Tonight I officially start TAF - I'll put all my results here

[luckyman316]

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.

[Hectorgonz]

For how Long are You chb ? Do you have any Symptoms Atm?

[luckyman316]

I thought I commented but it's not there. No current symptoms other than slight tinnitus (ringing in ears) which is typically not a symptom of CHB. It was more severe prior to treatment. Curious to see if it goes away while on TAF.

I've known about my CHB since July 2013. Prior to that, if I had it, I had not idea about it or how long I have had it.

[landloper]

I have CHB and I also have tinnitus. I recently found out it's due to having "Glue ear". Maybe you should get someone to look at your ears in case you have the same thing.

[landloper]

I have CHB and I also have tinnitus. I recently found out it's due to having Glue ear. Maybe you should get someone to look at your ears in case you have the same thing.

[sorte]

Did your fibroscan changed during a trial ?
And how about bone's scans results ?

[luckyman316]

I must correct myself. I initially started with F0 before the trial and went to F1 during the trial. It's still at F1 as of this writing but very minimal it seems.

[luckyman316]

There has been bone density loss, which was reported via DEXA scan.. results can be found in old post. I'm going for another one again soon and will have those results. Last test that took Fibrotest showed  it went from F1 to F0. The blood results for this latest test will have the latest score. I'll know in a couple of weeks.

[luckyman316]

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.

[sorte]

thanks for report, waiting for even  better results after TAF :)

[needadvicewithhep]

Cant you become part of a phase 4 trial?

This way you will get long term access to TAF and no charge. No?

[needadvicewithhep]

???

[luckyman316]

My next best result would be going from F1 to F0 or becoming HBsAg Negative :)

[sorte]

Hope so ! :)

[luckyman316]

I don't believe there is a phase 4. I am on the last part of the trial already. If they don't get approved by FDA, then it'll be extended. In some cases, the offer to extend or continue even after approved just to collect more data.

[sorte]

Some drugs have Phase 4, it's just long term observation after drug has been approved.

[needadvicewithhep]

Phase 4 are long term observation.
Save you money and get you TAF.

Might be worth asking your gastro about :)

[luckyman316]

Wanted to update on there, since it seems like it's been a while. I've completed 3 months on TAF and guess what? I physically feel a LOT better. A lot of the things I was experiencing while on the TDF vs. TAF portion have almost subsided.

I got my blood drawn today and should have results in 2 weeks from it.

There is also huge news. I have been asked to extend my TAF formula study for FIVE MORE YEARS. I obviously said yes to this. During the 5 years, I will be coming back every 6 months instead of every 3 months. They will also be using my blood for additional research towards development of other drugs and a potential cure down the road.

Needless to say, I am excited for this opportunity to be involved in this. While I hope my body clears this virus within those 5 years, I am not at all upset about the extension and could potentially help many others in need.

I'll update when I have additional results.

[sorte]

what sympthoms stopped when you've switched from TDF to TAF and what stayed ? Any better kidney/bones results with TAF ?

[luckyman316]

Yup, it happened. 5 More years.. thanks for the heads up!

[bigmoviebuff]

wow 5 years of free drug treatment.
congrats!

[joc2011]

I have been on TDF for 5 years now, and actually wish i could switch to TAF, cos i sometimes have heavy symptons, and feel dose might just be too much.
Any ideas of where i can purchase?

[luckyman316]

It's not available on the market yet so you can't purchase it. Only available through the trial, as far as I am concerned.

[luckyman316]

Hard to described the symptoms. For the most part, I feel stronger than I did prior to officially TAF. I had some major TMJ/TMD symptoms and while not all gone it's been a LOT better with TAF only. Also, my tinnitus (ear ringing) was there as well and some days it was pretty bad. While still there, it's now very faint. I was also pretty lethargic and was lacking some energy. It's gotten better with TAF only.

As for bones and kidneys, I'll know about kidneys in a couple of weeks... bones in a few months on the next DEXA Scan.

[sorte]

thanks, let us know about those results too

[luckyman316]

Wanted to share some more, got results back after 3 months of TAF. Here is what I can share:

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) - 31 (up 7 points)
ALT (SGPT) - 35 (down 5 points still NORMAL)
Creatine - 1.20 mg/dL
Uric Acid - 7.0 mg/dL (down 1.2 pts)
Calcium - 9.6 mg/dL
Phosphorus - 2.6 mg/dL
pH - 7.0
CK - 407 U/L (This is very high and well above normal by over 200 pts. Thoughts? )
Parathyroid Hormone - Doesn't look like this was measured this time around
HBsAg: Positive

Overall, besides the CK and the positive HBsAg, I'm satisfied. My Glucose levels were elevated on the blood test but on the urine test, they were normal. So I'm not too concerned but will need to cut back on some sugar.

Overall, I feel more energetic that I normally have and have been able to focus and concentrate more since being officially switched to TAF. I've got 5 years of this (unless I clear before that or a cure comes out) so I'll be updating on how this goes for me. Just wanted to share!

[Jason_256]

Is ck the same as cpk? If so my CPK has been around 500-600 for over 7 months. It caused any side effects that I had to stop treatment for 3 months now. Enticavir raised mine to the 200 range but Viread got nearly 700. That's why I haven't worked out over a year. Does your whole body hurt? Muscles or joints? Also if you worked out before test, then ck might be elevated because of that.

[studyforhope]

In the urine, the only normal glucose level is zero. To have a positive urine glucose test you have to have very substantially elevated plasma glucose levels.
Thus, how high was the blood glucose level that you said was elevated, but you are not concerned?

[Royal36]

Thanks lucky man hope 'll get cured before the 5 years.

[nomaniko]

Can hepatitis b cause one to loose weight.

[luckyman316]

Yes, Hepatitis B can cause you to lose weight. This happened to me when the virus was active inside me (apparently it was not prior) and I lost a good 30lbs in 2 weeks.

[luckyman316]

Hey Jason, most of my body does hurt... muscles and joints both. For the most part though, it's mostly in my neck which is terrible to say the least. But I am able to push through it and with a right Vitamin D3 regiment, it gets better -- of course, I've been cutting back on Vitamin D3 a LOT lately to see how I would react. I can assure you that I've felt stronger while on TAF, as opposed to TDF which was causing me some bone issues I believe.

I don't think CK and CPK are the same. Like you, I have not worked out with ease like I used to for over a year. I'm definitely weaker than I used to be and this started prior to medication. On the bright side, I'm still very active with sports and have found various other outlets for a working beyond the gym (yoga, walking/jogging, etc.)

[studyforhope]

CK and CPK are just two different abbreviations for Creatine Phopho Kinase, often also called Creatine Kinase.

[Jason_256]

Have you had your Testosterone levels checked? Total T, Free Testosterone and Weakly Bound, Estradiol, Dhea, and Sex Horm Binding Glob? I found my Free testosterone is really low and Sex Horm Binding Glob extremely high. I think Sex Horm Binding Glob is high because of hbv and Free Testosterone is low because of hbv plus nucs. Free testosterone  is more important than total testosterone. Im using testosterone shots(self trt) and taking proviron to see if my symptoms will go away. I'm also taking keto dhea which seem to be helping some.

[sorte]

Jason: what is your age ? I'm not on tdf and my testosterone was slightly above the norm, so it's rather not related to hbv.

[Ram1982]

Hi,

I am inactive carrier without any medication. Even I am.feeling neck pain. But it's there since 20 years, but I got HBV recently. So, I don't think neck pain is related to HBV. My opinion.

[luckyman316]

Need to comment here, just got another test done and a LOT of weird stuff happened. I'm curious as to what is going on. Maybe stef2011 or someone can help answer:

CK - Jumped up to 3642 U/L
ALT (SGPT) - Jumped to 50 U/L
AST (SGOT) - Jumped to 92 U/L

I don't have full results yet but curious as to what people think... I am attributing my CK to my workout, since I did not go to the gym for a year and started again 2 days prior to my test.

My ALT and AST baffle me because my habits have been good if not better, but the only thing I can suggest is that I did not take my 10,000iu daily for almost 2 weeks. Would not taking it cause a liver spike like this?

[Aduiski]

recent initiation of gym is known to cause elevations of liver enzymes, so thats likely the cause...

[luckyman316]

Wanted to share some more, got results back after 6 months of TAF. Here is what I can share:

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) - 92 (up 61 points)
ALT (SGPT) - 50 (down 15 points)
Creatine - 1.20 mg/dL
Uric Acid - 8.1 mg/dL (up 1.1 pts)
Calcium - 9.6 mg/dL
Phosphorus - 3.4 mg/dL
pH - 5.5 (down 1.5)
CK - 3642 U/L (This is very high - Thought is this was related to weight bearing training)
Parathyroid Hormone - 53.1 pg/mL (Falls within normal range)
HBsAg: Positive (Was hoping this changed but I think it's getting close. No HBsAg available here in the states and while the trial is supposed to measure it, it's for internal use only and unfortunately I do not have the finances to do this test on my own).

The big concern is the ALT and CK jump. Everyone has said this is due to weight bearing exercise. I find it hard to believe it would make my liver enzymes jump. Someone else mentioned this also happened to them when they went on TAFT a few months before losing HBsAg *which I hope is what is going on here* as the liver is now healing itself.

Hope everyone has a great day! :)

[landloper]

Weight exercises don't make your liver enzymes jump. They make your muscles break down and rebuild in order to grow. When they do they release ALT, the same as your liver does when it's regenerating.

[Bm2016]

Here is my opinion on the result, low hbv dna and elevated alt could mean your immune system is responding to the virus as well, mine took 3 to 4 years of constant elevated alt before hbsag became non-reactive

[luckyman316]

This is exactly what I am praying for!

[Bm2016]

And after i've developed hbsab, took almost a year before the the elevated alt was lowered to 30. It seems like a very slow healing process. Just need to make sure elavated alt is not caused by others like fatty liver, hcc, cirrhosis, can be verify by test like, ultrasound, liver biopsy, fibroscan.  Also one should be able to notice changes physically as the immune system gets stronger in fighting the hbv.