Possible side-effects from antiviral therapy

Dear Grithcel13 and jeandoe - it is wonderful that you have found each other and are both from the Philipines (or maybe I misunderstood?). Anyhow, it’s great that you’re both seeing liver specialists who are being proactive in managing your hep b. Many of us on this hepbcommunity.org forum are on treatment, so collectively we have a lot of lived experience and advice to share with each other. Of course feel free to email each other privately. But please also continue to post on this forum because your questions, thoughts, insights really can help all of us!!! Thanks again for sharing your stories and look forward to hearing more from both of you. Always, Joan

Surely Joan, I will continue to give support and ask questions on this lovely community we have. I think this is the best support every Hep B patients can have and I am thankful to find this group. :blush:

Hi Grithcel13,

Thanks for replying!!! I will definitely message you at your yahoo address.

Thanks.

Hi Miss Joan,

Wow we have the same name :slight_smile: Yes, Grithcel13 and I are form the Philippines. I am currently living here in the Philippines. Surely I will definitely be active in this forum. I am very grateful because I found this forum. It’s a relief for me. Now my fears are slowing fading away!! I am gaining strength now. God Bless to all the people here and let’s be positive cure is coming.

Regards,
Joan

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Thank you John! I am really grateful I found this forum!

Hello all,
To those of you who are currently taking Vemlidy or any antiviral drugs for HepB, do any of you ever feel confused or depressed? It seems like since I started taking antiviral, I am feeling confused especially when it comes to making decisions. For example, I might want to do something in particular, make plans but then I changed my mind or there might be so many things I want to do but I can’t make decision which one to choose first? I’ve never felt like this before taking this medicine and I’m not sure if it’s normal or not. A lot of times I start reading something but I start something else before I finished the first one I started, or start a project but I get distracted pretty easily and it’s very frustrating. If any of you experienced this same thing I’ve experiencing right now, what do you do to help yourself?
Another question is, do any of you follow certain diet? I used to do paleo diet for a couple of years but then I got tired of it though it did helped my lab work to be better.

GOOD NEWS: I started my antiviral med for almost exactly a year now and back then my vital load was at 98 million with AST and ALT being elevated. Few days ago, I received a call from my doctor’s office to tell me that my vital load is now undetectable with AST and ALT at normal levels and I am thankful for that. I just wish I could stop taking this med because I felt like it’s messing me up. Hope to hear something from some of you for inputs and advice. Have a great day

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Hi Gretchen,

I have posted a couple of times about this particular side-effect on both hepblist and hepbcommunity. This is from reading on these forums and from responses from specialists, but most people have little to no side-effects from antivirals. When it comes to the brain fog, most people don’t have issues, although I have seen some people post that they do to some degree. Specialists have told me that they don’t encounter patients with it very often. However, in my case, I ended up with brain damage and memory loss. The worst was the first 3 months after starting my first antiviral which was Vemlidy. It took another 6 months to get my vocabulary and memory function back. To this day, I still have some lost long-term memory and deal with short-term memory issues that I did not have prior to starting treatment.

Each time I am put on a different antiviral to try to alleviate the many issues that started after treatment (that I never had before in my life, like major G.I. issues, chronic pain, etc.), I end up with worsened brain fog. It usually goes away after a couple of months but has never gone back to how things were before I started any treatment.

Keep in mind that my situation is very rare. I have cirrhosis and didn’t even start treatment till after I was diagnosed with cirrhosis. My current hepatologist thinks that my body is having a particular reaction to the antivirals and she hasn’t dealt with this type of reaction before, so it is very rare for this to happen to such an extreme. She works out of a medical university in the liver transplant department, so she sees many viral hepatitis patients.

I was most recently seen by another hepatologist on staff that tried to explain to me that “correlation is not causation”, but the timing and issues I ended up with, that I never had before in my life before starting treatment is just too coincidental for me to believe that it is not associated. Most doctors have told me that they are probably related but that they don’t know how and why. No doctor has been able to tell me that the antivirals didn’t cause all the issues I have had; just that it’s uncommon and they don’t usually see anything as extreme as my case.

So in no way am I knocking the necessity for treatment. I just wish I had started treatment back in the early stages of fibrosis. I am also trying to explain that treatment side-effects (or in my case ‘reaction’) can vary from nothing all the way up to what I have gone through. Only you know your body well enough to know how different things are now compared to prior.

I used to be a network engineer and worked in IT most of my life. I would multi-task and have to remember what I was doing on 10 different servers, be on the phone doing tech support, writing emails etc., all at one time. Now, it takes me an hour to write these essays that I do on here and don’t know if I am saying things correctly. I read so much information on this forum about results and hbe, a, g, anti this and positive, negative this and that and alt, ast, afp, and have such a hard time keeping it all straight. I don’t think I would even pass a test on it.

What was my point? Sorry Gretchen, you know your body and mind best, advocate for yourself. I know many times that my hepatologists have blown off my concerns until I ask them questions that I have read on this forum, and then they will decide to run this test or that test or seem more concerned about issues only after I advocate for myself.

Ha… that reminds me… I would always read on the forums about people getting fibroscans and their scores. I always wondered why I never had one done. I thought maybe it’s only in countries outside the U.S. Then I was reading people in the U.S. posting their scores. So I finally asked my hepatologist why they don’t do fibroscans on me. I was told that fibroscans test the amount of inflammation of fibrosis and because I have cirrhosis, there is no need for a fibroscan. So that’s why they do ultrasounds, CT scans and MRI’s on me and no fibroscans. I felt really stupid asking questions at times, but this forum helps me to be more knowledgeable and confident about asking questions and advocating for myself.

I hope this overly long response helps you and maybe anyone else too. All I can say is START treatment when advised. Don’t let anything stop you, like family, stigma, fear, or in my case, my career at the time.

-Paul

Dear @ Grithcel13 and Paul, not sure if Grithcel13 is actually “Gretchen” or not? Anyhow, I read both of your messages with a lot of interest. Brain fog is something that I’ve heard a lot about from hundreds of patients over the past 30 years that I’ve been working with the Hepatitis B Foundation. It’s real! As is right-sided abdominal pain. Both are symptoms that most doctors, including hepatologists, tend to dismiss as not real or unknowable. With that said, I personally haven’t had either either before or after starting medications almost 20 years ago. But I have heard from so many people living with hep b about these symptoms that I truly believe it exists.

Maybe Thomas or some of the other scientists on this forum have a possible explanation about why starting an antiviral medication could cause brain fog? Hopefully as Paul wrote about, it’s a temporary side effect? My only brain fog is a result of being 62 years and being post-menopausal. “Normal” memory loss like names and where my car keys are to mild confusion like walking purposefully somewhere in the house and then not remembering why I needed to go into that room. This is such a common experience with my other older female friends who do not have hep b, so I don’t attribute it to my condition.

Anyhow, it would be interesting to hear from other folks on the forum about their experiences with brain fog or not? And how they cope. Thanks “Gretchen” and Paul for raising a very interesting issue! Always, Joan

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Dear @Grithcel13 and @PuallyHBV,

Thanks for raising some of these issues. The short answer is, we don’t know where these symptoms are coming from or if they are due to the medications or not. I am not aware of any research into this.

@Joan_Block, do you see any patterns regarding all the people that have reported this brain fog at Hep B Foundation? Does it run in families? Similar jobs or countries?

Thomas

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Thank you @Joan_Block, @PuallyHBV , and @ThomasTu for your input!
@PuallyHBV , your story is very interesting and thank you for sharing it. I am trying to figure out if maybe my foggy mind is caused by some of the foods I eat or from the medicine. It’s hard to tell but I’m going to try changing diet a little bit and see what happens.
@Joan_Block , thank you for pointing out my two different names. It was a mistake that was done in my country. My actual name is Grithcel but most people calls me Gretchen (original name given by my parents but misspelled it to Grithcel at the registrars office) because they can’t either remember how to pronounce or spell it properly.

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Hi Thomas, you ask an interesting question about brain fog. Many of the people who have talked about it are “older,” generally meaning over 40-50 years. And since most people didn’t talk about their family members or their jobs, I can’t say whether it ran in families or was related to their jobs. And come to think of it, I don’t recall hearing folks from Asia talking about brain fog - generally folks from the U.S. and Europe. But it could be an “Asian stoicism” to not talk about symptoms? So certainly, it would be worthwhile if someone studied this phenomenon to try to determine patterns and/or causation! Thanks, Joan

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Thanks Grithcel for clarifying your name. I agree, it’s not a common name here in the U.S. so I can see why people find it “easier” to say/write Gretchen. With that said, however, I will try to remember that your actual name is Grithcel! Always, Joan

Hi Joan,

That’s interesting and made me think about a comment my clinician mentor mentioned about interferon and how Asians seemed to respond better to it (with fewer side-effects). He suggested that this might be due to family support structures at home, but also may be that stoicism you talk about.

Thomas

Hi Thomas, I remember in nursing school reading about studies done on patient responses to pain based on a person’s ethnicity. Being Asian, of course I remember quite clearly learning about the “stoicism” of Asians in a hospital setting. But since then I know there have been studies about how Asian patients tend to report less fatigue, pain, etc. with chronic hep b compared to other ethnicities. The key word is “report” since stoicism (and privacy) is a culturally learned norm among many, if not most, Asians. Interesting how culture impacts one’s response to a medical diagnosis. Always, Joan

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Hi i am a 36 year old woman and i was diagnosed 5 years ago during prenatal screening. I believe i may have contracted it as a child. I was e-antigen negative and had very high viral load in billions. I was put on antiviral therapy in third trimester of pregnancy , stopped antiviral after child birth for nursing and started again after i stopped nursing. I do notice following changes since i started antiviral therapy.

  1. Changes in mentstrual cycle.
  2. Weight loss. I seem to be losing weight without much effort/exercise. Lost atleast 10 pounds after antiviral therapy over 6 months - 9months with no lifestyle changes.
  3. Sleep disturbances and depression.
  4. Gas and bloating.

I am interested in learning if anyone else experienced this? Especially concerned about weight loss

Hi Prana,
Thank you for sharing your story and concerns and I would like to share my experience with antiviral medicine as well hoping it’ll help you.
I am taking Vemlidy since last July of last year but I was diagnosed in 2008 when I was pregnant. My vital load was at 98 million prior to taking Vemlidy and my virus is now undetectable since early this month. When I started taking the medicine, I had few side effects including night sweats at night, bone aches, migraine, tiredness, depression, confusion and a huge change in my cycle. It is getting lighter from 5 days cycle to 3 days and it’s very light. With that in combination with my night sweats, I sought to get help from a naturopath. We did hormone test and it showed some abnormalities with my estrogen and progesterone levels but not as bad though they did say that the medicine I’m on is probably causing some kind of hormonal issue. I do notice though that every time I eat healthy greens and avoids carbs, sugar and process foods, I feel a lot better and my pms is somewhat lighter.
Lately, I’ve been making a lot of fruits and vegetables smoothies and I can see a huge difference with my depression, irritability and night sweats. I do get bloated and gassy sometimes if I choose to eat oily foods, rice, gluten and dairy otherwise I feel good with eating just smoothies, salads and meats ( mostly paleo).
Hope this helps.
Hope this helps.

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I have been on entecavir for 17 days, I have constipation and dark stools. It’s normal?
What can i do ?
Thank You

Dear @Medinacity,

Thanks for your question. I think such a change is not commonly reported due to entecavir. If it was me, I would be consulting with a health professional to talk about what could be causing it.

Hope this helps,
Thomas

Before I started antiviral for my hep b. I never had any problems with constipation. But now I have it once very day or two.

my kidney was very impacted after a few years of TDF… protein results were always above range…

so i switched to TAF now for a year or so without any big improvement but stable…

so if u can, change to TAF ASAP because damage is irreversible.

since beginning treatment, I’ve always had headaches and dry sinus…