Hi all,
The doc told me today that Tenofovir is available here in my country.
Would anyone like to share their experience with Tenofovir ?
Br,
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Hi @Br
I have been on TDf for the last five years with no side effects, no resistance and my viral load became undetected 3 months after the first dose.
Regards
Kinoti
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Nice to hear no side effects, I hope the same for me too, the doctor decide to take another blood test next month to decide on medical treatment.
Hi all,
I’ve never taken tenofovir, but as a HBV researcher working on drug discovery I can provide some context about the drug. It is a nucleotide analog drug that stops HBV DNA replication. It was originally developed for HIV, but it works exceptionally well against HBV because both HIV and HBV replicate by a similar biochemical mechanism (reverse transcription). Tenofovir is one of the 2 most commonly used drugs vs. HBV (the other is Entecavir, another reverse transcription inhibitor). More info about it can be found at Tenofovir disoproxil - Wikipedia. Tenofovir is sold in 2 forms, TDF (that is what is discussed in the linked article) and TAF. They work the same way, but they have different “prodrug moieties” on them. Prodrug moieties are inactive parts of the molecule that hang off the active part to help it get where it needs to be and then get cut off, leaving tenofovir to do its job. TDF is an older drug that is well tolerated in most people. Its patent protection has expired, so it is a generic drug in many countries. That greatly reduced its price in many places. The most common serious side effect of it is that it can cause kidney problems in some but not most people. TAF is a newer drug that was designed to limit the kidney issue. It is still under patent and likely to be much more expensive.
I hope this context helps.
John Tavis.
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I’ve also been on Tenofovir for years and have had no side-effects at all.
It took me a few years for me to reduce my viral load from more than 1000000000 to almost undetectable.
TT
Hey Thomas,
Holy Hepatitis! I thought my viral load was high before I started treatment and was diagnosed with cirrhosis. It would range between 3 and 4 million back then.
Since then, I have read a couple of higher numbers posted on this forum but over 1 billion? What stage were you at when it was that high and what causes it to be so high? I am glad it was easily controlled with antivirals because that would have caused a lot of liver damage had it continued, correct?
Well, we are lucky to have you, so it was fortunate all around that such high numbers were able to be reduced so well.
-Paul
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Hi @PuallyHBV,
It was basically while I was transitioning out of immune tolerance phase, my ALTs were starting to come up though my virus load was still high. I decided with my doctor to start treatment then to limit any additional inflammation.
TT
I have been on Tenofovir for 2 years and went through the raise of ALT, AST when I first started. Currently, ALT is still elevated between 55 to 75. Apparently, there can be a transient flare during the initiation of therapy. My issue is that my liver has been showing an increase in echotexture consistently ever since I started the medication. The last elastography scan showed a raise of kPa from 3.8 to 5.38. My specialist is considering putting me back on Entecavir which I have been on for 5 years before I switch to Tenofovir. I was advised that it’s a big risk to do so due to the high possibility of developing resistance.
I would appreciate some advice. Many thanks.
Hi @Sahara,
As far as I know, the risk of Entecavir resistance is quite low (~1% of cases), though it would depend on the initial reason you changed from entecavir to tenofovir.
It’s hard to know if it’s the right decision for you given each patient is different. If your current medication isn’t working then it may be right that you revert back to one that did work before. It’s also unclear if the tenofovir isn’t working (for example, is your viral load high again?).
A liver specialist with your medical history is in the best position to give you the best advice. Have you tried to raise your concerns with your current doctor? If you are worried that your concerns aren’t being heard, then you should consider getting a second opinion.
Hope this helps a bit,
Thomas
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Thank you for your kind attention. I am most grateful.
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Hello,
I was on Tenofovir but stop taking it because I had elevated serum levels of creatinine in my urine test and because of the pain I was starting to have in my lower back. I think my kidneys were starting to feel the side effects of the medication. I am on Entecavir now and hopefully it will be fine.
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Dear @iamjen,
Yes, this appears to be the appropriate medication to treat Hepatitis B and is used as first line therapy.
Thomas
Yes. This is the older prodrug form of tenofovir. It is one of the front-line nucleos(t)ide analogs against HBV. It is the normal adult dose (but always follow the dosing pattern your doctor tells you).
I hope this helps.
John.
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Does the medical come in manufacturer bottle and not prescription bottle you get when getting meds from a pharmacy.
I ask because I don’t know. I remember my father use to get cancer meds bc it wasn’t something you just get prescribed and get at the local stores. So guessing hepatitis b medication isn’t something that a regular pharmacy would have in stock.
I guess another thing to worry about
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Hello Thomas,
My liver specialist said that those who go on Tenovir stop after 5-7 years. Can you or any verified health experts here explain what likely paths occur after these years?
Hi @CLC,
The majority of patients on tenofovir will have normalisation of their ALT levels and reduction of HBV DNA levels down to <10. Most people will stay on tenofovir beyond 7 years though (should be taken long term, i.e. decades, in most instances).
Hope this helps,
Thomas
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Hello, I’ve been on Tenofovir since June and I for notice lower right back and tenderness in my lower abdomen as well. All my alt and ast have been “normal liver function” and I was down 70 in viral compared to 1 million before first starting. I worry a lot because I’m still trying to accept this diagnosis and the things I noticed! When I mentioned about my kidney function my dr told me to contact my PCP, lol!! I wanted to switch to TAF(vemlidy) for many reasons I’ve read about Tenofovir being hard on the body, but my insurance won’t accept/pay for
Dear @AriesWarrior36,
Thanks for your question. It sounds like the tenofovir is working as expected to lower your liver inflammation and viral load.
The best way to determine if you have kidney issues is getting a blood test. Pain/tenderness is not necessarily present when you have kidney function changes, but also pain/tenderness in these areas can have many causes (most commonly muscular).
TDF rarely is associated with asymptomatic changes in kidney test values. If this is indeed happening, another option to consider is entecavir.
As mentioned by your doctor, it is best to follow up with appropriate testing through a provider.
Hope this helps,
Thomas
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