Yeah I can say that as sometimes when I might be in super quiet environment I had felt that ringing but that might be after a long working day or gym session whatever but as right after me starting Vemlidy I had it as my new campaigner and I hated it though if we talk about results I put it in to you all to see as how quickly i am recovering is astounding. I am Stil to finish my 3rd bottle of Vemlidy and I am at viral load literally 18 is/ml from 19 million just in 3-4 months. I hate the tinnitus but just getting used to it. No one believed me at first that it is from the meds but thanks for coming up @Dell coz I’ve seen this that not everybody tends to show the similar side effects. Still can’t understand my elasticity KPA but rest has cooled downed to normal.
Hi @mds8, I know your posts were almost two years ago, but still wanted to know if your rash/itchy problem went away and if you did switch from TAF to ETV (or other anti-viral). I’m asking because I started to have unexplained itchy/rash once in a while a month or so ago. Like in your case it didn’t occur right away after starting to take Vemlidy last November.
I would also like to hear from the experts in this wonderful forum @ThomasTu@availlant@john.tavis@Joan_Block as to whether itchy rash (especially developed later rather than ealier) is a common side effect?
I am not a physician so cannot comment in an informed manner about itch/rash from TAF or ETV. However, it is not listed as a common side effects for these drugs in the items I’ve read.
Itch/rash is a very common side effect of many protease inhibitors, for example for HCV. It can be severe enough to be dose-limiting in some cases.
I agree with John and Thomas that these side effects are uncommon with NUCs used for HBV in general but there are published case reports of skin rashes with TDF in HIV+ patients and at least one case in a patient with HBV. Onset of these rashes was reported to be between 24 h and 6 weeks after starting TDF. This means this it is possible (but still expected to be uncommon) with TAF as well. This should be discussed with your doctor.
@stef2011@ThomasTu@HealthExperts
Where is your evidence that TDF/TAF has side-effects long-term?
Antivirals are taking long-term, for life!
Your statement has alarmed me and I would like to read where you found your research.
Thanking you in advance
A search in Pubmed on kidney dysfunction and bone demineralization with TDF will yield studies on these effects. This was one of the reasons for the development of TAF. Also TAF is a new formulation with a longer patent life - driving higher prices for this medication.
While these side effects are observed with TDF, @stef2011’s comments need to be tempered:
Only a minority of patients experience these side effects.
These side effects are typically mild enough to be of little safety impact and in the case of kidney issues are easily managed by switching TDF dosing to every other day without impacting antiviral efficacy.
of course it is just my sister’s and my own experience using tdf and “while my side effect is very rare but dangerous osteonecrosis” both me and my sister developped osteopenia, cystatin C slightly out of range, creatinine clearance lower than 90…so nothing to be alarmed but keep an eye on these tests if on tdf for more than 10years
in any case there are always options, i switched to entecavir 1mg and kidneys/osteopenia reversed and osteonecrosis area stopped growing and got a little smaller after 1 year on entecavir
hopefully taf and newer tdf formulations are not going to have any of those side effects nonetheless i hate the idea of taking any type of drug for any condition for life
Yes yours and your sister’s side effects are very significant (but also VERY rare). No one wishes to minimize your and your sister’s difficulties. We just don’t want persons with chronic HBV to not take therapy out of fear for side effects. Far worse than these side effects would be the advanced fibrosis and cirrhosis of the liver which would eventually develop in MOST patients and the increased risk of liver cancer which would be present if they delayed take these medications out of fear of side effects.
You mentioned regular follow-up while on antiviral medications, which is an important part of current therapies. Side effects with TAF are almost non-existent because the tenofovir is concentrated more in the liver. With ETV and TDF, alternative generic formulations of these medications will not alter the relatively low rates of side effects as these come from the nucleos(t)ide analog drug component themselves.
In the meantime, we have a variety of solutions for persons experiencing side effects which include:
Reduced dosing of TDF.
Switching to TDF if side effects appear with ETV.
Switching to 0.5mg or 1mg of ETV if side effects appear with TDF.
Of course its clear that a finite course of therapy which restores immune control of infection without therapy (functional cure) is something that all patients are waiting for!
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
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.
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.
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?
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).
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:
weightlift regularly,
I take creatine supplement 5g per day (this may theoretically affect the kidneys),
take protein supplements, my daily protein intake is 160g per day (proteins are metabolized by the liver as far as I’m concerned)
take drugs for OCD: sertraline 50g x 2 times a day.
don’t drink alcohol, don’t smoke, avoid sugar, salt and sodas.
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
