I was diagnosed with chronic Hep B in 2013 whilst in a relationship with someone who knowingly and willingly exposed me through sex for over a year straight. When confronted she lied but I found her Tenofovir D script one day and not long after that I came up positive for Hep B. Since she lied for so long and likely infected me early in the relationship by the time my PCP caught the infection I already had fibrosis/cirrhosis on imaging and a viral load north of 180 million if memory serves,
I was told I was in serious danger and convinced by a Gastroenterologist at Tufts Medical Boston to enter a drug study funded by Gilead Sciences. The drug study was not good and the care received while in it was awful. I’ve never been the same since.
After firing my Gastroenterologist and leaving Tufts Boston I’m grateful to have found a liver specialist who seems to actually care about me more than gathering data for a drug study.
Currently, im on Vemlidy. My viral load is low: 2-300. My LFTs are safe and low but I have struggled greatly with Vemlidys neurological side effects for years now.
All of this has changed my body so much from Osteoporosis to muscle wasting and more. I think my current wife is tired of me being so tired and affected by the hep b and treatment side effects that she’s asked for a divorce. My social life has been non existent as friends fade away. My dream job of being a self employed artist installing murals and fine wall and ceiling finishes is impossible for this painridden body to keep up.
Sorry if this sounds like a lot of complaining it’s just this disease and its treatment have seemed to and continues to affect my life on every level. I’m doing my best to not give up. I’m hoping that this community can validate my journey and give me a sense of community. This disease is so lonely and isolating
Thank you for listening,
I hope everyone is fighting their own good fight and winning.
I am so sorry you are going through this crisis. From my own experience with HBV, there are several things you can do to improve. First, eat healthy and don’t stress out too much! Stress has a lot to do with your current symptoms. Second, you should try to exercise. I know this won’t be easy, but it will definitely improve your mood and energy. Also, let’s hope a more effective treatment for HBV is approved soon!
Thank you so much Ace for your kind words and support! I agree stress affects us all so much with this disease and in the past I searched “gentle Hatha yoga” and found some great workouts that were manageable and very helpful. I need to get back to that self care and self love routine for sure!
Cheers to hoping for a cure and in the meantime fighting the good fight!
I’m sorry all this has happened to you. There should be a crime if you infect someone. Moral code has flown out of this world.
You said V is giving you side effects. There are other anti-virials on the market. You would need to see your specialist. I’m glad you have one available. I only have a GP. Thankfully my numbers don’t fluctuate.
Others have mentioned diet and exercise. They are correct. Very important. The right food is good for our mental health too.
I don’t isolate but then I haven’t told anyone, outside of my family. I’ve had HepB since early twenties. I’m now sixty-six!
Three adult children and three grandchildren. I don’t talk about the disease to anyone. It’s too complicated. They’ll ask me questions I can’t answer.
That’s why I love this forum. Anytime I’m feeling low or worried about something I can come on here. So, no need to apologize.
. I had tried Entecavir and Baraclude in between the back n forth from Viread to Vemlidy. Neither Entecavir nor Baraclude had the viral resistance I needed so they weren’t effective but still gave me significant side effects. So we’ve narrowed down to Viread and Vemlidy are most effective for me. Both have stronger viral suppression for me. I just have to learn how to live with the side effects. I’ve been told that the drug study I did years ago may have made me more sensitive to treatment side effects for this class of antivirals.wother that or my liver specialist says I’m likely in a smaller category of patients who just happen to experience more of the nasty side effects from these drugs while not everyone necessarily does.
I agree diet, stress management and physical exercise (if able) can and do go a long way towards mental health while juggling this Hep B disease. I gotta get back on that horse.
@rpfbanner17 You’re no longer in danger, your situation is getting better, it was a tough experience that your body greatly managed to pass through.
Just look at how amazingly you lowered the levels Now level up your morals, you’re not alone, we’re a community of +250 millions carrying HBV around the world, not to mention double this number carrying it without notice.
And luckily, it’s 2026, news coming from earth corners that HBV will be a history.
Hi @rpfbanner17,
I am sorry to hear about your situation. I hope things do improve for you soon. Yes, we are all fighting, but the battles vary. Some patients have it worse than others, but we are all battling something.
Your doctor could be right about your system becoming too sensitive to the current antiviral medications. The mutation profiles of current drugs are better than those of past antivirals. Entecavir (Baraclude), for instance, has a low risk for mutation.
I empathize with you, and I acknowledge that hepatitis B leads to loneliness and can make life extra challenging. I have dealt with chronic fatigue for over 10 years now with no relief in sight. Nothing seems to help, and I have not found any solutions. This, as you can imagine, has made life difficult. I have been unable to work, and had to move in with a friend, where I still live, because I lost my apartment. I agree that many challenges are associated with this disease. While horrific, we can’t give up. We have to find ways to manage and move forward. We must remember to live. Take it an hour or a day at a time.
I hope you find something that works and helps improve your situation. I bet you never imagined your life would be like this. Together, we shall overcome all this. Remain hopeful and strong. Best, Bansah1
I’m so sorry you have been through so much but I am thankful you found better care and a community to help support and help you. I’m also located in the US and I found out I had HBV back in 1989, when I was only 16 years old. I was born very premature, and my mom seems to remember a transfusion, so more than likely that is how I contracted it. Back in the day, there was very limited information and really not any of the available treatment we have today.
I’ve been on Vemlidy/Viread for 10 years, thankfully without any issues. I did do a trial a couple years ago which involved Interferon, which did give me some major side effects for quite some time. I’ve just made sure to consistently do what I can to stay healthy and keep moving. I eat well, walk daily, and also practice power yoga/pilates with weights daily because now being in my 50’s, a thin post-menopausal woman, on Vemlidy I do have risk factors for osteoporosis. I had a DEXA scan a couple years ago and was good. For you, there are medications, if needed, for osteoporosis. I feel for me, it’s the weight bearing exercises that have keep my bones in good shape, because I do have a family history also of past grandmothers that had osteoporosis. Also, Yoga and Pilates with weights have done amazing things for my joints, posture, stiffness, and overall how I feel and look. I’ve met many where I practice that have some crazy amazing stories of strength and pain relief from the practice (from back surgeries and not being able to walk, getting off all pain meds, fibromyalgia, avoiding surgeries, etc). Men do it as well also, so you may explore this as a treatment for your side effects, mental health, and just overall alignment with your body.
I know being in the US and having HBV can feel isolating (I’ve never physically met someone else in person) but now that I’m a little older and can look back at my younger decades, I am in some ways thankful for HBV. This sounds odd, I know, but I chose to be healthier and way more mindful of what I do and what I allow into my body because of the HBV. While I do stay mindful of my HBV and keep up on regular monitoring, I do not let it control me either. Best wishes and you have us here to help and support you also!
Now level up your morals, you’re not alone, we’re a community of +250 millions carrying HBV around the world, not to mention double this number carrying it without notice.