"Don't compare your chapter 1 with some else's chapter 20"

Hi All. Firstly very nice to meet you all, and thankyou for allowing me to be a part of this very special group.

I am South Asian by descent and born and raised in the UK. On my 16th birthday I decided to tick off a wish of mine to donate blood. The results picked up on my Hep B condition, initially my parents queried what my extra-curricular activities had been (which hurt at the time!) We eventually found my entire family had chronic Hepatitis B – probably carried over from one of my parents. Everyone’s viral loads took different journeys over the years – eventually my siblings natural immune system managed to fight it off and my elderly parents also reduced the virus following medication and are currently on Entecavir (Dad was also on interferon and Tenofovir previously).

Mine virus took a mutant strain very early on. My consultant wanted to medicate me early, and I refused for years. At 30, my viral loads were so high I had to be put on interferon injecting myself weekly for a year. The side effects of pegasys interferon was something I was not at all prepared for - the continual flu like feeling, appetite change, confusion, insomnia, hair loss are just some but not the worse…. The drug impacted hormone production, and eventually serotonin levels were so low I had a breakdown and was put anti depressants for 18 months. Another drug for my fuzzy brain to deal with. It was brain fog I most struggled with. It put my life on pause, and to a certain degree I have struggled to hit restart since – its been about 6 years since my last injection. I found my immune system really struggled to get back up, I have asthma also and every winter I am almost guaranteed an infection that knocks me out of action for a while. My viral levels stayed low not for long and crept back up to higher than before, once again I said no to treatment. In the last 2 months, I have started Tenofovir – I find my body is more susceptible to side effects of medication and have felt some on tenofovir also. (Nausea, brain fog, fatigue, faster heart beats). I am giving my body some time to adjust to the changes, and think they are surpassing slowly.

I frequently question why my body reacted so differently to my siblings, why didn’t I just clear it like everyone else who didn’t need medication. Both of my parents have kidney disease now too. I don’t talk about my condition, to anyone really – the stigma around it is really difficult to get your head around to deal with other people’s emotions about it. It’s the emotional journey. Learning to accept my virus as my own, just like I do my arm, my leg…. That acceptance took many decades, lots of anger and emotions and has bought me to some kind of equilibrium now. I am a very active person with a great love and fondness of fitness and nutrition – a big believer in eating and living well, and the body will heal – the medication often makes me feel like I want to eat more unhealthier. I know the health industry is so far ahead in the journey to a cure than when I first found out some 25 years ago.

Anyway, looking forward to hearing from you all. I know you all have been on similar journeys and it feels lighter already to read those. Thankyou Thomas for setting this forum up. Let our collective strength be a power for all.

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@Alpap,

I am sorry to hear of your struggles. I am the only one in my family with Hep B. I have been reluctant to start treatment even though my DNA levels started to increase over 2000 after I turned 40. My dna fluctuates so there have been times it would go <2000. I have seen several different hepatologists. I am waiting on my labs from last week but agreed to start Vemlidy if the dna is high. Are you on TAF (Vemlidy) or TDF (Viread)? I heard Vemlidy is better tolerated but no generic is available. That is great that you strive for a healthy lifestyle. I am sure that help you stave off other health problems. I wish I ate better and exercised more. Getting older, I am starting to see increases in my BP, glucose, and cholesterol. Living in the US, I am glad to have access to healthcare but it would be better if I were more committed to a healthy lifestyle sooner. I am grateful to the support of this community as well.

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hey @hope4us - thanks for reaching out. I am on Tenofovir Disoproxil aka TDF (Viread). The healthy lifestyle sure does help when I force it into the routine - I find changes in mood or life events tend to push me off my balance very quickly. For instance I am a part time care for my elderly parents and this year they have not been well - consequently I have not taken very good care of myself. Here’s a trick I have used in the past to get me back on track - I am a visual person - so I like to see timetables. i create a weekly chart - and pre plan some exercises and food plans I want to achieve that week. Keep it small and light - the momentum tends to build on its own. e.g. Monday I will do 5 press-ups and will not eat chocolate.

My consultant was good with her advice with me saying whilst my viral loads were increasing - my liver bloods and scans was still healthy - if there was a divergent there she perhaps would have pressed a little more for me to start earlier. I changed my opinion this time rounds to medicate quickly after reading hepatitis is more carcinogenic than cigarettes. My gallbladder also started showing a small Polyp. Whilst I have been very slow about starting med’s - my parents were not are are now viral loads undetectable.

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Hi Alpap
Sorry for the bumpy journey of Hep b you have walked.
I am happy for the peace of soul that you have gotten to after a well fought struggle. After the acceptance you now have you will have easy time with medications opening yourself with sincerity of :heart: for helping discussion with your doctor.
With that said @Alpap I welcome you in our community where we share our warmth.

Regards
Kinoti

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Welcome to the group @ALpap! I am distressed to hear of your struggles both with the disease and the stigma associated with it. I am an HBV researcher working on a new class of drugs for HBV, and hearing from the patients like you really helps motivate me to push forward as hard as I can. I hope the scientific and medical communities are able to generate new drugs to help you. As someone involved in that process, I can tell you that the effort worldwide is really powerful to develop cures for HBV. The research community is quite optimistic that improved therapies (hopefully curative) will be developed within a reasonable time.

John Tavis, PhD
Professor, Saint Louis University School of Medicine

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@john.tavis - that brings me comfort thankyou.

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