Regards
Kinoti
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.
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.
