Aa
Need advice!
Hi everyone, I came upon this website just today. I'm just thrilled to see that there is an online community for Hepatitis B sufferers. Its a relief to know that I am not alone...
Anyways, a little background on my situation: I'm currently 24 years old and have had chronic Hepatitis B since birth (vertical transmission). Unfortunately, I didn't find this out until senior year in high school. By that time, my viral load was around 30 million or so copies per mL and my doctor started me on Hepsera (adefovir). Unfortunately, at that time, I was too focused on school and found myself occasionally missing doses. As a result of my negligence, I found out that my HBV had become resistant to the drug. Thus, my doctor decided to switch me to Baraclude (entecavir) and this time I was vigilant about my dosages (never missed one since I started the drug). Unfortunately, the best Baraclude ever got me was a DNA count of about 1000 copies per mL. Recently, I've been experiencing fluctuations, with the HBV DNA rising to about 2000 copies/mL (tested 1 year ago), falling back to about 1000 copies/mL (tested half a year ago) and jumping up to about 2000 copies/mL (tested just last week). My doctor attributed this pattern to the virus slowly gaining resistance to Baraclude. He suggested that I add on Viread (tenofovir), citing recent research which has showed the two drugs in combination to be very effective at keeping the HBV DNA load down.
My questions are these:
1. Should I listen to his advice? Since I have chronic Hep B, I'd have to take the two drugs for the rest of my life and its almost certain that the virus will eventually become resistant to both. However, I'm worried that the multi-resistance would come on faster if I take both at the same time as opposed to subsequently (ie: only taking Viread after Baraclude's effectiveness wears out). What do you guys think? Which method would be more effective?
2. I consulted a second opinion from a liver specialist and he said my doctor was a fool for making me take drugs so early on in my life (for the reason listed in question #1). He suggested that the best thing to do would have been to only take medicine when symptoms emerged (which, he said was usually around 50-60). Based on this advice, I'm screwed because I'm already on drugs. Thus, what do you guys think about me just continuing my Baraclude (I'm stuck taking it now), only to begin taking other drugs when my HBV starts causing symptoms?
3. I did not fast on my last blood test (the most recent). Would that cause some type of skewing of the data?
4. If my lowest load was about 1000 copies/mL, which is not even near the gold standard for "undetectable" (400 copies/mL), would that mean that Baraclude was simply not an effective drug for me?
5. For the last couple of months, I've felt a painless pulsing throb at my right lumbar region. It pulsates much harder when I'm stressed. Have any of you guys experienced this before? I'm afraid this could be some type of portal hypertension (but I had a ultrasound a few weeks back which showed a completely healthy and normal liver). Any thoughts?
Thank you so much for your help. This really *****, but c'est la vie!
Anyways, a little background on my situation: I'm currently 24 years old and have had chronic Hepatitis B since birth (vertical transmission). Unfortunately, I didn't find this out until senior year in high school. By that time, my viral load was around 30 million or so copies per mL and my doctor started me on Hepsera (adefovir). Unfortunately, at that time, I was too focused on school and found myself occasionally missing doses. As a result of my negligence, I found out that my HBV had become resistant to the drug. Thus, my doctor decided to switch me to Baraclude (entecavir) and this time I was vigilant about my dosages (never missed one since I started the drug). Unfortunately, the best Baraclude ever got me was a DNA count of about 1000 copies per mL. Recently, I've been experiencing fluctuations, with the HBV DNA rising to about 2000 copies/mL (tested 1 year ago), falling back to about 1000 copies/mL (tested half a year ago) and jumping up to about 2000 copies/mL (tested just last week). My doctor attributed this pattern to the virus slowly gaining resistance to Baraclude. He suggested that I add on Viread (tenofovir), citing recent research which has showed the two drugs in combination to be very effective at keeping the HBV DNA load down.
My questions are these:
1. Should I listen to his advice? Since I have chronic Hep B, I'd have to take the two drugs for the rest of my life and its almost certain that the virus will eventually become resistant to both. However, I'm worried that the multi-resistance would come on faster if I take both at the same time as opposed to subsequently (ie: only taking Viread after Baraclude's effectiveness wears out). What do you guys think? Which method would be more effective?
2. I consulted a second opinion from a liver specialist and he said my doctor was a fool for making me take drugs so early on in my life (for the reason listed in question #1). He suggested that the best thing to do would have been to only take medicine when symptoms emerged (which, he said was usually around 50-60). Based on this advice, I'm screwed because I'm already on drugs. Thus, what do you guys think about me just continuing my Baraclude (I'm stuck taking it now), only to begin taking other drugs when my HBV starts causing symptoms?
3. I did not fast on my last blood test (the most recent). Would that cause some type of skewing of the data?
4. If my lowest load was about 1000 copies/mL, which is not even near the gold standard for "undetectable" (400 copies/mL), would that mean that Baraclude was simply not an effective drug for me?
5. For the last couple of months, I've felt a painless pulsing throb at my right lumbar region. It pulsates much harder when I'm stressed. Have any of you guys experienced this before? I'm afraid this could be some type of portal hypertension (but I had a ultrasound a few weeks back which showed a completely healthy and normal liver). Any thoughts?
Thank you so much for your help. This really *****, but c'est la vie!
1
start viread+baraclue (entecavir)+ftc as soon as possible absolutely only if you have liver damage or alt/ast abnormal.
your doctor was a fool because you didn't need to start tx so young and when immune tollerant, change doctor abolutely.immune tollerant guide lines say no tx required...they don't work in this phase and not needed.
he even used wrong antivirals with high resistance profile, it is really a shame such doctors can keep making people worse and spread resistant viruses which are a danger for patients and public health which big mistakes as in your case
2 if you are in the immune tollerant phase and you have normal alt/ast and no liver damage on fibroscan stop all tx, the second doctor seems to be very good
3 just check if you have got virus mutations and resistance, bear in mind that if you have mutations these are very dangereous for other people so use protection when making sex.some mutations can be dangerous even for people vaccinated
4 in immune tollerant phase there is no immune reaction to help antivirals and there is a lot of virus, the good point of immune tollerant phase is that virus is not causing any damage to the liver and it is not dangerous for you so you just need to monitor when your immune system starts fighting the virus and then start tx.
hbv virus doesn't cause any damage to the liver, it is the immune system that destroys infected cells of the liver to eradicate the virus from the body.in CHB immune system has a mulfunction caused by hbv and cannot eradicate virus
5
i also got hbv at birth and there are almost no syntoms correlated with liver health, i sometimes feel some pain in the same region as you but it is very mild and not correlated to liver health
start viread+baraclue (entecavir)+ftc as soon as possible absolutely only if you have liver damage or alt/ast abnormal.
your doctor was a fool because you didn't need to start tx so young and when immune tollerant, change doctor abolutely.immune tollerant guide lines say no tx required...they don't work in this phase and not needed.
he even used wrong antivirals with high resistance profile, it is really a shame such doctors can keep making people worse and spread resistant viruses which are a danger for patients and public health which big mistakes as in your case
2 if you are in the immune tollerant phase and you have normal alt/ast and no liver damage on fibroscan stop all tx, the second doctor seems to be very good
3 just check if you have got virus mutations and resistance, bear in mind that if you have mutations these are very dangereous for other people so use protection when making sex.some mutations can be dangerous even for people vaccinated
4 in immune tollerant phase there is no immune reaction to help antivirals and there is a lot of virus, the good point of immune tollerant phase is that virus is not causing any damage to the liver and it is not dangerous for you so you just need to monitor when your immune system starts fighting the virus and then start tx.
hbv virus doesn't cause any damage to the liver, it is the immune system that destroys infected cells of the liver to eradicate the virus from the body.in CHB immune system has a mulfunction caused by hbv and cannot eradicate virus
5
i also got hbv at birth and there are almost no syntoms correlated with liver health, i sometimes feel some pain in the same region as you but it is very mild and not correlated to liver health
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