Aa
When to start treatment...
I am asian male 33 and have had chornic hep b probably from birth (adopted so no parental records to work off of).
I finally got to a specialist and am a litlte concerned because I get mixed feelings from different specialists... sometimes it's "oh definitely start medication right now" and sometimes more "well it's pretty early stages of damage, we can monitor and see, but it wouldn't be a bad idea to start treatment".
This has been going on and off for 3 years now as I battle between trying to get myself to start the treatment.
A big part of me has a problem with this though - current treatments have 0% tolerance after 7 years but I am told that if you ever stop your virus kicks back in super strong... this brings me to two fears:
1 I am not the most attentive person and as important as this deatil is I could easily see myself heading out for vacation to another country for a few weeks and forgetting/losing my pills
2 I appreciate that the tolerance for tenofovir is low but it's entirely possible that I develop a tolerance in my expected lifetime... at which point what? The best my specialist can say is we can fall back on other drugs, but even then I may well outlive those drugs...
I am trying to dig up my history now but at one point a few years ago I was a stage 2 on a 6 stage scale of cirossis (very mild but starting) and liver enzymes were HIGH in the 200's sometimes. Viral load in the 5 million plus I believe. Really high on all counts anyway... (sorry about vagueness like I said trying to get my records online right now and going off memory).
On top of regular hep b I apparently have mutated hep b also.
I was very overweight at the time (5'10 and 240) and have since droped to 180 to fight high blood pressure... the result was that during a recent biopsy the doctor asked when I had started treatment... I told him I hadn't and he said my enzyme levels were way down (60-80 I believe) and he thinks I may have been suffering liver damage from fatty liver disease and not so much the hep.
Viral load has also been steading declining and is 1.2 mill last count.
Back to my hep specialist, he looks at it and says he still says I should start treatment. He thinks also this last biopsy probably showed inacruately favorable scarring and scirocis...
This all makes me feel uneasy...
Add to this he is sponsoring a trial involving pegalated interferon and tenofovir and has me currently signed up for it(haven't started treatment yet) and assures me he has no interest whether I partake or not but it makes me uneasy too...
I actaully had another doc for a while because I wasn't wild about the way this guy works (always feels like he is explaining to me what he would want answered and not as much what I want answered) but that doc moved out of state and this guy is apprently still one of the best in the area for asian hep b.
My big concern is I have to wonder why it's a good idea to start treatment when damage is relatively low instead of monitoring and starting treatment when damage gets worse?
If I am going to develop a tolerance (it's a maybe and over a long enough time it seems likely) why would I start the clock ticking now rather than when things are bad?
Or is it the kind of thing that can get up on you so fast that it's not worth the risk?
I don't want to be penny wise pound foolish by trying to play the waiting and timing game, but on the other hand I don't want to start medication for no good reason possibly screwing myself down the road.
He is saying I need to decide which direction to go... he says he isn't irritated that he and his colegues have spent so long talking to me (he spends an hour a session sometimes which is quite long for a specialist I believe) and I am still flip flopping on whether I start treatment and has said I really need to decide which way to go. He assure se they will do their best to help me no matter what (ie I chose to monitor and not treat or I choose treatment or I choose trial) and I have indeed been waffling for 3 year snow so I don't think that's particularly uncalled for bu tI can't shake these cold feet.
Is there a chance I should hold out? I should play the timing game, get lots of blood tests and ultrasounds and stay off drugs as long as I can?
Or is that foolish and chasing dreams of self sero converting that is almost certain not to happen and risking my health?
I would love to becured of Hep B but I believe my demographic is very low on the likliehood scale to convert (asian with mutated hep b) so I am not really feeling the biggest selling point he is putting ou tthere (which is how great it would be at 33 to be "cured").
I saw a post a few down whihc mentioned taht someone in LA had to go without tinofovir for a few weeks due to drug shortage... that worries me too... anything is possible and I have heard of some pretty nasty drug shortages recently...
Thanks for any help and advice!
I finally got to a specialist and am a litlte concerned because I get mixed feelings from different specialists... sometimes it's "oh definitely start medication right now" and sometimes more "well it's pretty early stages of damage, we can monitor and see, but it wouldn't be a bad idea to start treatment".
This has been going on and off for 3 years now as I battle between trying to get myself to start the treatment.
A big part of me has a problem with this though - current treatments have 0% tolerance after 7 years but I am told that if you ever stop your virus kicks back in super strong... this brings me to two fears:
1 I am not the most attentive person and as important as this deatil is I could easily see myself heading out for vacation to another country for a few weeks and forgetting/losing my pills
2 I appreciate that the tolerance for tenofovir is low but it's entirely possible that I develop a tolerance in my expected lifetime... at which point what? The best my specialist can say is we can fall back on other drugs, but even then I may well outlive those drugs...
I am trying to dig up my history now but at one point a few years ago I was a stage 2 on a 6 stage scale of cirossis (very mild but starting) and liver enzymes were HIGH in the 200's sometimes. Viral load in the 5 million plus I believe. Really high on all counts anyway... (sorry about vagueness like I said trying to get my records online right now and going off memory).
On top of regular hep b I apparently have mutated hep b also.
I was very overweight at the time (5'10 and 240) and have since droped to 180 to fight high blood pressure... the result was that during a recent biopsy the doctor asked when I had started treatment... I told him I hadn't and he said my enzyme levels were way down (60-80 I believe) and he thinks I may have been suffering liver damage from fatty liver disease and not so much the hep.
Viral load has also been steading declining and is 1.2 mill last count.
Back to my hep specialist, he looks at it and says he still says I should start treatment. He thinks also this last biopsy probably showed inacruately favorable scarring and scirocis...
This all makes me feel uneasy...
Add to this he is sponsoring a trial involving pegalated interferon and tenofovir and has me currently signed up for it(haven't started treatment yet) and assures me he has no interest whether I partake or not but it makes me uneasy too...
I actaully had another doc for a while because I wasn't wild about the way this guy works (always feels like he is explaining to me what he would want answered and not as much what I want answered) but that doc moved out of state and this guy is apprently still one of the best in the area for asian hep b.
My big concern is I have to wonder why it's a good idea to start treatment when damage is relatively low instead of monitoring and starting treatment when damage gets worse?
If I am going to develop a tolerance (it's a maybe and over a long enough time it seems likely) why would I start the clock ticking now rather than when things are bad?
Or is it the kind of thing that can get up on you so fast that it's not worth the risk?
I don't want to be penny wise pound foolish by trying to play the waiting and timing game, but on the other hand I don't want to start medication for no good reason possibly screwing myself down the road.
He is saying I need to decide which direction to go... he says he isn't irritated that he and his colegues have spent so long talking to me (he spends an hour a session sometimes which is quite long for a specialist I believe) and I am still flip flopping on whether I start treatment and has said I really need to decide which way to go. He assure se they will do their best to help me no matter what (ie I chose to monitor and not treat or I choose treatment or I choose trial) and I have indeed been waffling for 3 year snow so I don't think that's particularly uncalled for bu tI can't shake these cold feet.
Is there a chance I should hold out? I should play the timing game, get lots of blood tests and ultrasounds and stay off drugs as long as I can?
Or is that foolish and chasing dreams of self sero converting that is almost certain not to happen and risking my health?
I would love to becured of Hep B but I believe my demographic is very low on the likliehood scale to convert (asian with mutated hep b) so I am not really feeling the biggest selling point he is putting ou tthere (which is how great it would be at 33 to be "cured").
I saw a post a few down whihc mentioned taht someone in LA had to go without tinofovir for a few weeks due to drug shortage... that worries me too... anything is possible and I have heard of some pretty nasty drug shortages recently...
Thanks for any help and advice!
Tell me about it... @_@
So this gets better.. I jsut talked to the nurse in charge of studies at the center and she spent a good half 45 minutes talking to me and guess what?
She is all confused now.
First she says I am genotype C... which I could have sworn I was D but maybe I just thought that because I am Chinese... I am confused there...
Then she says I am ev+ and pre core mutant...
And then she says that makes no sense... reads the notes and says that stil makes no sense...
This is a big deal to me becuase my understanding is pre core mutatns have a much lower success rate of clearing virus and so makes me less interested in medication as the likely end point is less likely to be clear virus.
So she is going to look into my chart some more and try to figure out what's up with that....
Now I am more confused until I hear back more on this whole ordeal... I don't believe the doc would just make that up so maybe it's a transcription error but I am all confused again.
BTW I just want to say anyone who is getting frustrated I am going in circles more and more and maybe not taking your advice or something, I am sorry, I don't know that I will come to a conclusion any time soon. I am using you all as sounding boards and helpful ears so hopefully you can accept that I am asking for advice with no promise of taking it either sooner or later...
So this gets better.. I jsut talked to the nurse in charge of studies at the center and she spent a good half 45 minutes talking to me and guess what?
She is all confused now.
First she says I am genotype C... which I could have sworn I was D but maybe I just thought that because I am Chinese... I am confused there...
Then she says I am ev+ and pre core mutant...
And then she says that makes no sense... reads the notes and says that stil makes no sense...
This is a big deal to me becuase my understanding is pre core mutatns have a much lower success rate of clearing virus and so makes me less interested in medication as the likely end point is less likely to be clear virus.
So she is going to look into my chart some more and try to figure out what's up with that....
Now I am more confused until I hear back more on this whole ordeal... I don't believe the doc would just make that up so maybe it's a transcription error but I am all confused again.
BTW I just want to say anyone who is getting frustrated I am going in circles more and more and maybe not taking your advice or something, I am sorry, I don't know that I will come to a conclusion any time soon. I am using you all as sounding boards and helpful ears so hopefully you can accept that I am asking for advice with no promise of taking it either sooner or later...
clinical trial-is it Dr Anna Lok?
this is a good liver specialist althouh conservative views doctor, if you can afford you should go personalized treatment not trials
as others did you should post all tests results by date, so we finally understand it all
this is a good liver specialist althouh conservative views doctor, if you can afford you should go personalized treatment not trials
as others did you should post all tests results by date, so we finally understand it all
I must say you are just as confusing as you were at the beginning. LOL.
I am tempted to ask you about your doctor who is in charge of the PEGIFN/TNF clinical trial-is it Dr Anna Lok?
I am tempted to ask you about your doctor who is in charge of the PEGIFN/TNF clinical trial-is it Dr Anna Lok?
HEP BE AB SEE NOTE Result: NON-REACTIVE
this means you are hbeag pos and better results to clear hbv as posted earlier
this means you are hbeag pos and better results to clear hbv as posted earlier
And now I am concerned as I don't see my HBeAg test... I think the results I have access to are limited as I am sure I saw it before...
This is very interesting... it's said I live several hundred miles from the nearest fibroscan...
Just looking over my test results and don't see anything precore named...
Ones I haven't mentioned and don't recognize are
HEP BE AB SEE NOTE Result: NON-REACTIVE
Hep B Surface Ab 1.94 >10.0
Neither of which are what matter right? Just want to make sure...
Just looking over my test results and don't see anything precore named...
Ones I haven't mentioned and don't recognize are
HEP BE AB SEE NOTE Result: NON-REACTIVE
Hep B Surface Ab 1.94 >10.0
Neither of which are what matter right? Just want to make sure...
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