Deciding when to start treatment

So I see two paths ? If they see viral load high they start medical treatment with antiviral tablets regardless of alt, ast levels and chirosos. Other path is they start treatment only when chirosos, so which on is better ? The second one you let immune system more chance to fight the virus itself.

So I see two paths ? If they see viral load high they start medical treatment with antiviral tablets regardless of alt, ast levels and chirosos. Other path is they start treatment only when chirosos, so which on is better ? The second one you let immune system more chance to fight the virus itself

Hi @hepb1,
I pray that you will not be tempted to wait for cirrhosis to start treatment. :pleading_face:Infact, one of the goals for treatment is to slow/ revert progression to cirrhosis.Remember once the liver is cirrhotic, it’s difficult to reverse the damage.
Regards
Kinoti

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Hi @hepb1, I agree with Kinoti that you no one should wait until they have cirrhosis to start an antiviral treatment. For those of us living with chronic hep b, we could develop liver cancer without even developing cirrhosis! So, you and your health care provider have to decide when is the right time to start treatment. A high viral load (generally >1,000 IU/mL) and elevated ALTs are a signal that it might be time to start medication. Another key factor is one’s family history. If there are family members who have had liver cancer and/or other serious liver diseases like cirrhosis, then a doctor may want to start you on antiviral treatment sooner than later. So many factors to consider!! Always, Joan

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As both Kinoti and Joan mentioned, you definitely don’t want to wait until there is cirrhosis. Many of the current guidelines suggest that to only start treatment when ALTs are elevated. This simply means inflammation, not cirrhosis.

If you are found to have cirrhosis, you definitely should be on treatment, but doctors will hope to treat you before that so your liver health is preserved.

Thomas

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I’ll chime in here also since I am someone who waited to start treatment after they were diagnosed with cirrhosis. Please, please, please start treatment as soon as it is recommended by your doctor.

I am a major proponent of people with CHB starting treatment as early as they are allowed. If you do so, you can prevent further damage to your liver and possibly have a better chance of your liver healing. If you wait till after cirrhosis, your chances are a lot slimmer and you can get to the point like me, where your liver is too damaged and all you can do is try to keep whatever is left working, working.

It makes me wonder how much better my quality of life might be had I started treatment prior to cirrhosis and how many other medical conditions I now have, might have been averted.

Everyone, please start treatment as soon as you are allowed and give your liver the best chance possible to survive until there is a cure.

-Paul

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My dear Colleagues!.
My Viral Load always decreases and I am NOT on treatment.
First test 53 IU/ML, Second test 40 IU/ML Third Test 20 IU/ML Fourth Test is HBV DNA undetectable.-
Hbsag more than 1000
Hbeag Negative
AFP test 15 first, then 12 and now 9.(High??).
MRE- Mild Liver Fibrosis.
ALT and AST normal.
Direct billirubin 5
Itchy skin
Fatigue.
Pain and tilting under the right rib cage
Sharp pain on the chest
Lack of concentration etc.

Doctor would not let me start treatment.
From your experience
1-would starting treatment have future implications like resistance etc.
2- would starting treatment remove or reduce Itchy skin
Fatigue.
Pain and tilting under the right rib cage
Sharp pain on the chest
Lack of concentration etc.

Dear @Wadani1,

This seems like your immune system is reacting against the virus infection. I would expect that once you reach a point where there’s very little virus left (which you are very close to) any symptoms directly to do with the virus would be reduced.

In these cases, treatment is not indicated because the drugs suppress the virus; if there’s only very little virus left, there’s very little to suppress.

I am not sure about what is causing the itchy skin, fatigue, pain, etc., so it’s hard to tell how to treat them or to know if they are related to the hep B at all.

I hope this helps,
Thomas

Hi madam 1
I think @Thomas has told you all you need to know in a cleverly way. Your future is bright :grinning_face_with_smiling_eyes:and I think you need to be monitored more than treated. You know the guidelines for initiating treatment according to AASLD is viral DNA 2000iu/ml and ALT of >50 ul(some) ALT>70( for men) for those who are HBeag -ve orViral DNA 20000 iu/ml and ALT >50(women)>70(men)for those with HBeag+be.

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:

  1. 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.)
  2. 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.

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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.

Dear @EBAB,

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.

  1. 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.

  1. The hepatitis B foundation has a search engine for physicians in the US with Hep B experience - https://www.hepb.org/treatment-and-management/physician-directory/

Hope this helps,
Thomas

@EBAB Dear Elizabeth,

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.

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I go to a hepatologist at UVA too! Small world!

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!

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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

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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

It says it’s still recruiting but the site may not be updated, estimated completion date is 2025. It’s called the HOPE study.

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.

Hi marlos1993

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