Hi - this is my first new topic I’ve made here and I just joined the community yesterday.
For context, I’m 29 and was born with HBV from birth. I don’t know my birth mother, I’m adopted. I have had a hepatologist monitoring my liver functions through biopsy, blood tests, and MRI/ultrasounds/fibroscans my entire life.
Until recently I was an “inactive” carrier or something like that, where my viral load was relatively low, the highest it went once was 9000iu/mL for like 2 weeks and then went back down to the usual 300-500iu/ML range.
This month my bloodwork showed it spiked to 29,500iu/mL and now my doctor is recommending treatment. My ALT and AST are also elevated - so I’m getting really worried that my liver is already damaged and now the rest of my life will be downhill.
I don’t have much of a support group for this because no one in my family has it and my friends don’t know.
1 - If anyone has started medication treatment and had a positive experience can you please share? Treatment is really scary for me because it’s for the rest of your life. And scared of side effects
2 - is 29,500iu/mL really that alarming? What if it is just a fluctuation??
3 - If my liver enzymes continue to be elevated does that mean my liver is already damaged and is continuing to be damaged at this moment?? Every second of the day I am crippled w anxiety that my liver is further deteriorating and I’ll be dead soon. I understand this isn’t totally rational and it’s a slow progressing disease but I have anxiety disorder (I am going to talk to my doctor about increasing my anxiety med dose slightly).
4 - if my liver has already begun fibrosis can it be reversed or will i be stuck with it only getting worse for the rest of my life!?
If anyone can offer some words of advice for fighting anxiety and depression, or some rational facts about my situation, it would be much appreciated😞 Thanks.
Hi Tom, thanks for the video. It is actually helpful to see someone living with it and getting treated who is living a normal life and talking about it.
Hi Kostas. I’m sorry about what you are going through at the moment, especially having a hard time with starting a lifelong treatment. I quite understand and I know that feeling. I was in a somewhat similar situation in 2022. Although, all my biomarkers and viral DNA levels were all good at that time and I wasn’t qualified to be placed on Tenofovir, but I wasn’t comfortable with with the fact that I wasn’t on treatment. I felt I wasn’t in control and at the mercy of the virus. But I decided with my doctor on Oct. 1 to begin TDF regardless. And you know what? Since then, I hardly get those feelings of malaise, myalgia, exhaustion, low grade temperature and so on. It’s amazing. I’m convinced that every adult who’s positive should be started off on treatment instead of waiting. I’m sure you’ll be fine Kostas on this new path. I’m sharing a link to my story and I do hope this helps.
Hi Prince, thanks for sharing and your video. That is so great that you’ve created a community to educate and discuss HBV in your community. Also thanks for sharing that you have been on medication/treatment and are having success. A lot of my fear comes from not knowing anyone who has been on treatment so it’s a very unknown territory for me. I hope to find more people like you here who have had success with treatment and can make it less scary for me.
I feel you, Kostis. If you didn’t have anxiety before, you’d have it now. If you had it…well, you know.
Regardless of what you may think right now, there’s light at the end of the tunnel and it doesn’t have to be a train. Seek medical advice ALWAYS.
As for side effects, a lot of people blame it on the meds while often is a result of the liver functions messing with you body and other organs.
Recovery for me was about 1yr…I know the full gamut of feelings from experience.
Chin up…you will get better and you will feel healthier than before. Patience and do your due diligence following doctors’orders. This site has a wealth of scientific information and a great support network…
Denny
I had an acute attack (nothing cute about it…lol) When first admitted I had none of the symptoms they expected to find and monitor. I was given all sorts of dietary advice/restrictions but with no solid guides to follow. And then it happened seemingly all at once. I lost about 50lbs in a VERY short time…all muscle mass vanished. I gained 40lbs back but it was all water retention. I was admitted to be drained. And then all your organs have to readjust…not pleasant.
I got muscle spasms all over, especially at night. I was told the Tenofovir was causing unbeatable itching , later found out it was just my body reacting to my liver malfunctioning. And then I became infested with lice but this wasn’t discovered by doctors. All along we had all assumed they were little blood blisters at the roots of hair follicles…til we noticed a couple had legs. Slept in the same bed as my wife for 5 weeks or so before we figured it out and she never got a single one!
Doctors told me to avoid sodium and sugars. So I started passing out. Realized I need SOME sugars. Sodium is in EVERYTHING. I finally learned through my liver specialist’s assistant that I had a target to stay under…2g/day. Doesn’t sound like much until I broke it down to 2,000mg. Doable by staying away from processed foods and fast foods and checking labels at the grocery store. I can have the occasional “cheat meal” but I make sure it’s under the daily limit and I stick with fruit the rest of the day…I don’t drink nor smoke…ever. Why push the envelope?
I work out with weights now and drink protein shakes and am at a comfortable weight and muscularity is back…it took time but my self-esteem is back, too.
It’s work every day but it’s doable. Hope you have a good experience with this slippery slope of an illness…
Reach out to Bansah on here, too…he is quite positive…in attitude.
Denny
You are always welcome Kostas. I’m sure you’ll find more than enough here. All the best.
Pharm. PRINCE O OKINEDO (FACi)
Founder/Team Lead,
Hepatitis Advocacy Foundation www.facebook.com/hepatitisadvocacyfoundation
+2347066233745
Member,
Community Advisory Board (CAB),
Hepatitis B Foundation. www.hepb.org
Member, National Executive Council of Civil Society Network on Hepatitis in Nigeria (CiSNH-Nig.) - Patient Voice Rep.
Chairman, CiSNH-Nig. C’ttee on Advocacy
Hi @ Caraline,
I already responded to the message by @kostas. I think he posted the same message under different topics or headings. But I did respond to one. Thanks, Bansah1
Thanks for sharing your story with us. I join the others in supporting you and confirming that you are not going through this alone. It will get better.
I wanted to answer some of the questions you’ve posed:
1 - I’ve been on treatment (TDF) for many years now and have had absolutely no issues with it. Just a pill a day and I don’t think about it at all. I haven’t seen any changes in my blood results to this day except my viral load being close to undetectable.
2 - The actual number isn’t bad, but it is more that the blood results represent a change in your system. Essentially your immune system will start to recognise and clear infected liver cells. It is expected to fluctuate (the virus load will go down as your immune system works), but that’s the potential issue.
3 - The liver values show there’s inflammation. Damage occurs when inflammation continues to happen over months to years. You now have the opportunity to halt the inflammation and help your liver recover over time from any damage that may have occurred.
Hi @ Prince_Okinedo
I completely agree with you that some people with CHB are afraid to start taking antiviral drugs as we know that there were rarely any effective treatments for CHB in the past as in the present time. It is only one pill per day compared to the use of interferon therapy which had many side effects and low efficacy with functional cure about 10% . From my own experiences, I had immune active phase of CHB at 30 years ago when I was 25 years old and I didn’t accepting interferon therapy at that time and finally turned to HBeAg seroconversion and immune control inactive carrier phase.However ,sometimes I had symptoms like fatigue, anorexia, loss of appetite, low grade fever that I thought it was not normal but couldn’t explain about these symptoms to be related with CHB. So , I had to wait and follow the antiviral drugs that were effective and had fewer side effects until around year 2000, the first drug that was used was Lamivudine, however, this drug was still not very effective due to drug resistance when used long term until the last 10years ago there were 3 high barriers of resistance and effective drugs with few side effects (TDF , TAF, Entecavir). Even though we have to take these antiviral drugs for life long, it is believed that it will be a long term use until a combination formula drugs are used which should be able to provide functional cure. After my CHB turned from immune control inactive carrier to immune reactivation phase with HBV DNA and ALT slightly elevated (1.5 x ULN) in 2019 , I didn’t hesitate and decided to start treatment with TAF , after that it changed my life with good quality of life and I think that this is the life changing drugs for eligible CHB patients that we treat as infectious diseases, not as liver diseases. This may be due to the fact that when our body immune systems are transient suppressed or weakened , there may have an increased amount of viral replication causing the body to have an immune response until the symptoms of mild hepatitis appears. The administration of antiviral drugs will help inhibit the replication of viruses, so after patients take antiviral drugs, they usually don’t have such symptoms to occur resulting in better quality of life. I think we have research gap about the use of antiviral CHB pre and post treatment that will probably give us the answer about quality of life and will advocate CHB patients with confidence in using antiviral drugs to treat CHB finally.
