Paul, thank you for your reply. I appreciate your kindness and support!
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I experienced one week of mild headache and deep lost of appetite after I started with Tenofovir but never experienced any other side effects since that time.
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Hello mds8
You are not the only one who experienced a severe skin rash after starting antivirals. I am a 60 yo Chinese female. I was put on Entecavir 3 years ago and developed a systemic rash all over my body. It was horrible. My specialist switched me to Vemlidy thinking it might be an allergic reaction. With the approval of my specialist I even started taking Vemlidy every other day to see if it helped the rash. The rash persisted and I saw an allergist and dermatologist but only after 7 months of suffering. I didnāt want to take many OTC antihistamines because of my HBV so I applied tons of cream, ice packs and tried to avoid heat/sun which worsened it. The allergist prescribed an antihistamine (Blexten) that is metabolized in the kidneys. It helped my rash significantly and after a couple of years of taking it twice daily Iāve been able to reduce my dose to 1-2x/week. I still have a rash but itās not as debilitating. The allergist gave a theory that my immune system started attacking my skin after my viral load started to decrease once I started on medication but it was just a guess. I had a very high viral load prior to taking Entecavir. I am now taking daily Vemlidy but perhaps because of my not taking it daily at first my viral load is unfortunately still not undetectable.
Sorry for the late reply. I havenāt been on this forum on a regular basis and I just saw your post today.
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Recently diagnosed HBV here when i was about to undergo tonsillectomy. Started Entecavir 2 and 1/2 months back. Experiencing weakness, mild urine color changes and discomfort. Do many have these symptoms on starting entecavir. Never had any of these symptoms ever before.
Dear @KWr,
Thanks for sharing your experiences. Some people do notice these changes, whether itās due to the drug or that youāre paying much more attention to your body is unclear. If it continues to be a problem, it is worth bringing up with your doctor about it.
Thomas
Hi Paul
What about tinnitus.
I have it since I started Vemlidy or maybe itās the anxiety that what I got to know is more than enough for me develop it. Could it be stress or side effect I am not too sure.
Cheers
Rana
Hi @Gourav_Rana,
I donāt believe that tinnitus is a side-effect of Vemlidy. It doesnāt show it on the side-effects pages.
If any of the experts have any knowledge of this, hopefully they can elaborate. Regardless, itās probably a good idea for you to bring it up with your physician and you could see an ENT doctor (Ear, Nose, Throat) to get checked. I do have intermittent tinnitus but I donāt believe it has any relation to CHB or any antivirals.
I hope you can get to the bottom of your tinnitus as I know at times, it can get maddening.
Good luck!
-Paul
Hey Paul
Cheers man, thanks for answering that for me.
I just guess it is all done by my anxiety as I am still new to find out about my diagnosis though I knew it since 2015. If you havenāt then please read my story, youāll know what happened. Itās just that I didnāt have any awareness about the disease. Iāve had minor tinnitus since I donāt know when just realised it when one day came across one of random video talking about tinnitus. That was funny and horrific at the same time coz Iāve been listening that ringing voice since ages and just realised that itās some kind of condition when I was thinking that itās stress or my left ear is the weakest of two like we all have an dominant eye and ear.
Well, yeah man thanks for the response Iāll definitely look it up with an ENT specialist and my hepatologist has no answer to it he thinks as well that itās not antiviral but as in your case if I could be exceptional.
Weāll figure out.
Many thanks
Rana
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I can say tinitus is part of some side effects of antiviral med.i started treatment last year with tenofovir 300mg unfortunately I could not continue with the med I was seriously sick for months even after I was ask to discontinue the med according to doctor advise.i never had tinnitus ever in my entire life tenofovir started it .I feel much better with entecavir no serious side effect am good.though tinnitus is still there but am coping well with it so far as am not too stressedā¦just want to make reference that I experience tinnitus due to side effects of some antiviral drugs
Dear @Dell and @Gourav_Rana,
I think @availlant had a post previously in response to another user @Smart55 that reported tinnitus
Hope this helps,
Thomas
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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 Iāve seen this that not everybody tends to show the similar side effects. Still canāt understand my elasticity KPA but rest has cooled downed to normal.
Cheers
Rana
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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). Iām asking because I started to have unexplained itchy/rash once in a while a month or so ago. Like in your case it didnāt 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?
Thank you all!
Hi all,
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 Iāve 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.
John Tavis
Agree with @john.tavis, I have not heard of TAF or ETV being commonly associated with itching or rashes.
TT
Dear @LetsCure,
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.
Best regards,
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@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
Dear @Caraline ,
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, @stef2011ās 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.
There is no cause to be alarmed.
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of course it is just my sisterās and my own experience using tdf and āwhile my side effect is very rare but dangerous osteonecrosisā both me and my sister developped osteopenia, cystatin C slightly out of range, creatinine clearance lower than 90ā¦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
Dear @stef2011 ,
Yes yours and your sisterās side effects are very significant (but also VERY rare). No one wishes to minimize your and your sisterās difficulties. We just donāt 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!