Introduction and tenofovir question for kidneys

Just diagnosed or new to the community
1

Hello!
Greetings all, after reading through a lot of the Forum and questions posted, everyone seems very positive and genuine and that is amazing to see.

I was diagnosed many years ago, I live in the United states, and when I was diagnosed I was feeling really tired, really weak and I had a pretty bad case of jaundice.
I don’t use drugs, I don’t drink, I had a pretty rough childhood but I’m really unsure of where I caught the hbv virus. In going to the doctor and being diagnosed he seemed pretty shocked, because there’s a vaccine for it in the United States it’s fairly common to get vaccinated …but my rough childhood and also growing up in the '80s, obviously I wasn’t vaccinated and therefore I am a chronic carrier unfortunately.

I believe I have had this for a while, and then it finally showed symptoms in my early 30s… but I really don’t know. During my initial diagnosis, the doctor, I think was just getting me to have some relief so he prescribed tenofovir, I wish I had waited to see what my body would naturally do to resolve this, I feel like just jumping on TDF right away caused my immune system to not trying to do its own thing but that’s water under the bridge.

Flash Forward years later, I take a 300 mg pill of
tenofovir on a daily basis, my wife is vaccinated, and we have a young child who is also vaccinated, my viral load is relatively low and I get tested around the 6th month mark, to keep tabs on my health and also to be able to renew the prescription, whicb is typically give it it to you in a 6-month stent.

My concern is that over the past year or so I have had incredibly foamy urine, I have watched my GFR on my labs slowly go down. Right now I’m currently hovering around 79, and I have Labs scheduled again in about a week to dive into that a little deeper.

I did have a urine analysis which showed abnormal proteins in my urine.
When I asked my current doctor about this it was a little frustrating, he said oh that’s very common, to have protein in your urine, your GFR is going to fluctuate, and I wouldn’t worry about it.

But then I go down the Google Rabbit Hole like most of us have, and I read about kidney failure related tenofovir, foamy urine is a predecessor to kidney disease, as is fatigue, Restless legs, which I have, I have a really hard time sleeping, and of course a dropping gfr.

When I asked him if I could switch from tenofovir,
To something else less abrasive, he seemed like it wasn’t something he would recommend because he didn’t think the issues I was having were severe enough to change medication. In my mind I’m thinking if you have a medication that’s so abrasive on your body, and there’s another option that is less abrasive and it relatively does the same thing I think it would be a no-brainer to switch. But I’m not a doctor.

So I’m wondering for those of you that have been on tenofovir for a while and have gone to something else less abrasive had you noticed kidney issues prior to switching, did that help ? did you have any other side effects from a different medication outside of tenofovir.

I am deeply concerned, i feel like i have to choose one organ over another, and while thats life with HBV, and its my own fault, this had caused a massive amount of anxiety, sleepness nights from a racing mind…

Anyone who has a similar situation ? Or any input would be greatly appreciated.

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Welcome to the forum, @MikeinAZ, and thanks for sharing your story. I’m sorry to hear about your worries about your lab results and completely understand where you’re coming from.

I have taken tenofovir myself for a while, but haven’t noticed any issues with my kidney values in my blood results or any other side effects.

I am also not a doctor, but I’d imagine the first thing your doctor would be trying to figure out is if it is a real signal (i.e. that the kidneys are indeed affected) or if it’s normal variation in your body. To do that, you would look at the results over an extended period.

Second, there are many causes to proteinuria, not just due to the tenofovir. These may be something your doctor considers.

Third, the fact that you’re actively and regularly monitoring means that you can catch any changes early before any significant damage occurs. If indeed the tenofovir is the cause, changing this can quickly revert your results back to normal. There are a bunch of options available if this is the case (e.g., switching to TAF or ETV or alternative dosing).

If it were happening to me, I would probably try to keep in mind that there are options and you aren’t close yet to exhausting them. I understand that fears and anxieties don’t always respond to rationalisations like this, but know that you aren’t alone in your journey.

Hope this helps,
Thomas

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Hi @MikeinAZ,
Welcome to the community and thanks for sharing your story. Many patients get infected through the birthing process where an infected mother passes the virus to the child. This is the case for many HBV patients. Some people do find out earlier than others. I found out in my 30’s as well, and feeling tired was actually what led me to find out that I have been living with HBV for my entire life but had no idea. I won’t be surprised if that was also the case for you. I understand your frustration with starting treatment early rather than waiting. The evidence shows that early treatment leads to better overall HBV outcome.

I was on Tenofovir for over 2 years when my doctor started noticing some problems in my lab work with my kidney function. After a few more tests, he recommended I switch antivirals as the concern for kidney damage remained. As @ThomasTu mentioned, so many things could cause protein in urine or the urine to foam.
It is good that you are keeping an eye on this. If this continues, revisit the conversation of switching with your doctor. If this medicine is not the culprit, you will know as your lab results will remain. But if it is the one, then things should improve. The majority of HBV patients on Tenofovir do not develop these issues, only a small number of patients see this.

I understand you are concerned, but do not overwhelm yourself. There are some options available to you: one is finding the real cause of protein in your urine, and the second is switching antivirals if warranted.

Yes, I had cholesterol issues with TAF, so I am back on Entecavir. I went on TAF due to fluctuations in my ALT and AST for some time. TAF did not help much with the fluctuations, but I remained undetectable throughout the switch, and my cholesterol level kept increasing. I did not have any cholesterol issues before making the switch, but there was a trend while I was on TAF. My cholesterol level just kept rising and I was not prepared to start taking statins. So I am back on Entecavir and my lab results from last month showed normal ALT and AST, and remain undetectable. I have been on Entecavir since September of last year. I will be getting a cholesterol test done soon. Every patient is going to have a different reaction or experience to any of these antivirals, so please engage your doctor to find what works for your case. Best, Bansah1

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