Should an acute Hepatitis B patient start on entecavir- personal experience

In this article, I wanted to share on my personal experience in starting my mom on entecavir medicine for my mom’s acute hepatitis B, and whether if starting my mom on this medicine was wise or not. I am able to speak only from my experience and it is important to note that it may differ from one person to another.

In February 2017, my mom was hospitalized due to acute hepatitis B where she developed jaundice and her whole body swelled. She had lost appetite and wanted nothing but to sleep all the time. Actually she has been having chronic hepatitis B for years which was under control but turned acute by the end of 2016.

The specialist gastrologist who treated her prescribed Entecavir 0.5mg, one tablet to be taken daily either 30 minutes before meal or 2 hours after meal. I knew her liver was not well and through some of the advice of my mom’s friends (who were like my mom retired nurses), I did not start my mom on the medicine immediately.

By the end of April 2017 during a follow-up checkup, the specialist asked if I have started my mom on the medication. Her condition has improved (I will explain below what I did that brought about that improvement) but her body still shows some sign sign of bloating (ascites) and jaundice (she was still yellow and her urine was tea coloured). The specialist was getting a little angry with me and make it in no uncertain terms that if I do not start my mom on the medication, it is akin to letting my mom’s condition deteriorate.

I did not have anyone that I could really refer to then so I finally started my mom on the treatment. Entecavir is the prescribed treatment for acute hepatitis B.

What you need to understand before deciding to start the patient on Entercavir is that:

1. Cost- can you afford it?
The medicine is costly- you need to decide if you can afford the cost of this medicine

2. To be taken for life- rarely you can stop
Once you start the patient on the medication, it is for life (rarely the patient can stop the medication)

3. The generic versions generally may not work.
The Baraclude by Bristol Mayers Squibb brand is effective. Halfway through the treatment, the hospital converted their medication from Baraclude to a locally made generic version. She started showing signs of deterioration. I stopped the generic version immediately and returned them to the hospital’s pharmacy. Now, I buy her medication from pharmacy (paying a premium price)

4. Commitment to give at same time daily
This is especially so if the patient has The HBeAg-negative virus readings. This was told to me by a specialist gastrologist in Thailand where he said it is important to give my mom the medication the same time each day. According to him, by giving the same time each day, it would reduce the chances of the virus mutating as he said my mom’s virus is the type that can potentially mutate. Once it mutates, even with the medication it would no longer be effective.

True enough, once I started giving my mom her Entecavir medication the same time each day (7am on empty stomach and 30 minutes later I would make her an Ensure drink), her Hepatitis B virus readings levels had gone to negligible levels. But the specialist told me that she still cannot stop her medication for once she starts to take it, it must be taken for life.

What happens after my mom started on Entecavir 0.5mg daily:

True enough, my mom’s condition gradually improved after a few weeks. Gradually the swelling disappeared, the jaundice slowly was fading off and her urine gradually returned to normal colour.

It looked as though that the medicine was effective in the treatment. After the follow-up with the specialist, he was pleased to see my mom’s condition improved.

However looking back, there could be other factors that helped to improve my mom’s condition before I started my mom on the medication:

1. Nutrition and diet
During my mom’s hospitalization, I realized that her condition could have deteriorated cause of lack of nutrition. We lived like the normal city lifestyle where I go to work early in the morning and due to the demands of my work responsibilities, I come back late each night. Most of the time I was mentally too exhausted to check or ask if she is eating alright. Initially I thought as a former nurse, she would have known better than me on food and nutrition.

Reflecting back now, I believe she was already on early stage of Alzheimer’s where she could no longer recall how to cook complicated dishes and was cooking almost the same dishes daily. On weekends I observed that all she was eating was biscuits and Ensure drink. She did not feel like eating anything else and I was too stressed from work to push her. And my mom is a stubborn person so generally we cannot force her to do what she does not want. I had thought that as former nurse she would have knew better.

When she was hospitalized from the acute hepatitis B, all the hospital did was to give her intravenous drips and to give her laxatives to pass out the toxins from her body.  At the same time, they also gave her soft food. That time she had not started on the medication but she had shown signs of improvement, getting stronger.

That made me realized that nutrition plays a role. After she was discharged from hospital, no matter how busy or tired I was, I saw to it that each day she has a proper breakfast. I also took extra time time off and drive back during lunch and packed some food and ate with her. By dinner, my brother was back and could keep her company.

After two weeks, a friend of mine came to care for her. She cooked for her and kept her company.

2. Emotional well-being and companionship
When we heal the body, we need to look into the emotions as well. My mom’s condition took years to turn from chronic to acute. When she was okay and was able to care for herself, I often worked late. She spent most of the time alone by herself at home with our pet dogs to keep her company.

After I got my friend to stay with us and kept her company, she was no longer lonely. She had someone (aside from our pet dogs) that she could talk to. By then her signs of Alzheimer’s was getting obvious- where she kept repeating and repeating her life as a young girl and her gratitude towards her adopted mother who despite being a servant gave her an English education. Her adopted mother had passed away more than 30 years yet my mom misses her dearly.

I knew my friend could not help for long term so eventually I made the decision to resign from my job to care for her. Having companionship makes a lot of difference- it gave her heart strength and happiness.

3. Alternative treatment
In between, my mom also suffered about two falls. The fall made her immobile and in pain. She could not get down from the bed to use the commode.

I took her to acupuncture treatments where it was able to improve her condition slowly. Immobility would make her condition worse as lack of circulation would made her condition deteriorate.

Learnings of more than two years after having my mom on Entecavir medication

Entecavir is effective in bring the acute hepatitis B under control provided the liver cirrhosis is not too advanced. However, once you start the medication, it has to be for life. If you stop the medication, you risk having the patient’s condition to deteriorate.

When I first started my mom on the medication, she has government subsidy and I was able to buy the medication on a subsided pricing. In Malaysia, a box of Baraclude Entecavir 0.5mg consisting of 30 tablets cost RM530 from a local pharmacy and RM375 on subsided pricing if purchased from the government hospital. However after about few months of starting my mom on the medication, they switched to the locally made generic version. After 2 weeks I noticed my mom’s condition seemed to return- she was more tired and sluggish and refused to get up. I stopped the generic medication and went straight out to the pharmacy to buy the original version for her. After a few days of taking the original version, her condition seemed to improve.

As the result of my mom’s condition- I resigned from my job to care for her full time. The cost of the medicine is honestly eating a lot into my budget. But it is something I have to give her priority because once I started, I know I cannot stop her medication.

Now both my mom and I spend most of our time in Thailand. My mom’s treatment has also change to the private hospital in Thailand. Baraclude is even more expensive in Thailand than in Malaysia- in Thailand, the same box cost about 7500 baht which is nearly double the price of what it cost in Malaysia. I have to forward my mom’s prescription to my friends and have them buy the medication from pharmacies in Malaysia and bring it over when they come to visit me.

Conclusion from my experience

Baraclude is an effective medicine- that is why it is expensive. It is not the type of medication which you can take for a month or a year and then stop. Once you start, you may consider that this medication is to be taken for life.

Now while seeing an excellent specialist in Thailand, even he told me my mom cannot stop her medication because her Hepatitis B belonged to the mutating type.

Many people would not be able to afford this medication long term. If that is the case, then one need to consistently care for diet and emotional well being of the patient. Eating of proper food at proper times. Getting sufficient rest. Total abstinence from diets that are damaging to the liver such as alcohol, processed food, cold food and sea food. Being happy, let go and do not stressed up or get angry. Emotions, especially anger damages the liver (from the traditional Chinese medicine perspective).

The person also need to feel loved and have something to look forward or to live for.

Going the alternative route requires a lot of consistency for the illness could return with a more serious condition if it is being neglected and allowed to deteriorate.

In our busy lives, everyone need to work hard for a living to pay the bills and not everyone is able to just resign and care for an aged parent.

Just like a person with high blood pressure or diabetes, how many are able to go through a total overhaul of both lifestyle and emotional change and commit to making the body healthy so that one can be healed from the condition and can stop the medication? Still, Entecavir is not like high blood pressure or cholesterol meds where one can stop it if the body no longer display symptoms of the condition.

I noticed it is much harder generally for people to commit to a total change than to pop in a pill daily. In the end, it is a very individual decision to decide on because either way, there is a price to pay (to take medication, it will be long term cost, and to revert to lifestyle it would be a total commitment to overhaul one’s life both inner and physical).