Sensitivities to Entecavir and Tenofir

Living With Hep B
1

Hello All,

My latest bloodwork in November shows viral load has gone up a lot and the liver enzymes are higher.

In the past 3 years I have tried Entecavir for a month and i got non-stop headaches and my hands turned yellow. I stopped taking this after one month.

I tried Tenofir for a month and I got suicidal thoughts and stopped.

The doctor said to me if my liver gets worse, there is no medicine for me because I am allergic to them.

Are there no options for me ?

Thanks.

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I took me around 3 months of taking tenofovir for my liver enzymes to stabilize and HBV DNA to go to undetectable. I had unexplained skin rashes for a few more months.

After that, no more issues.

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@littleli128, sorry to hear about your struggles.

You may talk to your doctor about trying variations in treatment - you could alter when you take the medication (e.g., different times of day, with/without food, etc.), how much you take (e.g., 1 every 2 days), or formulations (e.g., different companies might have different bulking compounds they use in the pills).

Hope this helps,

Thomas

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Hi Thomas,

I am currently seeing a Gastro doctor for past 10 years and he had me do bloodwork and ultrasound twice a year and he may not have the deep knowledge how to treat me with the less common side effects that I am experiencing.

I was referred to one Hep doctor a year ago at the hospital but I got a really weird vibe about this doctor. His assistant seemed very nervous/unhappy when he was around. And I felt like a number - seeing rows of patients in the waiting room.

How do i know I have found a good Hep doctor ? I am based in Toronto, Ontario.

Thanks!

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Hi mantana,

I am very happy to know you did not experience the side effects like me and that you took it for 3 months.

For some reason, my Gastro doctor told me I had to take to Hep B medication for life ?

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Hi @littleli128 ! I am from Toronto and I personally had a great experience at the Francis Family liver clinic in Toronto General. They are by far the best in terms of deep clinical expertise. I’m sorry to hear that you’ve been having trouble with medication side effects. Which version of tenofovir were you taking? There are 2 different formulations approved for treating hepatitis B: tenofovir disoproxil (Viread) and tenofovir alafenamide (Vemlidy). Some people who have side effects from one will do fine on the other, so it may be worth trying that if you haven’t already tried both.

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Hi @et5656,

Do you mind if I may ask who is your liver doctor there? I was referred to Toronto General last year. I was not sure about the doctor i got referred to.

I tried tenofovir disoproxil - think it might have been a generic brand?

Thanks!

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I don’t go there anymore, as I moved to the United States in 2018. While I was there, my main doctor was Harry Janssen, though he moved back to the Netherlands and is no longer there. I didn’t always see him, because he sometimes had his residents/fellows see patients instead. Which doctor were you seeing?

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Hello @littleli128

We do take the medication for life.

I’m sorry about the side effects you have experienced. I’ve not heard of those before.

Try the way @ThomasTu has suggested.

It’s really important that you stop the virus damaging your liver.

Blessings

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10

Hi @littleli128,

We do have a few Canadians on the forum, including hepatologist @cscoffin. A lot of them may be able to provide a bit more local knowledge compared to someone currently in opposite hemisphere.

Cheers,

Thomas

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Hello unclear what is the question?

The Francis Family Liver Clinic in Toronto has excellent specialists in Hepatitis B

Entecavir or Tenofovir (TDF or TAF) are available and covered by public drug plans in Canada (some have co-pay and varies by region). Its important you take medication daily. Most people have little or minimal side effects

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Hi @cscoffin,

I took TDF before for one month and got suicidal thoughts.

Have you encountered any patients with this side effect before ?

Thanks

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I haven’t personally heard of that as a side effect with TDF, though I think I would recommend switching to TAF (Vemlidy) before you give up on treatment. It may be more expensive because it’s not available as a generic, but if you have private health insurance (e.g. through your employer, or your spouse’s employer), most of them will cover it.

I’ve never been on Vemlidy, but I was on Viread in Canada before it was available as a generic. The insurance I had covered 80% of the cost, and Gilead (drug manufacturer) had a patient assistance program that covered nearly all of the rest, so I paid next to nothing for the drugs.

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Hi @littleli128,
Sorry to hear that you had suicidal thoughts after taking TDF. Unfortunately, suicidal thoughts have not been seen, and actually the first time I am hearing this. Medications that tend to increase suicidal thoughts are antidepressants. However, I will suggest that all the medications you are taking be reviewed with your hepatologist, as TDF may not be the culprit. Some medications can interact with others, leading to unpleasant side effects. I also agree about switching to another antiviral. Best, and let us know how things go. Bansah1.

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@mantana ,

Ok thanks for the input.

I noticed my anxiety gets high in winter months and also coincides with one of my biannual liver checkups.

I think being a chronic carrier for 40+ years, and these tests results go up and down up and down and keep hearing tests are not good, numbers too high, it is incurable, etc has conditioned me to overthink and that I have no options and feel hopeless and scared. This could lead me into negative thinking and thus my brian is overwhelmed and goes into a deep vicious cycle. Also, i had a tough childhood and I was born with a weak immune system. I almost died when I was one year old from a cold and was in the hospital for a month in China.

My Hep B was somehow misdiagnosed with HiV in the 1990’s in Canada. Back in my teenage years, one old family doctor told me i had HIV and I only had 3 years to live. This gave me depression and i was too scared to tell anyone. I had no idea how I got HIV since I was not sexually active nor doing any drugs. Years later I am still living and wonder what happened to the HIV and I asked the new family doctor to do a test and found I had Hep B and not HIV.

I do recall when I started Tenofovir D, my mouth was dry and tasted bitter, just like how I feel when taking antibiotics. And it made me feel tired.

I will talk to my gastro and discuss the next step to refer me to a liver specialist.

Thank you to everyone who responded and Happy New Year !

Hope i have something positive to share.

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Thanks @cscoffin! This is great info.

@littleli128, I’m so sorry to hear about your experiences and this sounds really tough. Just know that there’s a non-judgemental community here who understands what it’s like to have hep B. Please keep us updated with how you go!

TT

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