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Question about combo therapy, and alternative treatment
Hi everyone! Here's my story: I've been a Hep B carrier since birth and recently my doctor has told me my HBV DNA level is about 300 million copies/ml. He told me I have to take Entacavir/Baraclude, which I may have to take my whole life. I am still very young and it's scary to know I can develop liver cancer at any time. I'm considering asking my doctor on my next visit to try combo therapy, but I'm worried that the doctor might not know much about it and may reject my idea altogether. Even if I knew what drug to take with Entecavir (which I don't), I would not be able to pay for it without an approval from my insurance company (Fidelis) right? I don't know what I should tell my doctor.
On a side note, my current treatment regimen also includes boiled worms and an herb called Acorus, both said to be beneficial to liver function. I use something from China called Levamisole Hydrochloride Liniment, which is an ointment applied on the skin of the thighs. It claims to help reduce Hep B virus counts. Anyone have experience with these alternative treatments and know whether they work?
Any help will be greatly appreciated.
On a side note, my current treatment regimen also includes boiled worms and an herb called Acorus, both said to be beneficial to liver function. I use something from China called Levamisole Hydrochloride Liniment, which is an ointment applied on the skin of the thighs. It claims to help reduce Hep B virus counts. Anyone have experience with these alternative treatments and know whether they work?
Any help will be greatly appreciated.
Hi,
I think the most effective way to reduce HBV DNA level is to be a vegetarian. I have had hep b for more than 10 years. At the begining, it was undetectable, but infected. It then increases every so often. About 2 years ago, it increased to more than 4 thousand. My doctor suggested to me to start treatment, but I never did. Then a year and half ago, I turned vegetarian, but I do eat eggs, and milk. The last test shows I have only 520 copies.
I think the most effective way to reduce HBV DNA level is to be a vegetarian. I have had hep b for more than 10 years. At the begining, it was undetectable, but infected. It then increases every so often. About 2 years ago, it increased to more than 4 thousand. My doctor suggested to me to start treatment, but I never did. Then a year and half ago, I turned vegetarian, but I do eat eggs, and milk. The last test shows I have only 520 copies.
"Okay, I've heard that a liver biopsy is somewhat risky but I scheduled an appointment anyway."
I heard it's very safe. Heard the hardest part is the wait to go home.
"Is the liver damage caused by high viral load reversible?"
Depends on the degree of the damage. At your age, you liver should be in great shape despite being born with HepB.
"And is it true that by adding on an extra med to Entecavir, like Tenovir for combo therapy I'm damaging my liver further?"
Read nothing about that. The HepB virus will damage your liver more than the meds.
I heard it's very safe. Heard the hardest part is the wait to go home.
"Is the liver damage caused by high viral load reversible?"
Depends on the degree of the damage. At your age, you liver should be in great shape despite being born with HepB.
"And is it true that by adding on an extra med to Entecavir, like Tenovir for combo therapy I'm damaging my liver further?"
Read nothing about that. The HepB virus will damage your liver more than the meds.
[quote=zellyf]
There may be some liver damage with a high viral load even in the absence of elevated liver enzymes. A biopsy could be helpful in determining if this is happening to you and if it isn't then attempting a natural seroconversion might be a desirable option. Natural seroconversion tends to be more stable. [/quote]
Okay, I've heard that a liver biopsy is somewhat risky but I scheduled an appointment anyway. Is the liver damage caused by high viral load reversible? And is it true that by adding on an extra med to Entecavir, like Tenovir for combo therapy I'm damaging my liver further?
There may be some liver damage with a high viral load even in the absence of elevated liver enzymes. A biopsy could be helpful in determining if this is happening to you and if it isn't then attempting a natural seroconversion might be a desirable option. Natural seroconversion tends to be more stable. [/quote]
Okay, I've heard that a liver biopsy is somewhat risky but I scheduled an appointment anyway. Is the liver damage caused by high viral load reversible? And is it true that by adding on an extra med to Entecavir, like Tenovir for combo therapy I'm damaging my liver further?
There may be some liver damage with a high viral load even in the absence of elevated liver enzymes. A biopsy could be helpful in determining if this is happening to you and if it isn't then attempting a natural seroconversion might be a desirable option. Natural seroconversion tends to be more stable.
>>>What are all the risks of having a high DNA level while in the immuno-tolerant stage?
At the immuno-tolerant stage your body may control HBV without medication and put you in inactive stage.
High DNA level is associated with more liver damage and more severe disease progression.
>>>And what are the risks/downsides of going on combo therapy?
Medications are chemicals. If you take more, your body(liver) has to labor more to clear them from your body, you may have more side effects, etc.
Best wishes.
At the immuno-tolerant stage your body may control HBV without medication and put you in inactive stage.
High DNA level is associated with more liver damage and more severe disease progression.
>>>And what are the risks/downsides of going on combo therapy?
Medications are chemicals. If you take more, your body(liver) has to labor more to clear them from your body, you may have more side effects, etc.
Best wishes.
What are all the risks of having a high DNA level while in the immuno-tolerant stage? Will it affect my other body functions? And what are the risks/downsides of going on combo therapy? It's been nearly 2 months since I've started taking Entecavir. If it's not too late to stop I will definitely do it, under professional guidance of course. On my next visit I'll ask for my eAntigen status.
Btw you've all been so helpful, especially Steven. I don't see any "clutter" here like on some other forums.
Btw you've all been so helpful, especially Steven. I don't see any "clutter" here like on some other forums.
So your doctor, saw on the lab that you have HepB. Did one set of labs, showing ALT 29 (which is normal), then saw your high viral load, and decided to treat. Doctor was uncomfortable by the high VL.
Not surprisingly, your presentation / labs are indicative of someone in the immuno-tolerance phase of the disease. As I said before, I would not have treated in this case. You have to weight the benefits of treatment with the risk of antiviral resistance. If you doctor dismisses this concern, I would shop around for second opinion.
And you could definately stop treatment after you start. I'm hoping to come off meds in time. You just need to monitor your ALTs closely. If your DNA starts to climb back up (and it will) after you stop meds and your ALT keeps a solid 29 with regular checks, I think you're good to go. Monitor yourself for the immuno-clearance phase and restart treatment.
And please do remember (again), I'm not a doctor.
Not surprisingly, your presentation / labs are indicative of someone in the immuno-tolerance phase of the disease. As I said before, I would not have treated in this case. You have to weight the benefits of treatment with the risk of antiviral resistance. If you doctor dismisses this concern, I would shop around for second opinion.
And you could definately stop treatment after you start. I'm hoping to come off meds in time. You just need to monitor your ALTs closely. If your DNA starts to climb back up (and it will) after you stop meds and your ALT keeps a solid 29 with regular checks, I think you're good to go. Monitor yourself for the immuno-clearance phase and restart treatment.
And please do remember (again), I'm not a doctor.
I think your ALT is low to warrant a start of treatment. Antiviral effectiveness heavily dependent on ALT & DNA VL, you start treatment when the immune start attacking the virus and same time injure your liver. Need to discuss with your dr further.....
Okay, here are my lab results before I started taking my antiviral.
Tests Results Units Reference Interval
Hepatic Function Panel (7)
Protein, Total, Serum 7.6 g/dL 6.0-8.5
Albumin, Serum 4.7 g/dL 3.5-5.5
Bilirubin, Total 0.6 mg/dL 0.1-1.2
Bilirubin, Direct 0.14 mg/dL 0.00-0.40
Alkaline Phophatase, S 65 IU/L 25-150
AST (SGOT) 27 IU/L 0-40
ALT (SGPT) 29 IU/L 0-55
Did my doctor do the right thing in prescribing me Entecavir based on these findings?
Tests Results Units Reference Interval
Hepatic Function Panel (7)
Protein, Total, Serum 7.6 g/dL 6.0-8.5
Albumin, Serum 4.7 g/dL 3.5-5.5
Bilirubin, Total 0.6 mg/dL 0.1-1.2
Bilirubin, Direct 0.14 mg/dL 0.00-0.40
Alkaline Phophatase, S 65 IU/L 25-150
AST (SGOT) 27 IU/L 0-40
ALT (SGPT) 29 IU/L 0-55
Did my doctor do the right thing in prescribing me Entecavir based on these findings?
You are correct since you started several treatments at the same time it is hard to tell which one(s) cause the lab change. Still it can be useful to keep your records for comparison in case someone else used all but one treatment that you used, etc.
Please read zellyf and Ann8's advice about not stopping medication without monitoring.
Best wishes.
Please read zellyf and Ann8's advice about not stopping medication without monitoring.
Best wishes.
You can't stop taking the antiviral once you started it. You need to monitor your VL carefully before you change your medication.You need to consult your dr before stopping as the VL could flare up in few days time. Since you started out mono therapy, if you like to go combo you could easily add on to it later on instead of stopping......Ideally you should start out with combo to reduce viral resistance. ALT level is important to determine treatment effectiveness. High VL + ALT to start treat....
When you say you will stop you mean under a doctor's supervision? You have to be careful about flares if you stop suddenly with some meds. Some require a tapering off.
Thank you all for your input.
From Cajim:
Could you share your experience with Levamisole Hydrochloride Liniment, boiled worms, and Acorus?
Sry Cajim, I just started using them. The thing is I don't have any Hep B symptoms manefesting so it's pointless for me to keep track. On my next lab report, one would assume that the reduced HBV DNA level will be due to taking Entecavir. What I can tell you is that I've not experienced side effects with these alternative treatments.
Steven, I'm assuming when you say that my ALT level is "in range" you mean that it's within normal limits. You're probably right about me being in the immuno-tolerant stage.I've done a ultrasound on my liver in the past month and the results showed an undamaged liver. After reading your post, I'm now considering stopping Entecavir pending my current ALT level reading. If it's high I'll have to try and convince my doctor to start me on combo therapy. Now this is nothing more than my own guess, but let's say I stopped taking Entacavir, wouldn't the virus have nothing left to adapt to? It would make sense that the HBV would have about as much "knowledge" of Entacavir after I start the drug the 2nd time in my immuno-clearance stage as when I stopped taking it the first time.
From Cajim:
Could you share your experience with Levamisole Hydrochloride Liniment, boiled worms, and Acorus?
Sry Cajim, I just started using them. The thing is I don't have any Hep B symptoms manefesting so it's pointless for me to keep track. On my next lab report, one would assume that the reduced HBV DNA level will be due to taking Entecavir. What I can tell you is that I've not experienced side effects with these alternative treatments.
Steven, I'm assuming when you say that my ALT level is "in range" you mean that it's within normal limits. You're probably right about me being in the immuno-tolerant stage.I've done a ultrasound on my liver in the past month and the results showed an undamaged liver. After reading your post, I'm now considering stopping Entecavir pending my current ALT level reading. If it's high I'll have to try and convince my doctor to start me on combo therapy. Now this is nothing more than my own guess, but let's say I stopped taking Entacavir, wouldn't the virus have nothing left to adapt to? It would make sense that the HBV would have about as much "knowledge" of Entacavir after I start the drug the 2nd time in my immuno-clearance stage as when I stopped taking it the first time.
Yep, I was between 33-38 when I was infected. When I was 32 we adopted our son from Russia and unbeknownst to us he had HBV. Five years later our oldest son came down with HepB and we were all testd then. That's when I found that I was a carrier. I can't ever seem to remember the specifics of my case,(e-antigen,surface antigen, etc.), but whatever it is, it's the worse case scenario.
shawzam, do you know your e-antigen status? Were you infected at age 38? The course of infection in adults is different than in children. Usually infection as an adult would mean an acute infection where you were sick and then you would have cleared the e-antigen but for some reason not the surface antigen. Children don't typically have an immune response to the virus so they hold onto the e-antigen until the body is mature enough to recognize the virus as a problem.
The posts to Sylvalant brings up some questions that I have.
I tested positive for HBV in 1998 when I was 38 years old. I became active in 2006. My labs have consistently shown my ALTs are normal, and my VL is in the hundred millions. Eventho I'm now 48 years old, because I've only had HepB for 10-15 years, is there a possibility that I could still be in the immuno-tolerant stages?
I did a year of Pegasys Inteferon that didn't work and am have recently started on Entecavir but haven't had the first labs yet to know how it's working.
Typo alert:
I don't think treatment decisions could be adjusted if need be since you don't have any resistance to antivirals at this point.
Should be:
I THINK treatment decisions could be adjusted if need be since you don't have any resistance to antivirals at this point.
Scared you there again....hahaha...sorry about that.
I don't think treatment decisions could be adjusted if need be since you don't have any resistance to antivirals at this point.
Should be:
I THINK treatment decisions could be adjusted if need be since you don't have any resistance to antivirals at this point.
Scared you there again....hahaha...sorry about that.
I realized that your anxiety probably peaked when your read my post. It need not be. You are acutally doing good. You are learning about this early, so you are already ahead of most people with chronic HepB. I don't think treatment decisions could be adjusted if need be since you don't have any resistance to antivirals at this point. Now you you wrote, I have resistance to lamivudine after taking it for 9 months....then...oh boy...that would not be good. So you are in good shape. Also everybody in your immediate family should check for HepB. It tends to run in the family ;)
I see that you updated your profile. 21 year old Chinese with chronic HepB infection from birth.
Unless the 300 million viral load is coupled with persistently elevated ALT, I would NOT treat. Because at 21 you are likely in the immuno-tolerant stage of the disease, where your immune system is ignoring the virus and it just replicates, without much liver cell injury. Some people in this stage could have DNA in the billions.
The challenge with treatment at this stage is that you don't get much help from your immune system. The virus is replicating in full force and you are using antiviral to hold it down only. The problem here is a higher risk of developing resistance to the antiviral since you may need to stay on the antiviral until you enter the next phase of the disease (the immuno-clearance phase) where your immune system finally attacks the virus. This is the phase also where the "e" Seroconversion process is suppose to take place. But this next phase often occurs in the 3-4 decade of life for an infection such as yours. So if you decide to treat, you have to think about resistance since you are 21, you may need at least 9 years (probably more) of antiviral treatment without resistance. Monotherapy + immuno-tolerant phase + no help from immune system + high DNA = greater adaptive power by virus. Entecavir has an excellent resistance profile but research hasn't reached after 5 years of use. You are looking at at least 9 years of use.
Now you ask, what would happen if my ALT was in range and I didn't treat in the immuno-tolerant phase? You will enter the immuno-clearance phase naturally with a gigantic viral load. Your immune system and virus goes to war, your liver cell injury occurs, and your ALT goes up. Most people even without treatment, their immune system would gain the upper hand and put you in the inactive phase of the disease (which is what we all want). That is why people want to treat in the immuno-clearance stage, to give your immune system a little help and speed up the "e" Seroconversion process. The treatment endpoint is often confirming a successful eSeroconversion.
Since you already introduced Entecavir for 1 month, I don't know what would be the consequences for stopping. Would the virus "remember" Entecavir and make it easier to overcome it in future use? That I don't know. Personally, if you had in range ALTs before, I would ask a knowledgeable doctor about stopping and monitor the ALTs regularly. If it stays in range, come off the treatment and reconsider treatment when your ALT goes up persistently as that would suggest your progression to the immuno-clearance stage.
If your doctor don't think your should come off, you should definately consider combo treatment. Ask to combo it with Tenofovir or at a minimum Adefovir. As I explained resistance would be your primary concern.
The only justification of treating in the immuno-tolerant stage with in range ALT is to drop the DNA since high DNA is correlated with higher risk for liver cancer. But the risk for liver cancer is increased with older age, say after 40 years old (which is after the immuno-clearance stage). So what in HepB that out you at greater risk for liver cancer? I don't know. So I don't favor treatment in the immuno-tolerant stage.
Just a NY Mets fan...so talk to your doctor. Good luck.
Unless the 300 million viral load is coupled with persistently elevated ALT, I would NOT treat. Because at 21 you are likely in the immuno-tolerant stage of the disease, where your immune system is ignoring the virus and it just replicates, without much liver cell injury. Some people in this stage could have DNA in the billions.
The challenge with treatment at this stage is that you don't get much help from your immune system. The virus is replicating in full force and you are using antiviral to hold it down only. The problem here is a higher risk of developing resistance to the antiviral since you may need to stay on the antiviral until you enter the next phase of the disease (the immuno-clearance phase) where your immune system finally attacks the virus. This is the phase also where the "e" Seroconversion process is suppose to take place. But this next phase often occurs in the 3-4 decade of life for an infection such as yours. So if you decide to treat, you have to think about resistance since you are 21, you may need at least 9 years (probably more) of antiviral treatment without resistance. Monotherapy + immuno-tolerant phase + no help from immune system + high DNA = greater adaptive power by virus. Entecavir has an excellent resistance profile but research hasn't reached after 5 years of use. You are looking at at least 9 years of use.
Now you ask, what would happen if my ALT was in range and I didn't treat in the immuno-tolerant phase? You will enter the immuno-clearance phase naturally with a gigantic viral load. Your immune system and virus goes to war, your liver cell injury occurs, and your ALT goes up. Most people even without treatment, their immune system would gain the upper hand and put you in the inactive phase of the disease (which is what we all want). That is why people want to treat in the immuno-clearance stage, to give your immune system a little help and speed up the "e" Seroconversion process. The treatment endpoint is often confirming a successful eSeroconversion.
Since you already introduced Entecavir for 1 month, I don't know what would be the consequences for stopping. Would the virus "remember" Entecavir and make it easier to overcome it in future use? That I don't know. Personally, if you had in range ALTs before, I would ask a knowledgeable doctor about stopping and monitor the ALTs regularly. If it stays in range, come off the treatment and reconsider treatment when your ALT goes up persistently as that would suggest your progression to the immuno-clearance stage.
If your doctor don't think your should come off, you should definately consider combo treatment. Ask to combo it with Tenofovir or at a minimum Adefovir. As I explained resistance would be your primary concern.
The only justification of treating in the immuno-tolerant stage with in range ALT is to drop the DNA since high DNA is correlated with higher risk for liver cancer. But the risk for liver cancer is increased with older age, say after 40 years old (which is after the immuno-clearance stage). So what in HepB that out you at greater risk for liver cancer? I don't know. So I don't favor treatment in the immuno-tolerant stage.
Just a NY Mets fan...so talk to your doctor. Good luck.
Yes, please post your labs. Your questions are excellent and steven may be able to give you some great insight. What is your e-antigen status? With your DNA I'm guessing you are positive.
See first link suggested by cajim:
http://www.medhelp.org/posts/show/458687
Skip the 2nd link. You are not ready for that yet. It's too technical and won't make much sense to you at this point. Gather your labs first. Your ALTs and HBV DNA. It's not a good idea to base treatment on one set of labs, especially when you don't even know your ALT.
Also, if you haven't start Entecavir yet, I would ask your doctor to see if you could wait a few days to research it. Because you want to make sure you are one who really needs treatment. There are many factors in deciding treatment.
You say you are very young. How old are you? It's important.
And my disclosure again...and again:
I'm not a doctor, just a regular NY Mets fan.
http://www.medhelp.org/posts/show/458687
Skip the 2nd link. You are not ready for that yet. It's too technical and won't make much sense to you at this point. Gather your labs first. Your ALTs and HBV DNA. It's not a good idea to base treatment on one set of labs, especially when you don't even know your ALT.
Also, if you haven't start Entecavir yet, I would ask your doctor to see if you could wait a few days to research it. Because you want to make sure you are one who really needs treatment. There are many factors in deciding treatment.
You say you are very young. How old are you? It's important.
And my disclosure again...and again:
I'm not a doctor, just a regular NY Mets fan.
Could you share your experience with Levamisole Hydrochloride Liniment, boiled worms, and Acorus?
1. What were your lab readings prior to using them?
2. When did you start use them? frequency? dosage? time of day?
3. How did you feel in terms of symptoms? side effects?
4. What were your during and after treatment lab readings?
5. Were you at the same time using other treatment(s)?
Thank you.
1. What were your lab readings prior to using them?
2. When did you start use them? frequency? dosage? time of day?
3. How did you feel in terms of symptoms? side effects?
4. What were your during and after treatment lab readings?
5. Were you at the same time using other treatment(s)?
Thank you.
Anyone have experience with these alternative treatments and know whether they work?
If you are trying other treatments, it would be helpful if you take detailed notes of how you feel and take regular tests to monitor your progress. It would help the community if you share your progress here.
Regarding combo therapy, reading the following will give you some information.
http://www.medhelp.org/posts/show/458687
http://www.medhelp.org/posts/show/492008
Hope this helps.
If you are trying other treatments, it would be helpful if you take detailed notes of how you feel and take regular tests to monitor your progress. It would help the community if you share your progress here.
Regarding combo therapy, reading the following will give you some information.
http://www.medhelp.org/posts/show/458687
http://www.medhelp.org/posts/show/492008
Hope this helps.
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