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My Latest Results/Update
I'm sure many of you have followed my journey through the clinical trial of TDF vs TAF since 2014. That journey ended at September 2021 as I was actually the very last patient to complete the trial (and one of the first few that started it).
Once that was completed, I had to go through my insurance to receive TAF - Vemlidy for 1 full year. The cost wasn't bad since insurance covered it. Unfortunately, my insurance no longer covered the medication starting July 1st, 2022. So my cost went from being $60 USD to $1683 USD a month. Needless to say, that was unacceptable and very unaffordable as well (to some, this is a monthly rent/mortgage for living in the United States).
I finally got in with my doctor and he seemed surprised when I told him this, even though I sent him an email about it over a month ago to see if he could fight my insurance. The good news, I was able to convince insurance to get me what remained for "One Last Time" before July 1st, 2022 so I was good until end of September. The bad news? I am now being forced to go back to TDF - Viread because that is covered by insurance.
My doctor doesn't know why they dropped it but only gave me the one option above. There are no more clinical trials for him to recruit me on. They tried getting me on one and did try to recruit me hard on it but I declined. They did mentioned there may be a new clinical trial in 2-3 months time that I would likely be a candidate for, and may be geared towards a cure, but didn't have any info on it at the time nor was it open yet.
Anyway, that being said, I'll be back there in September. Before I give you my weight, let's just say my weight puts me in an Obese stage and I am unable to lose weight on a diet alone myself but I also half two failed neck surgeries in my neck, thus making it impossible to work out to lose weight as well. My blood pressure was very high at a 150 over 105 and this was very concerning to them. It goes down when I lose weight yes, but I suspect it's higher because of the failed surgeries (my surgeons told me this could happen). On top of this, my heart rate was at a 104 and going fast, but I also walked to the facility so that could have been a contributing factor.
Anyway, here are the other results *only posting what I feel is relevant*:
Glucose - 91 mg/dL
Sodium - 140 mmol/L
Calcium - 9.8 mg/dL
Bilirubin, Total - 0.4 mg/dL
Alkaline Phosphatase - 66 IU/L
AST (SGOT) - 23 IU/L
ALT (SGPT) - 36 IU/L
pH - 7.0
HBV IU/mL - HBV DNA not detected (This means the medication is working!!!!!!)
AFP, Serum, Tumor Marker - 1.8 ng/mL
Hep B Surface Ab, Qual - Non Reactive
Hep B Surface Antigen Quant - 4168.00 IU/mL
Phosphorus- 2.9 mg/dL
HBsAg Screen - Positive
My only concerning piece is that My HBsAg Quantitative has gone UP since March 2020. They are now as follows:
In March of 2020 it was at:
1318.00 IU/mL
In September 2021 it is now at:
3599.00 IU/mL
June 2022 it is now at:
4168.00 IU/mL
I can only assume that the weigh gain and poor diet plays a big part in this because in March of 2020 I was 185lbs and June 2022 I am 255lbs. I'd be more concerned on being on a clinical trial with an increasing value like this and honestly would not want to go on it unless they can guarantee a huge knock down of value during a 1-2 year trial. Anyway, I'll share more as I get on here and will post any updates as needed if I make any crazy decisions.
Once that was completed, I had to go through my insurance to receive TAF - Vemlidy for 1 full year. The cost wasn't bad since insurance covered it. Unfortunately, my insurance no longer covered the medication starting July 1st, 2022. So my cost went from being $60 USD to $1683 USD a month. Needless to say, that was unacceptable and very unaffordable as well (to some, this is a monthly rent/mortgage for living in the United States).
I finally got in with my doctor and he seemed surprised when I told him this, even though I sent him an email about it over a month ago to see if he could fight my insurance. The good news, I was able to convince insurance to get me what remained for "One Last Time" before July 1st, 2022 so I was good until end of September. The bad news? I am now being forced to go back to TDF - Viread because that is covered by insurance.
My doctor doesn't know why they dropped it but only gave me the one option above. There are no more clinical trials for him to recruit me on. They tried getting me on one and did try to recruit me hard on it but I declined. They did mentioned there may be a new clinical trial in 2-3 months time that I would likely be a candidate for, and may be geared towards a cure, but didn't have any info on it at the time nor was it open yet.
Anyway, that being said, I'll be back there in September. Before I give you my weight, let's just say my weight puts me in an Obese stage and I am unable to lose weight on a diet alone myself but I also half two failed neck surgeries in my neck, thus making it impossible to work out to lose weight as well. My blood pressure was very high at a 150 over 105 and this was very concerning to them. It goes down when I lose weight yes, but I suspect it's higher because of the failed surgeries (my surgeons told me this could happen). On top of this, my heart rate was at a 104 and going fast, but I also walked to the facility so that could have been a contributing factor.
Anyway, here are the other results *only posting what I feel is relevant*:
Glucose - 91 mg/dL
Sodium - 140 mmol/L
Calcium - 9.8 mg/dL
Bilirubin, Total - 0.4 mg/dL
Alkaline Phosphatase - 66 IU/L
AST (SGOT) - 23 IU/L
ALT (SGPT) - 36 IU/L
pH - 7.0
HBV IU/mL - HBV DNA not detected (This means the medication is working!!!!!!)
AFP, Serum, Tumor Marker - 1.8 ng/mL
Hep B Surface Ab, Qual - Non Reactive
Hep B Surface Antigen Quant - 4168.00 IU/mL
Phosphorus- 2.9 mg/dL
HBsAg Screen - Positive
My only concerning piece is that My HBsAg Quantitative has gone UP since March 2020. They are now as follows:
In March of 2020 it was at:
1318.00 IU/mL
In September 2021 it is now at:
3599.00 IU/mL
June 2022 it is now at:
4168.00 IU/mL
I can only assume that the weigh gain and poor diet plays a big part in this because in March of 2020 I was 185lbs and June 2022 I am 255lbs. I'd be more concerned on being on a clinical trial with an increasing value like this and honestly would not want to go on it unless they can guarantee a huge knock down of value during a 1-2 year trial. Anyway, I'll share more as I get on here and will post any updates as needed if I make any crazy decisions.
hbv like most viruses downregulates vitamin d vdr receptors to keep immune cells less active, the only way to overcome this downregulation is saturation of receptors by very high vitamin d blood levels (like coimbra protocol does for autoimmune diseases)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6192355/
i am going to increase my vitamin d levels again and check if there is any effect on my hbsag levels, my lastest tests were:
june 3rd 2022 630iu/ml
june 27 2022 714iu/ml
while my vitamind25oh
feb 14 2022 56ng/ml
june 3rd 2022 80ng/ml
i usually keep it between 100 and 150ng/ml, main labs updated normal vitamin d levels as 30-150ng/ml here and they should have updated many years ago
i will update on all levels, i am also boosting my immunity by mushrooms
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6192355/
i am going to increase my vitamin d levels again and check if there is any effect on my hbsag levels, my lastest tests were:
june 3rd 2022 630iu/ml
june 27 2022 714iu/ml
while my vitamind25oh
feb 14 2022 56ng/ml
june 3rd 2022 80ng/ml
i usually keep it between 100 and 150ng/ml, main labs updated normal vitamin d levels as 30-150ng/ml here and they should have updated many years ago
i will update on all levels, i am also boosting my immunity by mushrooms
3 Comments
@stef2011
How much vitamin D do you take each day?
How much vitamin D do you take each day?
after peginterferon+tdf in 2014 i lowered my blood levels and dose and managed to keep vitd25oh around 100ng/ml
i think best dose is 10.000iu per day, checking blood levels of vitd25oh and serum calcium is also very important, possible toxicity is for levels over 150ng/ml
i am taking 15.000iu per day from feb 2022 but june results are still low for my purpose so i upped to 20.000iu per day
i avoid dairies in my diet and drink about 2.5-3L of water daily
i think best dose is 10.000iu per day, checking blood levels of vitd25oh and serum calcium is also very important, possible toxicity is for levels over 150ng/ml
i am taking 15.000iu per day from feb 2022 but june results are still low for my purpose so i upped to 20.000iu per day
i avoid dairies in my diet and drink about 2.5-3L of water daily
@stef2011 Thank you. Do you drink coffee? It seems to help.
as regards hbsag increse please compare your vitamin d blood levels and dosage, there is correlation but probably only on very high levels and maybe not for any infection
we already knew about the effect of vit d3 on hbv infection but now we have a study that found how it works:
Vitamin D signaling inhibits HBV activity by directly targeting the HBV core promoter
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8517215/
we already knew about the effect of vit d3 on hbv infection but now we have a study that found how it works:
Vitamin D signaling inhibits HBV activity by directly targeting the HBV core promoter
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8517215/
Hi if you have insurance, you can join the vemility copay card which will reimbursed up to $5000 per year. With my insurance it is a $1500 deductible so I just pay it up front and get reimbursedhttps://www.vemlidyhcp.com/copay-patient-support/?utm_id=iw_sa_10142017109_103082730913&utm_medium=cpc&utm_term=vemlidy+copay+card&gclid=CjwKCAjwiJqWBhBdEiwAtESPaGIuta3OIsG-Ynh0MT-XQAoiEIuqoG7R9rcQuq6kxoVvzU9ZLq1CmxoCzRIQAvD_BwE&gclsrc=aw.ds from vemility up to $5k.
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