sorry i didn t mean to scare anyone away from therapy, hbv infection is of course much worse than any side effect, but just meant do test for possible side effects after decades on tdf and hopefully new formulations like taf and tenofovir amibufenamide will be available for anyone soon
unfortunately taf is not available for anyone in italy, only very old or osteoporotic patients or low creatinine clearance patients…my mother takes taf so we have all 3 firstline antivirals in my family
Dear @stef2011 ,
Tenofovir amibufenamide (TMF) is a new variant of tenofovir recently approved for use in China. There are no trials ongoing for TMF outside China so it is not clear if it will become available outside China.
TMF uses a modification also used to modify several similar antiviral medicines used to treat HCV which achieves a similar improvement in liver concentrations of the active compound tenofovir compared to tenofovir alafenamide (TAF).
While initial clinical trial data has shown similar antiviral response, normalization of ALT and safety of TMF compared to TAF, reversal of fibrosis appears superior with TAF. This is an important performance distinction between these two medicines which requires more analysis in clinical trials. Long term reversal of liver disease is an important component of response to antiviral therapy.
Thank you. I just felt if someone else was reading what you said might be alarmed and stop taking that medication, which we all know it’s dangerous, well can be.
I was affected by TDF had kidney infection and Osteoporosis, ended up, breaking my back. Which wasn’t as dramatic as it sounds. It’s not as rare as they say.!! We need to be aware of it to monitor kidney and bone density.
I totally understand not wanting to take a pill every day for life but that’s the way it seems to be going nowadays. My lifetime pills seem to be increasing nearly every time I go to the doctor.
My doctor said it’s about prevention. But I do worry how my liver is coping with all my medications and my doctor said there’s none I can stop taking.
Thank you for clearing that up.
Dear @availlant , my hepatologist recommends me to start thinking about taking antivirals, I am scared of taking them because I hear about renal dysfunction and bone mass loss. Are there any studies conducted that show what percent of people taking antivirals(specifically tdf) have renal dysfunction?
Also, do TAF and TDF both suppress the virus equally, or is one superior to the other at suppressing the virus?
Hi, I wanted to let you know that I experienced severe rashes when I started on ETV in 2018. I thought it was an allergic reaction to the medication so I was switched to TAF. However the rash persisted so I reduced my dose at the advice of my hepatologist. I applied corticosteroid creams, ice and Benedryl spray to try to relieve it. The only treatment that eventually worked after seeing an allergy specialist was a prescription antihistamine (Blexten). I ended up taking it 2x/day for a year and a half. It greatly reduced my rashes. The allergy doctor surmised that due to my previous high viral load my immune system started attacking my skin once my viral load started to go down. He might have been right because my symptoms subsided when my viral load started to go up. A resistance test on my virus found a never before discovered mutant virus that was resistant to Tenfofovir but not Lamuvidine. So I was started on Lamuvidine as well and my viral load is going back down and my rashes are increasing again but less than before and I’m not taking antihistamines regularly. It’s uncomfortable but I’d rather my viral load go down and deal with rashes. Hope that helps.
Dear @Anonymous63,
There is a lot of confusion in the patients community regarding the actual impact of currently approved oral antivirals on kidney function (KF) and bone density (BD).
There are a lot of studies which have evaluated KF and BD with the three most frequently used oral antivirals (entecavir (ETV), tenofovir disoproxil fumarate (TDF) and tenofovir alafenamide (TAF)). In understanding this problem, it is important to realize that there is a difference between minor changes in KF and BD (which are formally considered toxicity but have no clinical impact of patients) and clinically relevant changes in KF and BD, which may require dose modification and or switching antiviral medication.
Generally speaking, impact on KD and BD are different with these medications in the following order:
ETV > TDF > TAF
Changes in KD and BD occur in ~5% of patients taking TDF with most of these changes occurring in patients > 60 years of age. Development of kidney disease or clinically significant reduction in BD occurs less frequently than this and also in patients > 60 years of age. These can be treated by either switching from ETV to TDF, dose reduction of TDF (taking it every other day) or in most but not all patients, switching to TAF.
There are no meaningful differences in the antiviral activity and clinical benefit of ETV, TDF or TAF (note that TDF and TAF are different prodrugs of the identical antiviral compound, tenofovir). However, both ETV and TDF are much cheaper than TAF as these drugs are no longer protected by patents.
So for the large majority of patients, long term therapy with oral antivirals is very safe. This must be balanced against the risk of developing liver disease in patients with chronic HBV infection, which frequently occurs if HBV infection is left untreated.
You should not be afraid of starting antiviral medications. The chances are that you will not ever experience any side effects with any of these medications.
Hi, doctor @availlant
I’ve been reading about the contraindications of tenofovir and, if I’m not mistaken, they prohibit the use of anticonvulsants (such as pregabalin) together.
When I acquired HBV I was taking this medication (pregabalin) for neuropathic pain and I always conjecture that this may have somehow helped it become chronic. My doctor said it was unrelated, but given the way Pregabalin works, I always think it influenced it in some way.
Are there any studies in this regard? and if there is a contraindication for use together with TDF, what specifically is this due to?
thanks
Dear @La.sciamachie,
There is no data suggesting that your use of pregabalin had any influence on your HBV infection. Additionally, there are no reliable data suggesting interactions between pregabalin and TDF or TAF. Pregabalin is safely used with a wide variety of drugs in the same class as TDF (nucleos(t)ide analogs).
Hello afer a while,
My hepatologist advised me to go on medication. He prescribed Viread (Tenofovir disoproxil 245 mg, manufacturer Gilead).
First, I’d like to share my results from recent months. (I don’t know how to interpret some of these records)
March 2024: 63000 IU/mL
November 2023: 1.70E+04 IU/mL
May 2023: 1.00E+04 IU/mL
December 2022: 3020 IU/mL
May 2022: 6918 IU/mL
March 2024: AST (GOT) 26, ALT (GPT) 31 — this should be normal. Fibrosis F0-F1.
I’d like to ask how can I mitigate side effects of this drug which it can have (judging by the leaflet). My main concerns are:
– bone density loss
– impact on kidneys
– muscle loss
– ability to drive a car
– diarrhea
Have you experienced any of these? Today I took the first pill. I’m 32 male. 183 lbs (83 kg), 6 ft (183 cm).
I may add that I:
What to do to live healthy in that condition? Maybe should I take calcium supplement and vitamin D? Will also taking Tenofovir before going to sleep be a better idea than in the morning? Will it minimize adverse effects during the day? I’d be grateful for your advice.
Viread does cause side effect . If your weight is in the normal side, sude effect is not that much but you need to monitors. If you can afford Vemlidy at 25 mg . This pills has been approved a few years but with little side effect
I’m no doctor but I can let you in on my experiences.
First off, I take Tenofovir in the morning…always have. I was told to be fairly punctual without and not miss a dose. Only issue I had with the med is itching and I have been on Colesevalam 2x/day since…first in a stronger powdered version then capsule.
Keep in mind that so many meds out there have a list of POSSIBLE side effects that often don’t present at all
I work out, too. IF you have gone through the loss of muscle mass, do resistance training with bands for a couple of months before hitting the weights again. Smith machines are best to start with as your stabilizer muscles will have gone, too. Low weights and slow reps and sb good to start back in weights within 3-4wks.
Watch how much creatine you take and schedule it to 4 weeks on and 2 weeks off…check with your doctor to see if your natural creatine levels can handle the extra. And SOME sugar is good for stamina. I was told to keep my sodium intake to no more than 2g (2,000mg)/day and it’s quite doable…
Good luck!
Denny
Hi @Arb,
I just want to mention that most people have absolutely no issues when taking these medications (I myself am one of them).
I don’t think any studies have shown how to avoid them, but there is always the option to switch to other medications (e.g. entecavir) or change how you take them (e.g., morning vs evening, with, before or after food, etc.) that might help.
Thomas
Greetings! Has anyone taking tenofovir experienced severe night terrors before? My partner is experiencing them and the aftermath will leave him spinning for days afterwards - confusion, memory issues, etc…
This wasnt ever a thing prior to him starting tenofovir.
Thx!
Hi @Aria_Wrenn,
I took tenofovir for almost 2 years and did not experience anything at all. If this has been going on for sometime now, I strongly recommend your partner see his or her provider as soon as possible to get to the bottom of this. This might not be from tenofovir, rather something else might be going on. Best, Bansah1
Hello @Aria_Wrenn
Sorry to hear about your partner. I also have never heard of this side effect, as Banash1 has said.
I suggest you see a doctor soon.
Blessings
I am 46 and have been living with Hep B since right after birth. All my blood levels are great and an MRI scan of my liver shows no fibrosis.
My hematologist still thinks I should take Vemildy, even though all my blood levels look good.
I’m e antigen negative. I recently did a test for mutations and I have Hep B mutations. I’m also wondering about starting Vemilsy.
Welcome @MartaParnall
Thanks for the interesting question.
One I am unable to answer correctly,
Someone will be along soon and they will have more knowledge than me.
I think new guidelines have been introduced from WHO.
So glad you found us.
@ThomasTu @Bansah1 @availlant
Hi @MartaParnall,
Welcome to the community and thanks for your question. My understanding is that people with HBV e-antigen negative with normal or mildly elevated ALT/AST can benefit from antiviral treatment/ are recommended to treat. The question now becomes whether your mutation will lead to resistance or not. This is where the HBV becomes resistance to treat meaning none of the current treatments will be helpful. This should be something to explore more with your provider to understand what your mutation means.
You can read more about the first part here, I found this article about a retrospective study on HBV e-antigen negative and treatment. Effectiveness of antiviral treatment in HBeAg-negative chronic hepatitis B patients with normal or mildly elevated alanine aminotransferase: a retrospective study | BMC Gastroenterology | Full Text
I hope this helps. Bansah1
Hi @marta,
There is increased recognition that liver disease can still progress with normal ALTs (though not as quickly as raised ALTs) if you have sustained high levels of HBV DNA in HBeAg-negative phase. This may be the reason why your doctor is suggesting that you consider antiviral treatment.
Hope this helps,
Thomas
Welcome, Marta. Hope you get as much help as I’ve received from the people on this site. The stigma attached to this disease is left at the door for awhile which is very helpful to the psyche.
Take good care.
Denny