Aa
Aa
A
A
A
Close
Avatar universal

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.
54 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Thanks lucky man hope 'll get cured before the 5 years.
Helpful - 1
Avatar universal
My next best result would be going from F1 to F0 or becoming HBsAg Negative :)
Helpful - 1
1 Comments
Hope so ! :)
Avatar universal
So here we go, got my results back pre-TAF. Here is everything you need to know (or at least what they took):

HBV DNA IU/mL: < 29 IU/mL HBV DNA Detected
Total Bili: 0.3mg/dL
Dir Bili : < 0.1 mg/dL
Ind Bili :< 0.3 mg/dL
AST (SGOT) - 24 (down 5 points)
ALT (SGPT) - 40 (up 2 points and still NORMAL)
Creatine - 1.14 mg/dL
Uric Acid - 6.3 mg/dL (down 1.2 pts)
Calcium - 9.8 mg/dL
Phosphorus - 4.5 mg/dL
pH - 5.5
CK - 135 U/L (back down 100pts and now normal)
Parathyroid Hormone - 36.2 pg/mL (Slight jump from last test)
HBsAg: Positive :(
Fibr. Score: 0.28
Fibr. Stage: F1, No or Minimal Fibrosis

Other things to be concerned about:

ALPHA-2-MACROGLOBULIN
296 mg/dL (range is 110.0-276.0 mg/dL so it's slightly elevated)

Apolipoprotein A1
106 mg/dL (range is 110-205 mg/dL so it's slightly low)

Osteocal - 56.61 ng/mL (range is 7.30-38.50) -- This has always been high and is associated with the bones. I'm interested to see how this one goes with TAF and if this stabilizes.

Overall, 2 weeks into TAF, I am feeling ok and no real change has occurred. The only thing I get is maybe a little more tired and I end up sleeping in during the weekend mornings, which I was not doing before. But my energy levels are pretty good at night and during the day.

DEXA scan results not in yet so I'll update when they are.


My cholesterol is all normal which is great to see and is even decreasing to the lower end of normal so my diet has been working.


Helpful - 1
1 Comments
thanks for report, waiting for even  better results after TAF :)
Avatar universal
So I meant to post this in October but here were the last and FINAL results from this Clinical Trial. The trial ended and I am now my medication through my insurance. I started this trial in 2014 and I was actually the LAST person on it, from what I was told. I consider myself lucky to be part of this and hope I have helped many with the effectiveness of this treatment of TAF. When I started, I did not know if it was TAF or TDF but since 2016 I knew 100% it was TAF when they officially extended it and put me on it.

As for my final numbers, I am not happy I was NOT cured in all this time. I strongly considered stopping treatment after 7 years when this trial ended on it but my doctor advised me against it. I still have it in my mind that I should maybe attempt to stop and see what happens. He gave me good reasons though such as some numbers and such not being where it should be for me to attempt to stop and see if I can clear it out.

I *was* however, offered to be on 2 clinical trials the past month. I have yet to decide if I want to take part in either but 1 has officially cured one of my doctor's patients. My reluctantcy is due to time constraints, me want to focus on other areas of my health the next 6-8 months and the fact that the trials Interferon treatment later on in the course (something I really don't want to attempt at a younger age for myself)

Here is my final number:

HBV DNA IU/mL: <20 IU HBA DNA Detected (I hate these wordings when it does not say undetectable)
Total Bili: 0.5 mg/dL (Has stayed fairly consistent)
Dir Bili : 0.1 mg/dL
Ind Bili : 0.4 mg/dL
AST (SGOT) - 29
ALT (SGPT) - 37
Creatinine - 1.13 mg/dL  
Uric Acid - 8.8 mg/dL (Considered High)
Calcium - 10.0 mg/dL
Phosphorus - 2.4 mg/dL
Cholesterol: 243 mg/dL (Down slightly but I've gained a LOT of weight in the past year and a half due to my inability to exercise right from injuries and surgeries, so I need to refocus)
pH - 6.0
Fibrosis Score: 0.26 (F0-F1 Minimal to No Fibrosis)
CK - 259 (Very high)
AFP: Not Measured This Lab
Osteocal: 28.84 ng/mL
Collagen T1 Crosslaps: 0.59 ng/mL
Parathyroid Hormone - 65.3 pg/mL
HBsAgII: Positive
HBe Ab: Not Measured This Lab
HBe Ag: Not Measured This Lab
HBSAG in Quantitative - 3599.00 IU/mL (This has gone up a lot but I was told this is ok and normal.. which I disagree with)
Vitamin D, 25-Hydroxy - Not Measured This Lab

My glucose was also high for the first time ever. I won't post the number but it has never been high in my life. I am not diabetic but if someone were to see the slight elevation they'd possibly put me there as borderline. This absolutely has everything to do with my weigh gain I am sure.

Anyway, this will be my last post here on this topic. I may start another one and reference my trial posts in there, especially if I *do* opt to go on another trial, but in the meantime, thank you all for your kindness and support and advice over the many years!
Helpful - 0
1 Comments
i agree with your choice to focus on other health aspects that are more important now and avoid interferon.it did a lot of good to my hbv situation but i had to use some antaging experimental stuff to repair all the other damage, not to mention the damage to my thyroid, i recovered to normal tsh this year (interferon treatment was in 2014)
Avatar universal
Hi All,

So I wanted to share my latest labs regarding this clinical trial. I have been so blessed to been on this trial for 7 years. This was the last time I am getting any free medication from them, unless something changes of course between now and my last appointment. After this, I'm on my own with insurance (but only get 3-6 months worth each time so I hope it's not costly) but the good news is, I don't have to adhere to rules of the trial either but that really doesn't change for me as those rules are the same rules I applied to rules of life. I  have fatty liver again so this is something I need to work on with an extreme diet. Not easy for sure and I have another major surgery coming up. With that said, my doctor did discuss another trial with me. It sounds like more of a cure trial that is designed to cure this illness in a year or less. Something new in the works which he is a part of now.  Anyway, below is the simple lab I got. Next lab will be more complex and I'll be asking them to measure more that lab as a final lab and will be the last time I am sharing as part of this clinical trial results. I'm considering starting  a new thread after that but have not decided. I did ask them about stopping the medication and he said because I did not have positive antibodies, I could not do so. Anyway, good luck to all still going through this! I've been very strong and it's been quite challenging for sure some days!

HBV DNA IU/mL: No HBV DNA Detected
Total Bili: 0.5 mg/dL
Dir Bili : <0.1 mg/dL
Ind Bili : <0.5 mg/dL
AST (SGOT) - 21
ALT (SGPT) - 30
Creatinine - 1.07 mg/dL  
Uric Acid - 7.2 mg/dL
Calcium - 9.4 mg/dL
Phosphorus - 3.2 mg/dL
Cholesterol: 247 mg/dL (I really need to reduce this and lose a good 30-40lbs in the process)
pH - 65.5
Fibrosis Score: Not measured this lab
CK - 149
AFP: Not Measured This Lab
Osteocal: Not Measured This Lab
Collagen T1 Crosslaps: Not Measured This Lab
Parathyroid Hormone - Not Measured This Lab
HBsAgII: Positive
HBe Ab: Not Measured This Lab
HBe Ag: Negative
HBSAG in Quantitative - Not Measured This Lab
Vitamin D, 25-Hydroxy - Not Measured This Lab
Helpful - 0
1 Comments
Hi luckyman316,

your post is quite interesting and I truly appreciate you and the wealth of information you provided. One advise I can give you is to make the commitment to get your weight under control which could create problem for you down the road even if you're clear of Hep B as NASH is just as bad as chronic hep b. On the next post, it'd be great if we could see some weight improvement.  No need for strenuous workout,  moderate/consistent walking and diet change with limit carb and sugar consumption. You could look into moderate Keto diet with intermittent fasting (limit the FAT consumption). This worked great for me. I'm 5.10'' and was 183-185 pounds and per my doc suggestion, I've lost 15 pounds on this diet and have consistently maintained my weight around 171-173. I'm about your age and I've always eat healthy. I've decreased my carb consumption and that did it for me. You can do it if you put your mind to it, you just have to make it part of your daily routine similar to the daily Vit D and TAF regimen you're on...:) God Bless and let see more good news on your next post.
Avatar universal
Thank you for sharing your experiences. CHB is just unknown to us, except what studies are out there on the internet and our personal medical history.  Your posts are probably the first real person experience I read.  

For me, every 6 months, I feel all could end and life will be so different.  Thank you for sharing
Helpful - 0
Avatar universal
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! :)
Helpful - 0
Avatar universal
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!
Helpful - 0
Avatar universal
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
Helpful - 0
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.
Avatar universal
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!
Helpful - 0
Avatar universal
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!
Helpful - 0
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.
Avatar universal
Good results!
Happy new year to everyone!
Helpful - 0
Avatar universal
Hey everyone, just wanted to offer up my latest test results on this as my trial continues. Looks like I'm done at end of 2020, so 2 years to pray or try and cure myself here before I make a decision whether or not I want to continue meds after 7 years or attempt for a new trial.

Speaking of new trials, I did ask my doctor about the arrowhead/Janssen(JNJ) treatment and if it was in trial. He said he knew of some that were, but was not aware about this one we are talking about on here. I'll have to send him some info since it looks so promising.

Additionally, I've kept off my 5lbs and my blood pressure was normal this time... I really do need to lose about 50lbs though. Maybe I'll work on this in 2019!

Now, the report from the labs:

HBV DNA IU/mL: HBV DNA < 20 IU/mL Detected (I'd feel comfortable if it said Not Detected again)
Total Bili: 0.5 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.4 mg/dL
AST (SGOT) - 20
ALT (SGPT) - 31
Creatinine - 1.10 mg/dL
Uric Acid - 8.4 mg/dL (This is high)
Calcium - 9.9 mg/dL
Phosphorus - 2.4 mg/dL
pH - 6.0
CK - 126 U/L (Down a lot)
Parathyroid Hormone - 40.4 pg/ML
HBsAg: Positive (The labs say they are supposedly measuring quantitative but I'm only getting this result
Fibrosis Score: 0.28
Fibrosis Stage: F1, No or Minimal Fibrosis

These are some typical results. There were some things I need to keep and eye on and I noticed they started to add Vitamin Level checks on this report, but they were all normal (Yay!). For the concerning pieces to me:

Cholesterol was a little high at 235 mg/dL (my max should be 280)
My C&GCrtClr was 129.3 mL/min (my max should be 125.0)
HAPTOGLOBIN (HPT) was 203 mg/dL (my max should be 200)
Direct LDL should be <130 mg/dL and mine was high at 182

Guess it's time to really get on a good diet/exercise plan for the new year indeed!!

Happy 2019 to all and here's to hoping for a cure! Stay positive, friends!  :)
Helpful - 0
1 Comments
Happy New year my friend. :)
From what I understand  part of the trial forbids use of echinacea whilst on the meds  because of its immuno modulation properties..But  I'm allowed to take whatever I want because I'm not on meds. But I took echinacea because I was getting a cold/flu. I fought off the bug. BUT when I check my HBSAB it jumped up significantly it might be coincidental but thought I'd share this.

Also one of the Gastro's told me she thought the antioxidative effect of exercise might have had something to do with my results so losing some weight and getting in good shape won't do any harm buddy...

Good luck :)
Avatar universal
Been a bit since I updated, figured I'd offer some more and what has happened between my last appointment and this one:

I walked in and found out I'm about 15lbs heavier than I was from December. So I was a tad bit over 230lbs (I'm 5'10" btw)

My blood pressure went up as well, it was a 120/100... not good. I was asked to lose 5-10lbs in 2-4 weeks and monitor blood pressure.

Within 2 weeks, I lost 5lbs and my blood pressure was closer to normal.

Now, the report from the labs:

HBV DNA IU/mL: HBV DNA < 20 IU/mL Detected (Not sure how I go undetected to detected, is it the lab?)
Total Bili: 0.5 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.4 mg/dL
AST (SGOT) - 20 (down 6 pts)
ALT (SGPT) - 31 (down 1 pt)
Creatinine - 1.12 mg/dL
Uric Acid - 7.6 mg/dL
Calcium - 9.7 mg/dL
Phosphorus - 3.1 mg/dL
pH - 5.5
CK - 163 U/L (Down a little but in good shape)
Parathyroid Hormone - Not Measured This Lab
HBsAg: Positive
Fibrosis Score: Not Measured This Lab
Fibrosis Stage: Not Measured This Lab

Now for the scary part, the Ultrasound:
Impress: Fatty Liver, Gallbladder polyps, right renal cyst
To give you the basics: Gallblader is 2 polyps, 6mm each. Kidney is lower pole cyst, 13mm. Liver is 13.8cm but no focal abnormality. All of this also showed up on the last test in December.

Anyway, just wanted to share. I'll report back after my next test late this year. Trial continues (Thank goodness) but I need to focus on me and get myself in better shape to eliminate fatty liver and help out my insides.
Helpful - 0
Avatar universal
Since my trial continues to go (I really lucked out on the 5 year extension) then I'll share my results some more from my last visit:

HBV DNA IU/mL: No HBV DNA Detected
Total Bili: 0.6 mg/dL
Dir Bili :  0.1 mg/dL
Ind Bili : 0.5 mg/dL
AST (SGOT) - 26
ALT (SGPT) - 32
Creatinine - 1.20 mg/dL
Uric Acid - 8.2 mg/dL
Calcium - 9.7 mg/dL
Phosphorus - 3.6 mg/dL
pH - 5.5
CK - 162 U/L (Down a little but in good shape)
Parathyroid Hormone - 35.0 pg/mL
HBsAg: Positive
Fibrosis Score: 0.25
Fibrosis Stage:F0-F1, No or minimal Fibrosis

Of note, numbers on mostly everything increased slightly but not alarming and all still fall within range. I had a bad diet in November/December due to holidays so blame that for increased numbers and being a bit overweight (well more than my normal).

Additionally, my cholesterol was on the high side of the cut-off for normal and my blood pressure was VERY high, the worst it was.. I think it was 152/96 which is nowhere near normal for me. What it boils down to, is I need a good diet plan and more exercise. My exercise has been lax in the winter. I want to lose 20-30lbs by my next visit.

Lastly, I was offered the chance to participate in ANOTHER clinical trial by Janssen. My doctor said it aims at a cure within 6 months. I believe it is for:

JNJ56136379: https://clinicaltrials.gov/ct2/show/NCT02662712  

It's being brought into the states and was looking for recruits. However, since it's only in Phase 2 and since I would need to go untreated for 6 months to qualify for it before I even start it, I said "No thanks... let's talk when this current trial is over in 2020 and the new one is in Phase 3. Since I don't qualify by being on this trial, and I don't want to go untreated, it could be too dangerous if the virus comes back on a viral load at an alarming rate, or I build a resistance to the meds by going off of it... and all for something that is only 6 months worth of treatment that is not a even guarantee cure yet.
Helpful - 0
2 Comments
Let me also add really quick.. I had to go back to get blood redrawn for the HBV DNA and Parathyroid Hormone because the labs were not able to get the results due to some tubes apparently not coming over correct to the labs (the doctor verified it was not them, it was sent properly, they think something happened in transit)
152/96 thats definitely high get doing some cardio buddy :)

I personally think you made a good call not doing a phase 2 trial. Phase 3 it'd be a different kettle of fish.


In terms of resistance Tenofivir has very little to nearly NO resistance. But still it wouldn't work out worth the calculated risk for a phase 2 bro
Avatar universal
Good report concerning liver but ur uric acid & calcium are at the higher side. Also ur pH (5.5) is wrongly mentioned I suppose?
Helpful - 0
Avatar universal
Want to share more, got my results back today after a 6 month follow up and here's where I am:

Just an update as to where I am with my numbers:

HBV DNA IU/mL: No HBV DNA Detected
Total Bili: 0.3mg/dL
Dir Bili : < 0.1 mg/dL
Ind Bili :< 0.3 mg/dL
AST (SGOT) - 21
ALT (SGPT) - 30
Creatinine - 1.97 mg/dL
Uric Acid - 7.6 mg/dL
Calcium - 9.4 mg/dL
Phosphorus - 3.0 mg/dL
pH - 5.5
CK - 130 U/L (Down a little but in good shape)
Parathyroid Hormone - Not Measured this lab
HBsAg: Positive
Fibrosis Score: Not Measured this lab
Fibrosis Stage:Not Measured this lab


Everything else is in normal range, including my cholesterol which is right in the middle range. I was shocked about this because my diet was not too great two weeks prior to this test but I'll take it. One piece that I am really happy about is that is says DNA Not Detected which prior to this it said "< 29 IU/mL HBV DNA Detected" which meant I may have had a trace of DNA left in me -- or the lab wasn't as sensitive. Either way, the trial continues and I am happy about this, as I *really* need it at this point in life. I'm hoping at my next one, it says HBsAg: Negative. Fingers crossed!
Helpful - 0
5 Comments
i'm glad for this change in your results, i hope this will be followed soon by what we all expect, to be cured !
The creatinine value must be a typo.
Also, the pH refers to urine,  not serum.
creatinine was indeed a typo... it was 1.07 mg/dL
i noticed all your results was hbv dna detected but under 29 just like the rest of us, but now it says no hbv dna detected. type 0 ? or actually undetected ?
hepbcurepls that is correct... before it said under 29, and now it says undetectable. I'm not sure what to think with that. Is it the sensitivity of the test and the prior test didn't report less than 29, even undetectable? Or did I actually have a tiny bit left for the past 3 years and now after 3 years on meds, I'm finally undetectable? Quite a long time to take to go to undetectable. Not a type-o.
Avatar universal
Just an update as to where I am with my numbers:

HBV DNA IU/mL: < 29 IU/mL HBV DNA Detected
Total Bili: 0.3mg/dL
Dir Bili : < 0.1 mg/dL
Ind Bili :< 0.3 mg/dL
AST (SGOT) - 21 (down 2 point)
ALT (SGPT) - 30 (up 9 points)
Creatinine - 1.16 mg/dL
Uric Acid - 6.7 mg/dL (down 1.6)
Calcium - 9.6 mg/dL
Phosphorus - 4.4 mg/dL
pH - 5.5
CK - 107 U/L (Down a little but in good shape)
Parathyroid Hormone - 45.7 pg/mL
HBsAg: Positive
Fibrosis Score: 0.24
Fibrosis Stage: F0-F1, no or minimal Fibrosis

Just a few thoughts:

-Surprised my numbers are as good as they are. I went 1+ year without drinking and had a few around New Year's but back to not drinking any more, so it helps indeed. My suggestion to anyone is just stay away, and you will slowly normalize

-My diet for the holidays was pretty bad too, ironically I lost a little weight and all my other numbers not related to the liver or Chronic Hep B are normal. Generally, I feel well other than some itching of the skin so I need to get back on my diet routines. Thankfully, I know what works.

-I've been fortunate enough to be told that this will continue on for the 5 extra years we agreed to prior to being approved by the FDA. Told the doctor this was something that concerned me as I was afraid it could end, and he too was concerned since they can no longer get anyone on a TAF trial but I was fortunate to get an extension and they are happy that they will be treating me for the time frame we agreed to.

-Generally, I'm feeling ok and just living a normal life but want to make the right steps into what I need to do next. I'm not looking towards any interferon treatments due to the potential sides, but maybe some additional natural ways that won't interfere with the meds. I'd also like to get my HBSAG measured in Quantitative to see where I am at with it and how close I can be to clearing. The trial does measure it, but they don't share the number as they consider it for internal. I heard they offer it in the USA now where I am, but no idea where in the USA these labs are for Quest Diagnostics. Can anyone share and guide me to the steps to get this done? Thanks!
Helpful - 0
2 Comments
Yes, it is a good idea to measure your hbsag quantitative. In my view this quantity is the most indicative of how better your medication is working, as undetected hbv dna is easy to achieve.
agree, it makes sense to test it once a year and maybe consider interferon when very low
16584782 tn?1449394404
Beautiful
Helpful - 0
Avatar universal
Wanted to share more results. For those that remember, 3 months ago, my ALT and AST took a huge spike and my CK was at an alarming rate. I decided to not work out AT ALL other than doing some yoga. Within those 3 months, I was feeling ok but was feeling some twinges in my thighs for about a month and a half, so my muscles were a concern. It eventually went away but I did mention it to the doctor. Here are my latest results:

HBV DNA IU/mL: < 29 IU/mL HBV DNA Detected
Total Bili: 0.3mg/dL
Dir Bili : < 0.1 mg/dL
Ind Bili :< 0.3 mg/dL
AST (SGOT) - 28 (down 64 points)
ALT (SGPT) - 21 (down 29 points)
Creatinine - 1.20 mg/dL
Uric Acid - 8.3 mg/dL (up .2 pts)
Calcium - 9.2 mg/dL
Phosphorus - 4.4 mg/dL
pH - 5.5
CK - 148 U/L (Back down 3494 pts and into normal)
Parathyroid Hormone - Not measured this lab
HBsAg: Positive

Additionally, I got ultrasound results which showed my liver was completely normal. No damage to it at all. The ALT is the absolute LOWEST I have ever seen it. One thing to mention is that I've been very religious with my Vitamin D daily (10,000-20,000 iu a day) as opposed to a few months ago where I'd miss doses. I was going through a small depression for a few weeks but it wasn't worth mentioning to the doctor as it suddenly changed right on November 1st and I've been happy since.

I was also hoping that HBsAg was going to be negative but I really feel it's just VERY VERY close to changing. This new formula is indeed working the way it's intended to work and I feel better (people have commented I even look better) daily on it. I am scared on what happens with the FDA approval, as I mentioned before in another post, but being that I signed up on an agreement for 5 extra years, I should hope the drug company supplies the drug for the remainder of that time (mainly because I can't afford it monthly even with insurance, and my insurance may not approve it off the bat)... though my doctor did suggest there's a chance they may no longer supply it for free. Ideally, from what I read with FDA approvals and my knowledge of them from working in Pharma, they are supposed to continue on with the trials as a "Phase 4" where they honor the remainder of the trials until they are complete for research purposes while the drug hits the market. Anyway, hope my results help many and God Speed to all!
Helpful - 0
2 Comments
Hello LuckyMan316,
Please I would love if you can weigh in on this,
I started taking Mylan Tenofovir in September and I'm presently on the second bottle I take it 9:00PM at night after food(to prevent any side effect when I go to work) with immunace and Livolin. I noticed recently that my urine is seriously yellow in the morning and I have this bitter taste in my mouth(metallic/acidic taste) please is that a side effect of the medicine?

I would love to know if I can't stop my medication without any adverse effect I.e flaring up of my virus level or my LfT results(AST)
Hi Pitts_05 I am not a doctor but I can tell you from my experience what has happened. I'm not familiar with what "Mylan" Tenofovir is but I can only assume this is a form of TDF and possibly just a generic version. Maybe stef can weigh in on this?

Taking this medication at night is what I do as well. Having your urine as yellow is ok as it's a sign your liver is working fine. Be more concerned if it was any other color than yellow or clear. Are immunance and Livolin a type of medication? If so, you may be overdoing it with 3 different types of meds as well. I know sometimes vitamins can turn your urine very yellow as well, so if you are on any kind of vitamin combination, look into that. I had that issue when I took a VitaPack from an acne clearing solution.

As for the metallic taste in mouth, been there! It was most active when I was on  Tenofovir TDF. I'd be constantly washing my mouth with mouth wash and brushing my teeth to get rid of the taste. When I switched to TAF, it went away after a couple of months. So yes, this is a potential side (I am not the only member who has reported this). Hope this helps!
Avatar universal
Yes, to the extent that the speed of regeneration of mitochondrial dna is slowed down, it will lower the amount of mitochondria available for ATP production.
The degree of this effect is likely quite different for different tissues and it is not well known how relevant this effect is.
Other compensatory mechanism to drive mitochondrial biogenesis might become active and reduce the net negative effect, likely depending on a patients age and general health condition.

In the proximal tubuli of the kidneys a large accumulation of split off tenofovir from TDF definitely occurs and reduces the ATP  supply of these cells by reduction of the mitochondrial pool size, which explains the negative  kidney effects of TDF. Nevertheless this mechanism doesn't lead to a clinical relevant reduction of kidney function in most patients.

Lastly one must be aware that unspecified toxity effects unrelated to mitochondria  will exist to a variable degree for all antivirals .
Helpful - 0
1 Comments
Hi Studyforhope, thanks a lot for the excellent explanation as you always do :), though sometimes we would  appreciate it if you could use simpler sentences for those of us who do not have detailed knowledge about these complex subjects.
Avatar universal
Can you guys write a short version of al this comments/studies so everyone can understand ( i mean "
in everybody's language"). It will be great and we will appreciate.
Helpful - 0
Avatar universal
There is at this time no objective way to test optimal supplementation with nicotinamide riboside. You have to test it clinically and empirically, being alert for problems.
Helpful - 0
1 Comments
To Studyforhope, you have written the following in one of your comments about tenofovir, "These antivirals can also slow the production of mitochondrial dna by the mitochondria specific gamma polymerase, but no mutation is introduced into the mitochondrial dna...". According to my little knowledge the mitochondria are the power houses of our body; does it mean the fact that they are tampered with by the tdf would cause less energy and fatigue for those who use these type antivarals?
Avatar universal
Yes, I am aware of this paper and it feels good to hear that also TDF at 100 times clinical concentrations had no measurable effect on mitochondrial dna synthesis in the cell line used.

The problem is that these  company sponsered papers, while well done scientifically, are using a liver cell line derived from a cancer that might not be accurately reflective of the in vivo situation, unfortunately.
if have heard of muscle problems with tenofovir disooroxil fumarate..viread..from a few sources, with seemingly clear on-off testing results.
in the phase I study of entecavir I remember the reporting of substantial neurological problems at the test dose of 10mg in healthy volunteers.

Overall it is important not to vilify these important antivirals, but the overall impression is that these side effects are real and problematic in some patients.
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis B Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.