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Treatment ? Clinical Trail?
Hi, i have very little knowledge of Hep B and apologize ahead of the time for stupid questions.
Background: found out i'm hep b carrier at age 16, when my brother was tested positive, the whole family went for testing, and i was the unlucky one, my mom for some reason was tested negative, but my dr. believe it was from my mom, that my mom's result was false negative. She never re-test. I'm female and 35 years old now. My previous dr. (2003-2012) always says that since my liver function is normal, no medication is recommended even though my viral count was high. then i moved an have a new dr since 2012, he however believes that i should take tenofovir because my viral count is high, but he said it's my choice and i could take time to think about it. so when i finally decided to take this medicine, he said there's now a new trial on going, and it might cure hep b, and i'm a perfect candidate for it. So it's the Gilead's trial of " Safety and Efficacy of GS-4774 in Combination With Tenofovir Disoproxil Fumarate (TDF) for the Treatment of Subjects With Chronic Hepatitis B and Who Are Currently Not on Treatment"
I'm scare of the side effects, and read that there was death on a previous hep C trail.
I have no medical knowledge and wanted to know if there's any danger in clinical trial. what are the pros and cons? If i don't do it, and this trial is successful, how soon will the medication be available?
my test result as of july 2014,
HEPATITIS BS AG - Reactive
HEPATITIS Bs Ab QUAL - Non-reactive
ALT-23
AST-22
ALPHA FETOPROTEIN - 2.9
FERRITIN - 10
HEPATITIS BE AB - Negative
HBV DNA QUANT. PCR - 122,189,878 iu/ml
HEPATITIS BE AG - Positive
i read many posts by the community, and it seems like i need to get HBsAg quantitative number, which i didn't see from my result, just email my dr to get that.
thank you all.
Background: found out i'm hep b carrier at age 16, when my brother was tested positive, the whole family went for testing, and i was the unlucky one, my mom for some reason was tested negative, but my dr. believe it was from my mom, that my mom's result was false negative. She never re-test. I'm female and 35 years old now. My previous dr. (2003-2012) always says that since my liver function is normal, no medication is recommended even though my viral count was high. then i moved an have a new dr since 2012, he however believes that i should take tenofovir because my viral count is high, but he said it's my choice and i could take time to think about it. so when i finally decided to take this medicine, he said there's now a new trial on going, and it might cure hep b, and i'm a perfect candidate for it. So it's the Gilead's trial of " Safety and Efficacy of GS-4774 in Combination With Tenofovir Disoproxil Fumarate (TDF) for the Treatment of Subjects With Chronic Hepatitis B and Who Are Currently Not on Treatment"
I'm scare of the side effects, and read that there was death on a previous hep C trail.
I have no medical knowledge and wanted to know if there's any danger in clinical trial. what are the pros and cons? If i don't do it, and this trial is successful, how soon will the medication be available?
my test result as of july 2014,
HEPATITIS BS AG - Reactive
HEPATITIS Bs Ab QUAL - Non-reactive
ALT-23
AST-22
ALPHA FETOPROTEIN - 2.9
FERRITIN - 10
HEPATITIS BE AB - Negative
HBV DNA QUANT. PCR - 122,189,878 iu/ml
HEPATITIS BE AG - Positive
i read many posts by the community, and it seems like i need to get HBsAg quantitative number, which i didn't see from my result, just email my dr to get that.
thank you all.
Best Answer
Hi Rach! I buy through e-bay or amazon Solgar Vit D 10.000. I can'drink coffee without milk for sure. I eat everything, except sugar. Since I know for hep b , I put honey instead of sugar, sleep a lot. Since two years I am reading everyday about tenofovir. It is the only potent and effective drug with no resistance, and everyone taking it is feeling fine. No side effects, mostly could occur to people with coinfection with hiv. Just listen your doctor, he is a warrior, he won his battle trying antiviral with interferon, he also put himself on clinical trial. He is a scientist.
to safely stop nucs you need pegintf add on for 48weeks, this way immune system will take care of transition when you stop nucs
another question on TDF, if i start this treatment with TDF and stop after a year or six month, will it negatively impact my current liver condition?
I think i read it somewhere that once you start you have to continue for many years, if you stop prematurely, the impact of this to your liver is worse than if you've never had any treatment. Is that correct?
I'm thinking if i start this clinical trial, i will be on TDF for many years to come, with no choice but to take it. Whereas now, i could still wait a number of years since i'm still in the immune tolerance phase, and my fibroscan result recently was 4.6, very good score.
I think i read it somewhere that once you start you have to continue for many years, if you stop prematurely, the impact of this to your liver is worse than if you've never had any treatment. Is that correct?
I'm thinking if i start this clinical trial, i will be on TDF for many years to come, with no choice but to take it. Whereas now, i could still wait a number of years since i'm still in the immune tolerance phase, and my fibroscan result recently was 4.6, very good score.
thanks for explaining that Mer971. never thought water would help with low calcium.
my calcium is at 9.4, normal range is 8.5-10. so I'm good :)
my calcium is at 9.4, normal range is 8.5-10. so I'm good :)
The case of normal vit d levels milk must be avoided be cauze your body will work normally and will absorb calcium from all foods and you may easily end up with too much
on the contrary when vit d deficient the body cannot absorb calcium and often take it from the bones...so in this status of malnutrition (i mean you eat a lot of food empty of micronutrients) common to most western population drinking milk makes no calcium excess
on the contrary when vit d deficient the body cannot absorb calcium and often take it from the bones...so in this status of malnutrition (i mean you eat a lot of food empty of micronutrients) common to most western population drinking milk makes no calcium excess
What article, there are but the thing is so obvious
full of useless calcium, full of rubbish fed the animal (the animals must eat grass in the wild, nature never built them to eat cereals of rubbish in the food they have today).the milk is so full of antibiotics, steroids and drugs in genereral that many countries among the less corrupt report what they found in it, even italy which is very corrupt made public what is found in milk
and end of story milk has cancer causing agents, breast jn particular, and humans and mammals in beneral were never meant to eat milk all life.all mammals just eat as born and then stop
full of useless calcium, full of rubbish fed the animal (the animals must eat grass in the wild, nature never built them to eat cereals of rubbish in the food they have today).the milk is so full of antibiotics, steroids and drugs in genereral that many countries among the less corrupt report what they found in it, even italy which is very corrupt made public what is found in milk
and end of story milk has cancer causing agents, breast jn particular, and humans and mammals in beneral were never meant to eat milk all life.all mammals just eat as born and then stop
Rach what steff is saying is that if in your test calcium is under 25ng/ml is better to drink every day 2.5 ml of water. So if you don't know your levels of calcium better do it
honestly had no idea about off all dairies. why is that? is there an article i should read?
Also nuts? doctors never mention about this. what's the rational behind it?
what about organic dairy?
so 2.5L of water with 25mg of calcium? i don't think it's possible to get calcium supplement in such a small dose 25mg? i normally see 500mg in supplements here.
I'm sure i'm missing something here ;) doesn't really make sense.
Also nuts? doctors never mention about this. what's the rational behind it?
what about organic dairy?
so 2.5L of water with 25mg of calcium? i don't think it's possible to get calcium supplement in such a small dose 25mg? i normally see 500mg in supplements here.
I'm sure i'm missing something here ;) doesn't really make sense.
re alcohol, my dr also told me one glass a day is perfectly fine. hmm... definitely do learn a ton on this board. Thanks again.
Yes mandatory off all dairies even those in processed foods and restriction of nuts.water 2.5l of water with calcium less than 10mg/l.this will make vitd25oh very safe at 150ng/ml and is also healthy in general, dairies are contaminated from the rubbish food animals are fed and all the drugs given to them
rach, taking 10,000iu daily is pretty essential for us. I did this last year and feel MUCH MUCH better. At a point, I even upped it to 20,000iu to get my levels above 100. The lab cutoff is 100 but if you read what Stef posts, we could go as high as 150 and be safe.
Coffee is fine.. it's been actually said to be beneficial for your liver. Of course, there are downsides to it too. I used to drink 3/4 cups a day and ended up with bad teeth because of it lol
You need to stay away from alcohol as much as you can. My doctor gave me the whole "2-3 beers a week or 1-2 glasses of wine are fine" but I know better. It doesn't hurt anyone to tell people "I can't drink right now, doctor's orders". Also, it's been said to stay away from dairy...
Coffee is fine.. it's been actually said to be beneficial for your liver. Of course, there are downsides to it too. I used to drink 3/4 cups a day and ended up with bad teeth because of it lol
You need to stay away from alcohol as much as you can. My doctor gave me the whole "2-3 beers a week or 1-2 glasses of wine are fine" but I know better. It doesn't hurt anyone to tell people "I can't drink right now, doctor's orders". Also, it's been said to stay away from dairy...
oh.. i didn't realized it's 10,000. i was only taking 2,000 iu before.
am i way off here?
am i way off here?
it's funny you mentioned coffee. when i first see my dr. i asked him if i should keep my coffee to one cup, he said coffee is good, 2 or 3 cups are fine. drink it away. LOL. i do use creme in my coffee. I only have alcohol on occasion, or events i go to, so there's no issue there.
On vit d, you take two gels a day for 20,000 iu, right?
On vit d, you take two gels a day for 20,000 iu, right?
And on that note, any diet/food is particular helpful? thinking about Vit D, i'm not a milk drinker, never was, should i really start drinking milk for the sake of my liver? any other tips is appreciated.
I understand there's a lot of great threads here, feel free to link it here for me to read if it's already discussed elsewhere.
I understand there's a lot of great threads here, feel free to link it here for me to read if it's already discussed elsewhere.
Sent you a mdm Mer971.
By the way, i'm starting to religiously taking Vit D3, what brand and dosage is good? would you guys suggest any?
Thanks.
By the way, i'm starting to religiously taking Vit D3, what brand and dosage is good? would you guys suggest any?
Thanks.
Well, they are not providing the vaccines after the trial. I read Gilead is obnoxious with putting a high price tag on their medicines. Ugh...
Hi rach. I live in NY as well. Could you tell me who is your dr?, or send me sms inbox. Meanwhile,they don't do Hbsag test here, if you have chance to go outside usa do it. If you choose to go on trial, I will be curious if they test people for hbsag before going in, or it is a game of healthinsurance, or what's the problem? such a cheap test
Yes, regarding the baseline testing.
I will need to do a screening blood test and baseline testing first and then the clinical trial dr. will let me know if my condition seems okay for the trial, based on what they know of course.
I will need to do a screening blood test and baseline testing first and then the clinical trial dr. will let me know if my condition seems okay for the trial, based on what they know of course.
Stef,
my dr. told me this for HBsAg
Component Value Range & Units Status
HBV DNA QUANT. PCR 72291944 (A) Not Detected IU/ml Final
what does it mean?
my dr. told me this for HBsAg
Component Value Range & Units Status
HBV DNA QUANT. PCR 72291944 (A) Not Detected IU/ml Final
what does it mean?
lactic acidosis has been seen rarely only on decompensated cirrhosis, so it is best they check lactate levels at start but not an issue
while for kidneys and bone density it is known the problem is already present baseline, you can be relatively sure by checking:
creatinine clearance by 24hr urine collection and urine/blood phosphate levels
moc, not sure if same in english, choose the new one with no radiation exposure to see how bones are
while for kidneys and bone density it is known the problem is already present baseline, you can be relatively sure by checking:
creatinine clearance by 24hr urine collection and urine/blood phosphate levels
moc, not sure if same in english, choose the new one with no radiation exposure to see how bones are
Thank you Stephen,
i think i read about the lactic acidosis with TDF that scared me. There were also kidney issue that you mentioned and some bone density issue too.
Again, it's hard to tell because the effects are different for people with different health condition.
But thanks again for your input.
i think i read about the lactic acidosis with TDF that scared me. There were also kidney issue that you mentioned and some bone density issue too.
Again, it's hard to tell because the effects are different for people with different health condition.
But thanks again for your input.
thank you Stef.
i was asking my dr for the quant and haven't heard. I only see the qualitative, which is 'REACTIVE', i wonder if they didn't test for the quantitative. It's NYC, pretty famous hepatitis specialist, I would image he wanted to see the quantitative part of my HbSAg.
here's the genotype result done two years ago.
HBV SURFACE ANTIGEN MUTATIONS Not Detected
HEPATITIS B GENOTYPE Type B
HBV RT POLYMERASE MUTATIONS Not Detected
As far as side effects, it's hard to tell if it's very safe. they all disclose the most common side effects, and some uncommon (more serious) side effects. Below is what was provided.
GS-4774 was well tolerated with no serious side effects. The most common side effects were injection site reactions. These reactions included pain, soreness, redness, and swelling on the part of the body you received the injection. It is likely that you will have some swelling at the site of the injections; you may also have soreness and thickening of the skin. If these reactions occur, they may be treated with aspirin or aspirin like drugs and they may completely go away but it is possible that skin thickening might not completely go away. The treatment with GS-4774 may result in increased liver inflammation that can be severe with resulting jaundice (yellowing of the eyes and skin) and will be measured with a blood test. If this occurs, you may be required to discontinue the study and be given medication to treat the inflammation.
Tenofovir DF (TDF, Viread®) SIDE EFFECTS
Common potential side effects identified in HIV patients who received at least one dose of Tenofovir DF 300 mg during clinical trials or expanded access program, include:
• gastrointestinal side effects including o diarrhea
o nausea
o vomiting
o flatulence (intestinal gas)
• dizziness
Those side effects were often mild or moderate in severity, and did not lead to
discontinuation of Tenofovir DF.
i was asking my dr for the quant and haven't heard. I only see the qualitative, which is 'REACTIVE', i wonder if they didn't test for the quantitative. It's NYC, pretty famous hepatitis specialist, I would image he wanted to see the quantitative part of my HbSAg.
here's the genotype result done two years ago.
HBV SURFACE ANTIGEN MUTATIONS Not Detected
HEPATITIS B GENOTYPE Type B
HBV RT POLYMERASE MUTATIONS Not Detected
As far as side effects, it's hard to tell if it's very safe. they all disclose the most common side effects, and some uncommon (more serious) side effects. Below is what was provided.
GS-4774 was well tolerated with no serious side effects. The most common side effects were injection site reactions. These reactions included pain, soreness, redness, and swelling on the part of the body you received the injection. It is likely that you will have some swelling at the site of the injections; you may also have soreness and thickening of the skin. If these reactions occur, they may be treated with aspirin or aspirin like drugs and they may completely go away but it is possible that skin thickening might not completely go away. The treatment with GS-4774 may result in increased liver inflammation that can be severe with resulting jaundice (yellowing of the eyes and skin) and will be measured with a blood test. If this occurs, you may be required to discontinue the study and be given medication to treat the inflammation.
Tenofovir DF (TDF, Viread®) SIDE EFFECTS
Common potential side effects identified in HIV patients who received at least one dose of Tenofovir DF 300 mg during clinical trials or expanded access program, include:
• gastrointestinal side effects including o diarrhea
o nausea
o vomiting
o flatulence (intestinal gas)
• dizziness
Those side effects were often mild or moderate in severity, and did not lead to
discontinuation of Tenofovir DF.
check your hbsag quant in iu/ml (architect or elecsys machines can do this) and your genotype so we may know if you can easily clear on sequential treatment without making trial with unknown sides effect of new drugs
gs-4774
check if you can be informed about all sides effects and dangers of this or this plus tdf.if this is very safe i would go for the trial
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