@Joan_Block Thank you for your response. I’m glad that I came across this community and became a member of it. Originally I had wanted to join a Chinese online forum. Unfortunately I couldn’t find a good one that is active. One community of which I am a regular used to have a sub group dedicated to HBV but stopped due to the lack of traffic(this community is a commercial one that pursues the max traffic). I was very surprised by the fact that we lack good online communities in China as I believe we have the largest HBV infected population in the world. There should have been many. On the other hand this may be a good sign if we look at it from another perspective, which is that there may be less prejudice now than before in China. Some online communities here were set up campaigning for equal rights or privacy for HBV patients. Over the last decade or so, I did see some measures taken by the authorities to combat the unequal treatment towards HBV infected. The social and medical security system also offer insurance for drugs etc making them more affordable though to quite a large population of patients I would say the drugs are still expensive. But broadly speaking things are moving towards the right direction. As a result probably less people turn to online communities for help.
I think Interferon reduce the HCC risk by inducing a loss of HBsAg as suggested by Jacki. But it is a long shot. Only a tiny fraction of the patient can achieve that according to my research. I think this conclusion has been generally accepted. What I wanted to know is that whether it still holds if HBsAg loss is not achieved.
Your suggestion about the genotype was noted. I will discuss with my doctor next time. I’m sure there is going to be a full test beforehand to see if I can meet the criteria used to predict the outcome of Interferon on me.
But as you advised I will hold my decision till I get sufficient information.
Thank you for your kind words. Unfortunately it was very difficult for me to access Facebook as it was banned in China. But I can access the website you refer. I will check it later.
I will study the paper you referred. The side effects are indeed something that cannot be ignored. This is also one of the reasons that I am hesitating on if I should get Interferon. Statistically the benefit is negligible while the cost is very high. I shall carefully weigh those factors before making up my mind.
I will be pleased to get connected with you too. Anything I can help you with regarding what the Chinese experts are doing please let me know.
Hi Teferalov
I am glad to read from you. Your greetings are also well received. Do you have anything to share with us on hbv such as experience or expertise. We will be glad.
Kinoti
I was browsing the internet today and came across this page/group. I am 40 yrs and HBV chronic patient. I found out I was positive in 2013, I didn’t really know about the virus so I was not alarmed. I think I got it from birth or many years ago as a child in Africa. I know I have it for at least 19 years because my 19 years old son is positive as well. Innocent child got it from his mother. I am not sure if his mother gave it to me or I gave it to her. She is still in Africa and my son and I live in the USA. She and I dated when I was 20 years old.
I am currently being checked/screened every 6 months…my last screening was 2 weeks ago and the doctor said my viral load is 1000 ul with normal liver function and no sign of liver problem. So at this time no medication or therapy yet. I will keep on the screening. I am mentally prepared for the worst. I am married and luckily my wife doesn’t have it.
My hope is that a cure can be found in the near future and my son and others can benefit from it even if I am not alive by then. I am hoping things remain under control but if it gets elevated and meet the requirement for medications, I hope to get on medications immediately to prevent liver damage (my fear).
I am very active, I run routinely and exercise regularly. But as I am getting older, my body isn’t recovering fast enough. As a result, I really wish I could use supplements or medications to help my joints and other body parts for recovery so I can continue running and staying active. But I am afraid to take any supplements or medications that would affect my liver. I don’t get sick easily, not even with flu or common cold, or headache. Honestly, other than body and joints soreness from running, I am perfectly fine at this point. Mehn, this is worrisome to some extents knowing that things can go from 1-10 quickly. Every time I heard someone died from liver disease or cancer, it messes up my mood for days or weeks.
Thanks to Thomas and all of you for the courage. Only my wife and very few trusted friends know my status. From a small country in Africa and they are very quick to stigmatize people without the knowledge. Stay strong and keep hope alive.
Thanks for sharing your story and sounds like you are looking after yourself well with a great attitude. Welcome to the community and hope you find the support you need here.
Hi marks
I am happy to ear how strong and focused you are. This is a forum that will offer you alot of support. Welcome and as an African, we say “feel at home.”
Kinoti.
Hi Tefera megistu
I am delighted with the trust you have on me to answer to your concerns on chronic Hep b status and medications.
Moreover, I boast of only 20yrs hep b positive experience and fall short of medical expertise folks like Thomas Tu @Joan Tavis @Mark Douglas, @Chari Cohen@Professor lampartico@Dr Strasser et al posses.
With that said, I encourage you to be abit patient and you will definitely get appropriate response from the afore mentioned.
Sorry, I have not been of more help.
Kinoti
Hi, i am brand new to the site and newly diagnosed. My name is Tina Kerns. Ive had past history of boughts of kidney stones as well as one bought July and August of this year which included severe sepsis…
I began feeling ill again in Jan of 2022; worried that stones and sepsis had come back, went to ER to find out i have Hep B… I spent 9 days in hospital with abdominal pain as well as worst migraine of my life beginnung a week before ER visit through first week of my stay in hospital. January 21, 2022-Jan 30…orange urine’ pale feces, pain, fatigue and joint pain was given entecavir last 6 days in hospital at .5 mg… Discharged with self care and able to take care of myself… This lasted about 5 days then weakness significantly increased as did other symptoms…my ALT upon doc f/u was 2109 and AST was 1609 billirubin at 30. My jaundice was VERY LOUD and stayed that way for weeks… Weakness grew significantly. I have hip replacement on right side 15 years old. I stopped for prescription and while leaving i stepped off curb and collapsed. Needed aadssostance to get up. Wasnt hurt nbuut got in car and went straight home where i live alone…
That nite tring to use bathroom was able to walk there but, failed getting off toilet. Once fell and hit my head on drywall. The second time i hit my head on porcelean sink. Both times i had to literally crawl back to bed and use nitestand amd wall to get leverage to get back in bed. I then took ambulance to hospital. I am female 48 years old. Was re-admitted and currently, this admission, i will be on day 35 here. Initially i had portable toilet and could get up on my own, then to bedside commode and back again; until one day lost strength getting back to bed and i just kind of slowly slumped to floor. I was then restricted to bed with briefs and bedpan.
I had many issues with patient care this time… At night left in bed pan too many times ro count for over an hour and about 4 times i spent 3 hours waiting for help.
My doctor moved me to different hospital and things much better. The mersa i developed is clearing up patient care is amazing, PT which is consistant and same person.
In last 2 weeks ive develped nueropothy. Most of the time i cant feel my feet at all and if touched feels like its asleep with nails being driven thru them. Hands in constant pain; pins needles, feel much more swollen than they are. nuerology is working things up to see what can be fixed and what might ir-reverseable…i began gabapentin 3x/day at 100 mg and after one day already increased to 200mg…
Only symptoms i havent had are fever and loss of appetite; although i do get full faster…
Im sorry post so long but, as the song says everything is connected. Right now im just trying to wrap my head around this… Being told not to worry… Just keep doing my PT… I do not have support and live alone… As soon as i am able to travel, i will move back to Missouri with my dad and stepmom. The rest of my family are there too. Im just wondering how strange is this as ive read most people contracting this dont know they have it and get past it quickly…
I really was having a bad few days and finding ur support group has renewed my faith and hope.
THANK YOU…
Tina
Thanks for sharing your story and experiences. It sounds like you’ve been having a tough time with everything. Please feel free to reach out and post on this forum. I hope this community can help support you through your Hep B diagnosis as you grapple with it.
Hi there. My profile name is the date I was diagnosed. As you can see… just a few days ago. I’m in the US and unsure how long I’ve had it. Interestingly, the very day I was diagnosed was the same day my mother got MRI results of cysts on her liver and kidneys which makes me wonder if she too is hep B positive and this is how I got it. More to come as this unfolds. Grateful to be a part of a community as I navigate the unknowns.
Welcome to the community! I am sure the next days, weeks and months are going to be interesting for you, to say the least. Try not to stress too much while waiting for results and more testing. You have a great resource of information at your disposal within these forums as things progress for you.
I hope the experts will be able to guide you through this journey and the members of this forum can be a comfort to you as we all share this common bond called Hepatitis B.
Glad you found your way here. Good luck and God bless,
Welcome to hep b community. I am sincerely sorry to learn of the pain and frustration you are going through due to combination of challenges. Life sometimes can be tough. But we must put up a spirited fight to keep going.
Wish you all the best.
Regards
Kinoti
I living Dubai in Al Ain I am so happy to seen u all groups.