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Tonight I officially start TAF - I'll put all my results here
For those that recall, I've been on the clinical trial for TDF vs. TAF. It's a double blinded study which means I do not which drug I was on. I tried asking my doctor today about this and he just smirked a little at me and said "we don't know" but I suspect he does know and opted not to tell me as per agreement/contract. However, this does not change the fact that going forward, I will now be treated with TAF for the remainder of the trial which last 9 months.
Anyway, I decided to mention to him that this new formula was going through FDA approval and he was well aware. I asked him how long would it take for it to be approved and he said about 9 months. He's very confident that it will go through without any hesitation.
Naturally, I asked him a series of questions, such as what happens if my insurance does not approve the new formula or if the FDA approves it before the trial ends or it does not get approved at all. Here were some of the answers I was given:
-If FDA Approves it before the trial ends, I will finish the trial as they want to collect as much data as they can.
-If FDA does no approve, the trial will be extended
-It's possible my insurance may not cover the new formula, especially if it ends up being significantly higher in price than the old formula. If that is the case, they can look at getting me onto the old formula or if it came down to it, switching me to entecavir.
-Price wise, they'd look at getting me a copay card to offset any of the pricing down the line. Asked about this and was told "could be a couple of hundred a month but we'll do our best to make it cheaper".
-I also asked about clinical trials down the line with them, which they said they don't have anything at the moment but I should look into the trials that are being aimed for the cure.
Overall, not only am I concerned about switching to TAF now (in case I have any reactions or symptoms come back) but what concerns me the most is the fact that they are even thinking about switching me from Tenofovir to entecavir. To me, this does not even make any since since Tenofovir works a LOT better.
Now, I did get a result back of my Ultrasound. Unfortunately, I have a cyst on my kidney that seems to be growing but my last blood test seems to be fine with kidney function. I also have a polyp on my gallblader which I have had for years now. More importantly, my liver: No abnormalities, perfectly normal.
On that note, I'll share my results going forward.. including the results from the blood being drawn today prior to TAF (which I should have in 2 weeks). For prior results, please see my old posts.
Please note, I am no doctor, I am a patient.... I know I get many questions via PM as if they are directed towards a doctor, but I can only answer so much based on my experience. Also, I have no way of getting TAF other than through this trial and do not know of any other way. Please feel free to ask anything you'd like. I'll answer my best and will give some feedback of the meds and how they are working for me down the line.
Anyway, I decided to mention to him that this new formula was going through FDA approval and he was well aware. I asked him how long would it take for it to be approved and he said about 9 months. He's very confident that it will go through without any hesitation.
Naturally, I asked him a series of questions, such as what happens if my insurance does not approve the new formula or if the FDA approves it before the trial ends or it does not get approved at all. Here were some of the answers I was given:
-If FDA Approves it before the trial ends, I will finish the trial as they want to collect as much data as they can.
-If FDA does no approve, the trial will be extended
-It's possible my insurance may not cover the new formula, especially if it ends up being significantly higher in price than the old formula. If that is the case, they can look at getting me onto the old formula or if it came down to it, switching me to entecavir.
-Price wise, they'd look at getting me a copay card to offset any of the pricing down the line. Asked about this and was told "could be a couple of hundred a month but we'll do our best to make it cheaper".
-I also asked about clinical trials down the line with them, which they said they don't have anything at the moment but I should look into the trials that are being aimed for the cure.
Overall, not only am I concerned about switching to TAF now (in case I have any reactions or symptoms come back) but what concerns me the most is the fact that they are even thinking about switching me from Tenofovir to entecavir. To me, this does not even make any since since Tenofovir works a LOT better.
Now, I did get a result back of my Ultrasound. Unfortunately, I have a cyst on my kidney that seems to be growing but my last blood test seems to be fine with kidney function. I also have a polyp on my gallblader which I have had for years now. More importantly, my liver: No abnormalities, perfectly normal.
On that note, I'll share my results going forward.. including the results from the blood being drawn today prior to TAF (which I should have in 2 weeks). For prior results, please see my old posts.
Please note, I am no doctor, I am a patient.... I know I get many questions via PM as if they are directed towards a doctor, but I can only answer so much based on my experience. Also, I have no way of getting TAF other than through this trial and do not know of any other way. Please feel free to ask anything you'd like. I'll answer my best and will give some feedback of the meds and how they are working for me down the line.
Hi All,
Just some updated numbers from the trial. FYI, I was told I may be the last person left on this trial so this time next year, it will be ended. I discussed this with my doctor and he mentioned not to worry about it too much for me, we'll do what we must to either get me on medications to continue them but it's likely a new trial will come out that I would qualify for. At the moment, I do not qualify for any trial.
With that said, in between the last tests I had and this one, I have had some major dental work done as well as a major surgery which required a one night stay in the hospital. My numbers were good before the surgery and my numbers are STILL good after the surgery. They ran additional tests as well to be sure nothing happened after surgery and so far, I am safe. So I'm having no major issues. Here is what I can share:
HBV DNA IU/mL: No HBV DNA Detected (Notice a different result this time? Hmmm)
Total Bili: 0.8 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.7 mg/dL
AST (SGOT) - 25
ALT (SGPT) - 37
Creatinine - 1.16 mg/dL
Uric Acid - 7.4 mg/dL
Calcium - 9.9 mg/dL
Phosphorus - 3.3 mg/dL
Cholesterol: 237 mg/dL (While within range, still on the high side of normal, my LDL is definitely high on here)
pH - 6.0
Fibrosis Score: 0.28 (F0-F1 -No or minimal Fibrosis)
CK - 254 U/L (This is really high again)
AFP: Not Measured This Lab
Osteocal: 22.20 1 ng/mL
Collagen T1 Crosslaps: 0.84 ng/mL (This still shows as high but better than last one)
Parathyroid Hormone - 39.5 pg/mL
HBsAgII: Positive -- (Anyone know what it is II now?)
HBe Ab: Not Measured This Lab
HBe Ag: Not Measured This Lab
HBSAG in Quantitative - Not Measured This Lab
Vitamin D, 25-Hydroxy - Not Measured This Lab
Overall, not bad for someone that just had a bunch of other medical stuff going on. I was actually expecting some stuff to be worse but seems like it's just stayed close to the same and nothing alarming. I'll definitely be asking for Vitamin D and HBSAG quantative tests next year again before I am off the trial. One day, I hope there is a cure. I'm ready for my miracle! :)
Just some updated numbers from the trial. FYI, I was told I may be the last person left on this trial so this time next year, it will be ended. I discussed this with my doctor and he mentioned not to worry about it too much for me, we'll do what we must to either get me on medications to continue them but it's likely a new trial will come out that I would qualify for. At the moment, I do not qualify for any trial.
With that said, in between the last tests I had and this one, I have had some major dental work done as well as a major surgery which required a one night stay in the hospital. My numbers were good before the surgery and my numbers are STILL good after the surgery. They ran additional tests as well to be sure nothing happened after surgery and so far, I am safe. So I'm having no major issues. Here is what I can share:
HBV DNA IU/mL: No HBV DNA Detected (Notice a different result this time? Hmmm)
Total Bili: 0.8 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.7 mg/dL
AST (SGOT) - 25
ALT (SGPT) - 37
Creatinine - 1.16 mg/dL
Uric Acid - 7.4 mg/dL
Calcium - 9.9 mg/dL
Phosphorus - 3.3 mg/dL
Cholesterol: 237 mg/dL (While within range, still on the high side of normal, my LDL is definitely high on here)
pH - 6.0
Fibrosis Score: 0.28 (F0-F1 -No or minimal Fibrosis)
CK - 254 U/L (This is really high again)
AFP: Not Measured This Lab
Osteocal: 22.20 1 ng/mL
Collagen T1 Crosslaps: 0.84 ng/mL (This still shows as high but better than last one)
Parathyroid Hormone - 39.5 pg/mL
HBsAgII: Positive -- (Anyone know what it is II now?)
HBe Ab: Not Measured This Lab
HBe Ag: Not Measured This Lab
HBSAG in Quantitative - Not Measured This Lab
Vitamin D, 25-Hydroxy - Not Measured This Lab
Overall, not bad for someone that just had a bunch of other medical stuff going on. I was actually expecting some stuff to be worse but seems like it's just stayed close to the same and nothing alarming. I'll definitely be asking for Vitamin D and HBSAG quantative tests next year again before I am off the trial. One day, I hope there is a cure. I'm ready for my miracle! :)
I wanted to share latest lab tests again. Numbers have improved for some things, fairly good too:
HBV DNA IU/mL: < 20 IU/mL HBV DNA Detected
Total Bili: 0.9 mg/dL
Dir Bili : 0.2 mg/dL
Ind Bili : 0.7 mg/dL
AST (SGOT) - 19 (down 7 pts)
ALT (SGPT) - 28 (down 6 pts)
Creatinine - 1.23 mg/dL (back below the upper limit and within range)
Uric Acid - 8.0 mg/dL (down 1.5pts, the same 1.5 it went up last time)
Calcium - 10.3 mg/dL
Phosphorus - 3.9 mg/dL (up 1 point)
Cholesterol: 207 mg/dL (While within range, still on the high side of normal)
pH - 5.5
CK - 84 U/L (down 160 pts and back in range)
AFP: 1.7 ng/mL
Osteocal: 29.11 ng/mL
Crosslaps: 1.26 ng/mL (This concerns me because it's telling me I have Osteoporosis? And this may explain why I'm feeling weaker later)
Parathyroid Hormone - 23.9 pg/mL
HBsAg: Positive
HBe Ab: Positive
HBe Ag: Negative
Fibrosis Score: Not measured this lab
Fibrosis Stage: Not measured this lab
Additionally, I had the following 2 measured 2 weeks prior to these tests:
HBSAG in Quantitative - 1318.00 IU/mL
Vitamin D, 25-Hydroxy - 133 ng/mL
I do want to add my Ultrasound Findings. If you recall, 6 montths ago, theey discovered what may have been a lesion and fatty liver. The lesion was just a fatty lesion but still concerning. This Ultrasound: "No significant parenchymal abnormalities. Liver Size 13.1cm" this means everything is back to normal. Not even fatty liver!!
Unfortunately, my gallbladder still has problems: Cholelithiasis. Several small polyps measuring 3-5mm in size. Does not say how many this time.
Kidney still has a stable 16 x 19 x 20 mm cyst with mid to inferior right renal cortex
All things considered, especially since I was extremely ill from Feb-March, I'm doing better on my numbers here and thankfully better than I was expecting. I am happy to see the liver has shown drastic improvements overall here. Not sure what to do with gallbladder and kidney though. That is a little bit more tricky. Anyway, just wanted to share. Thanks!
HBV DNA IU/mL: < 20 IU/mL HBV DNA Detected
Total Bili: 0.9 mg/dL
Dir Bili : 0.2 mg/dL
Ind Bili : 0.7 mg/dL
AST (SGOT) - 19 (down 7 pts)
ALT (SGPT) - 28 (down 6 pts)
Creatinine - 1.23 mg/dL (back below the upper limit and within range)
Uric Acid - 8.0 mg/dL (down 1.5pts, the same 1.5 it went up last time)
Calcium - 10.3 mg/dL
Phosphorus - 3.9 mg/dL (up 1 point)
Cholesterol: 207 mg/dL (While within range, still on the high side of normal)
pH - 5.5
CK - 84 U/L (down 160 pts and back in range)
AFP: 1.7 ng/mL
Osteocal: 29.11 ng/mL
Crosslaps: 1.26 ng/mL (This concerns me because it's telling me I have Osteoporosis? And this may explain why I'm feeling weaker later)
Parathyroid Hormone - 23.9 pg/mL
HBsAg: Positive
HBe Ab: Positive
HBe Ag: Negative
Fibrosis Score: Not measured this lab
Fibrosis Stage: Not measured this lab
Additionally, I had the following 2 measured 2 weeks prior to these tests:
HBSAG in Quantitative - 1318.00 IU/mL
Vitamin D, 25-Hydroxy - 133 ng/mL
I do want to add my Ultrasound Findings. If you recall, 6 montths ago, theey discovered what may have been a lesion and fatty liver. The lesion was just a fatty lesion but still concerning. This Ultrasound: "No significant parenchymal abnormalities. Liver Size 13.1cm" this means everything is back to normal. Not even fatty liver!!
Unfortunately, my gallbladder still has problems: Cholelithiasis. Several small polyps measuring 3-5mm in size. Does not say how many this time.
Kidney still has a stable 16 x 19 x 20 mm cyst with mid to inferior right renal cortex
All things considered, especially since I was extremely ill from Feb-March, I'm doing better on my numbers here and thankfully better than I was expecting. I am happy to see the liver has shown drastic improvements overall here. Not sure what to do with gallbladder and kidney though. That is a little bit more tricky. Anyway, just wanted to share. Thanks!
I am worried about your lipid profile.you should rather b concerned more about ur diet and obesity than hbv. U seem a potential candidate for cardiovascular accident. Anyways good luck
1 Comments
Thanks, I appreciate that. I agree and since this test, I've been doing lots of good diet and lots of exercise and still nowhere closer to where I want to be. I'm down 15-20lbs, around there, within a month and a half... I still have about 40lbs to go so I'll keep working on it. Unfortunately it's not something that can change over night, it does take time.
Just an update on my numbers here:
HBV DNA IU/mL: < 20 IU/mL HBV DNA Detected
Total Bili: 0.7 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.6 mg/dL
AST (SGOT) - 26 (up 3 pts)
ALT (SGPT) - 34 (up 4 pts)
Creatinine - 1.35 mg/dL (this went up and is too high now)
Uric Acid - 9.5 mg/dL (this went up by about 1.5 pts and is also too high now)
Calcium - 10.0 mg/dL
Phosphorus - 2.9 mg/dL (down .4)
pH - 5.5
CK - 244 U/L (up almost 100pts and now way too high)
Parathyroid Hormone - 23.9 pg/mL
HBsAg: Positive
Fibrosis Score: 0.35
Fibrosis Stage: F1-F2 Moderate Fibrosis
Everything else measured was within range. The big concern was with my Cholesterol because my LDL was way too high at 192 mg/dL and my total Cholesterol was 254 mg/dL. Defintiely glad I've gotten on some diet changes and exercises recently.
Additionally, my liver over the past year has gone from pretty much completely normal to a fatty liver to now having a mass on the right lobe of the liver. The mass was measured at 1.4 x 1.3 x 1.4cm and when discovered on the ultrasound, the doctor called me the same day and wanted me to get a MRI. It said: Hyperechoic consistent with hepatic steatosis. There is a new echogenic mass in the right lobe of the liver measuring 1.4 x 1.3 1.4cm" He comforted me a bit saying that this is fairly small and that I should not be too concerned about it, but naturally I've had some worry. I have a MRI scheduled coming up. The ultrasound also showed I had a gallstone (never had one before) and a 3rd polyp on my gallbladder now.
I did ask the doctor about any new clinical trials that may be more towards a cure, especially since I have what is essentially 2 years left on this one at most. He mentioned 2 of them, one from Janssen (Which looks like it was Arrowhead's therapy at some point) and one from Assembly. Here are the two:
This looks like the ARO-HBV now with Janssen. He said he has heard and seen results on this and it looks very promising
http://www.natap.org/2019/HBV/090519_02.htm
He then mentioned Assembly as well, but didn't share details:
https://www.assemblybio.com/programs/hbv/
He wasn't sure if I'd qualify for either just yet but asked I keep an eye on them. Anyway, I'll leave this post at this for now. I'm doing a few things that will definitely benefit me over the course of the next year, stuff I should have focused on the past few years. Better late than never thought! I'll keep you all posted on any findings or progress as it comes along!
HBV DNA IU/mL: < 20 IU/mL HBV DNA Detected
Total Bili: 0.7 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.6 mg/dL
AST (SGOT) - 26 (up 3 pts)
ALT (SGPT) - 34 (up 4 pts)
Creatinine - 1.35 mg/dL (this went up and is too high now)
Uric Acid - 9.5 mg/dL (this went up by about 1.5 pts and is also too high now)
Calcium - 10.0 mg/dL
Phosphorus - 2.9 mg/dL (down .4)
pH - 5.5
CK - 244 U/L (up almost 100pts and now way too high)
Parathyroid Hormone - 23.9 pg/mL
HBsAg: Positive
Fibrosis Score: 0.35
Fibrosis Stage: F1-F2 Moderate Fibrosis
Everything else measured was within range. The big concern was with my Cholesterol because my LDL was way too high at 192 mg/dL and my total Cholesterol was 254 mg/dL. Defintiely glad I've gotten on some diet changes and exercises recently.
Additionally, my liver over the past year has gone from pretty much completely normal to a fatty liver to now having a mass on the right lobe of the liver. The mass was measured at 1.4 x 1.3 x 1.4cm and when discovered on the ultrasound, the doctor called me the same day and wanted me to get a MRI. It said: Hyperechoic consistent with hepatic steatosis. There is a new echogenic mass in the right lobe of the liver measuring 1.4 x 1.3 1.4cm" He comforted me a bit saying that this is fairly small and that I should not be too concerned about it, but naturally I've had some worry. I have a MRI scheduled coming up. The ultrasound also showed I had a gallstone (never had one before) and a 3rd polyp on my gallbladder now.
I did ask the doctor about any new clinical trials that may be more towards a cure, especially since I have what is essentially 2 years left on this one at most. He mentioned 2 of them, one from Janssen (Which looks like it was Arrowhead's therapy at some point) and one from Assembly. Here are the two:
This looks like the ARO-HBV now with Janssen. He said he has heard and seen results on this and it looks very promising
http://www.natap.org/2019/HBV/090519_02.htm
He then mentioned Assembly as well, but didn't share details:
https://www.assemblybio.com/programs/hbv/
He wasn't sure if I'd qualify for either just yet but asked I keep an eye on them. Anyway, I'll leave this post at this for now. I'm doing a few things that will definitely benefit me over the course of the next year, stuff I should have focused on the past few years. Better late than never thought! I'll keep you all posted on any findings or progress as it comes along!
Yup, this is still going on for me and I'm happy about it! I think I have 2 more years left. My doctor has been hinting at some of the newer trials in Phase II that are targeting a cure. I may strongly consider if it goes to Phase III or right after this trial is done. Anyway, my results have gotten me down a bit. While I did lose 12lbs since my last visit due to better diet and exercise (go me), 7lbs came right back in 2 weeks. I just don't know how this keeps happening so quick. I want to keep going down, not up. Additionally, my Ultrasound Lab mentions Fatty Liver or Hepatocellur Disease and that just gets me all messed up in the head right now. Increased cyst on my kidney, increased liver size and smaller polyps on my gallbladder (which seem to actually be shrinking).
Regardless of all that, here are my lab result numbers:
HBV DNA IU/mL: HBV DNA < 20 IU/mL Detected (I'd feel comfortable if it said Not Detected again.. still does not say that)
Total Bili: 0.6 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.5 mg/dL
AST (SGOT) - 23 (up 2 pts)
ALT (SGPT) - 30 (down 1 pts)
Creatinine - 1.08 mg/dL (down .02)
Uric Acid - 7.9 mg/dL (down .5 and back within normal range)
Calcium - 10.0 mg/dL
Phosphorus - 3.3 mg/dL (up .9)
pH - 5.5 (down ..5)
CK - 157 U/L (up 30)
Parathyroid Hormone - (Not calculated this test)
HBsAg: Positive (The labs say they are supposedly measuring quantitative but I'm only getting this result)
Fibrosis Score: (Not calculated this test)
Fibrosis Stage: Not calculated this test
Some of the things that concerned me last lab, and results this lab:
Cholesterol was a little high at 233 mg/dL (down 2pts but not eno0ugh, my max should be 280)
My C&GCrtClr was 126.7 mL/min (down a few pts, still high as my max should be 125.0)
HAPTOGLOBIN (HPT) (Not Measured this lab)
Direct LDL (Not Measured this lab)
Anyway, wanted to share. I'm praying for a cure for us all sooner rather than later (either naturally or through medicine)! God Bless all!
Regardless of all that, here are my lab result numbers:
HBV DNA IU/mL: HBV DNA < 20 IU/mL Detected (I'd feel comfortable if it said Not Detected again.. still does not say that)
Total Bili: 0.6 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.5 mg/dL
AST (SGOT) - 23 (up 2 pts)
ALT (SGPT) - 30 (down 1 pts)
Creatinine - 1.08 mg/dL (down .02)
Uric Acid - 7.9 mg/dL (down .5 and back within normal range)
Calcium - 10.0 mg/dL
Phosphorus - 3.3 mg/dL (up .9)
pH - 5.5 (down ..5)
CK - 157 U/L (up 30)
Parathyroid Hormone - (Not calculated this test)
HBsAg: Positive (The labs say they are supposedly measuring quantitative but I'm only getting this result)
Fibrosis Score: (Not calculated this test)
Fibrosis Stage: Not calculated this test
Some of the things that concerned me last lab, and results this lab:
Cholesterol was a little high at 233 mg/dL (down 2pts but not eno0ugh, my max should be 280)
My C&GCrtClr was 126.7 mL/min (down a few pts, still high as my max should be 125.0)
HAPTOGLOBIN (HPT) (Not Measured this lab)
Direct LDL (Not Measured this lab)
Anyway, wanted to share. I'm praying for a cure for us all sooner rather than later (either naturally or through medicine)! God Bless all!
5 Comments
Is it taf u taking same as vemlidy. And how old are you, am 32yrs and stage 2 fibrosis due to hepb positive . Doctor told me to use vemlidy. Just heard the result last saturday and have been sad and crying
Hi @Loppie888 TAF is the same as Vemlidy, that is correct. I believe they named it such a year or two ago. Prior to that, it was only known as TAF. In my opinion, my body is tolerating TAF much better than TDF (I cannot confirm if I was ever on TDF but I suspect I was). I'm sorry you feel that way. This illness can bring on a lot of depression, as I've dealt with it from time to time. Hang in there, it does get better. I am now 42 years old. I first found out about mine when I was 36 years old and started treatment when I was 37 years old about 10 months after I found out. I think stage 2 Fibrosis was my worst too, but that was later on due to a very poor diet. I'm usually in 0-1 with minimal to no Fibrosis. Hope my answers help you!
@luckyman316 I was reading the Vemlidy or TAF an increase Cholesterol or some parameters related to that. Do you think your increase is due to the medication?
@luckyman316 what was your fibrosis score before and now, and how was your diet now ? what do you eat to reverse ?
@hellolove228 my Fibrosis score was at:
Fibr. Score - 0.16
Fibr. Stage - F0, No or minimal Fibrosis
This was before I started meds back in May 2014.
My last score was from Dec 2018:
Fibrosis Score: 0.28
Fibrosis Stage: F0-F1, No or Minimal Fibrosis
So it went up slightly but not a lot, and I'll contribute that poor diet around that time frame with some extra fatty foods, but still not bad.
I don't take or eat anything in particular because there is nothing to reverse there. I just try to make sure I get a bit of everything for myself. I have cut back on fatty foods and down 15lbs since that time last year because of it. I think my Fibrosis score will be measured next visit.
Fibr. Score - 0.16
Fibr. Stage - F0, No or minimal Fibrosis
This was before I started meds back in May 2014.
My last score was from Dec 2018:
Fibrosis Score: 0.28
Fibrosis Stage: F0-F1, No or Minimal Fibrosis
So it went up slightly but not a lot, and I'll contribute that poor diet around that time frame with some extra fatty foods, but still not bad.
I don't take or eat anything in particular because there is nothing to reverse there. I just try to make sure I get a bit of everything for myself. I have cut back on fatty foods and down 15lbs since that time last year because of it. I think my Fibrosis score will be measured next visit.
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