Terbinafine Loss of taste

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I had taken terbinafine for about six weeks for a toenail infection when my sense of taste pretty much completely disappeared over the course of 3-4 days.  I have a vague salty/bitter taste in my mouth, but nothing tastes of anything....sweet, salt, bitter...all gone.  I can put pure sugar on my tongue and not taste a thing.  That refreshing zing you get from toothpaste?  Gone.  Everything tastes grey at best, or just nasty at worst.

The infection responded well to terbinafine - I have about 4mm clear nail now, but I've decided to stop taking it as nothing is worth this cost.  I've switched to Loceryl lacquer but I don't even care about the nail anymore.  I just desperately want to be able to taste things normally again.  I can completely understand how this can cause weight loss and depression.  My advice would be to avoide terbinafine.

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  • Posted

    Hi Jonathan....my husband took terbinafine for about 2 months....and he has been off the med for about 4 weeks. He has been so depressed about the lose of taste. He is so glad that there is this forum so he doesn't feel alone.

    • Posted

      Hi debjefwat99, Tell your husband to hang in there.  I took terbinafine for 10 days and lost my taste.  Not just lost it, but always had a horrible bitter taste in my mouth.  I lived on listerine strips and goldfish crackers (surprisingly even though sometimes the taste was salty they helped a lot).  I got very depressed and thought my taste would never come back.  It took 16 weeks for it to come back fully.  It was one of the worst times of my life.  This same exact thing happened again in October when I was prescribed Meformin and I just got my taste back now (another 4 months).  The only thing that I see that these two drugs have in common is the word "Hydrochloride" after them.  There has to be some kind of connection.  Anyway, tell him taste will come back, but it will be a slow process and some days it will be good, and some days won't.

      Donna

  • Posted

    Well my husband is finally getting his taste back after 10 weeks.....he started getting alittle back at 8 weeks. I think he's about 99% now. Please everyone don't lose hope it will get there. He has lost about 10 lbs from the ordeal.

  • Posted

    I'm 51 and kinda skinny and lost my taste after 5 weeks. I continued for another 5 days because I didn't know what was happening but still wanted to get rid of my fungus. Now I found this forum and will stop. I've had fungus forever on my toes but I just got it on my pinky finger. I used Lamasil 15 years ago and it worked on my toes for like a year but then it came back. Why did I do it again? I couldn't stand the thought of it on my fingers and I thought it was safe, my "specialist" didn't warn me about any side effects. When I told her about the loss of taste she just suggested I switch to something else but didn't really raise any alarm. Thank god I found this forum or I might have stayed on it for another 6 weeks. You all may have saved my taste buds. So thank you. And thanks for the encouragement that my taste will return. Like others have said, you don't know how bad this is until you experience it. Has anyone found anything that helps your taste to return? I've seen Zinc and Alpha Lipoic Acid mentioned.

    • Posted

      Hi!

      First of all - good to read that you have quit the meds. I took Terbinafine for 6 weeks last year, I stopped when my taste disappeared and the horribel taste appeared instead. Today it is 8 MONTHS sinse I stopped taking them, my taste still haven`t completely returned, and I still have some bitter/acidic taste in my mouth almost all the time... sad So apparently there are individual factors regarding when the taste will return (if it returns completely) - but my nails and skin are healed, though. I have tried Zinc - but since the reason for the tasteloss may be caused by some sort of shut-down of enzymes, my PD suggested the body have to heal it self (and he told me these type of neurologic side-effects may take a loooong time to get better for some people - apparently I am one of those)

      Best of luck in your recovery! (pardon my English, but I am Norwegian...)

    • Posted

      hey i have a similar story to you except mine is from, peridex a mouthwash, im on week 6 and i still cant taste everything right. i can taste most things but some foods are off, its hard to say if its getting better or worse but im getting worried ill never get mine back.

      I never lost all my taste but I did notice some of my taste is muffled, this is really terrible. some people said it took them 9 months from using Peridex mouthwash, some people said years, some people said 2 weeks some people said a month. This is really driving me crazy, even though I didnt take lamisil like you guys Im suffering from peridex, a mouthwash, i guess its pretty strong. I only used it 4-5 times. Im really scared it wont come back..

    • Posted

      It's been 6 weeks since I stopped taking Lamisil and my taste is mostly back. Hang in there everyone!

    • Posted

      Someone just recently asked if the Lamisil was working to get rid of the fungus. I took it for 6 weeks and it did not cure my pinky finger even though I thought my dr said that for fingers you would only need to be on it for 4 weeks. I was also taking it for all of my toenails, hence the three month prescription. Some of my toes have improved but mostly they're the same. When I stopped taking Lamisil because of the loss of taste my dr switched me to a nail polish lacquer that i have been using every day since and it hasn't done anything for my fingernail (which is about to fall off) and I don't know if it has helped the toes at all or if they are only better because of the Lamisil. I am suppose to keep using the lacquer for another 4 months.

  • Posted

    My husband had it on a few fingers too....he has his taste back 100%....being on the med did help his fingers. We got nonyx at Walmart and have been using that on the fungus. But it will take longer. But he said he will never take it again.
  • Posted

    hey i have a similar story to you except mine is from, peridex a mouthwash, im on week 6 and i still cant taste everything right. i can taste most things but some foods are off, its hard to say if its getting better or worse but im getting worried ill never get mine back.

    I never lost all my taste but I did notice some of my taste is muffled, this is really terrible. some people said it took them 9 months from using Peridex mouthwash, some people said years, some people said 2 weeks some people said a month. This is really driving me crazy, even though I didnt take lamisil like you guys Im suffering from peridex, a mouthwash, i guess its pretty strong. I only used it 4-5 times. Im really scared it wont come back..

  • Posted

    hey i have a similar story to you except mine is from, peridex a mouthwash, im on week 6 and i still cant taste everything right. i can taste most things but some foods are off, its hard to say if its getting better or worse but im getting worried ill never get mine back.

    I never lost all my taste but I did notice some of my taste is muffled, this is really terrible. some people said it took them 9 months from using Peridex mouthwash, some people said years, some people said 2 weeks some people said a month. This is really driving me crazy, even though I didnt take lamisil like you guys Im suffering from peridex, a mouthwash, i guess its pretty strong. I only used it 4-5 times. Im really scared it wont come back.. but you guys gave me hope. it feels like some days i can taste more and some days i cant. 

  • Posted

    I am grateful for blogs like this as it helped me go through my ordeal of taste loss. I was on Terbinafine for 3 months with no improvement. During the first week of next refill I had lost my sense of taste but at first thought my food was off. When I ate something I knew should be sweet, I knew it was me. Since it was a long weekend I knew my dr. and my dentist would not be available. I had a hunch it could be the Terbinafine so I googled it, when I learned it was a side effect I stopped taking it. I was going crazy not only from the loss of taste but the horrible "metallic" and salt tastes. My dr. had never heard of these side effects. She knew about liver problems but had given me blood tests. She sent me to ENT who had never heard of it either but told me at my age it may  take 8-10 weeks for the taste buds to regenerate. It did take 8 weeks for my first taste to come through. It was sushi which overrode the salt taste. It took several more weeks to taste more. The salty taste took much longer. I would drink water and it would taste terrible. I was extremely thirsty all the time. It took 16 weeks for the salt taste to disappear.  I was depressed when I thought the taste loss would be permanent. I notified the company Aurobindo which I gave my story to twice. I asked them what would reverse the symptoms but there was no answer. They were concerned with the batch number. I wanted to contact a drug watchdog organization but could not find one. I did give my info to the FDA. I think we are all numbed by hearing side effects on TV ads. We think it can't happen to us. What are the odds? Well, I guess was in the 2%. Next time I will read the label more carefully.

     

  • Posted

    38, male, 73", 180 lbs, BMI in the 20's (probably), I'm pretty active and generally in good shape other than some lower back pain. I started taking Terbiniafine in early April and stopped taking it June 3 (about 8 weeks worth of dosing) because I found this forum after trying to figure out why I wasn't able to taste anything. "I have a vague salty/bitter taste in my mouth, but nothing tastes of anything....sweet, salt, bitter...all gone. I can put pure sugar on my tongue and not taste a thing. That refreshing zing you get from toothpaste?  Gone. Everything tastes grey at best, or just nasty at worst" is a perfect description. Fatigue? Depression? Dyspepsia? Check, check, and check. I could deal with those knowing it would pass after I stopped with the medication. I was even starting to deal with canker sores under my tongue and on my salivary glands. But loss of taste? That's a bridge too far. Hopefully the toe fungus is dead but, if I had to chose, I'd gladly accept an ugly toe for the rest of my life to get back my sense of taste. You simply can't appreciate taste until it's gone. 

    • Posted

      Day 26ish. Taste is still way jacked up. This is what I imagine hell is like. I can smell everything but then, when I eat, it all tastes horrible. It’s like I’m constantly getting tricked and it’s very depressing. Speaking of depression, I’m still feeling that too. And tiredness. There’s just a general lack of desire to do most everything. I’m sure my dislike for food is only compounding the depression and energy loss. So far, I’ve lost 9lbs and I’m already skinny. My advice is to just learn to live with the fungus. The risks/reward matrix for this medicine skews heavy to the negative side. 
    • Posted

      I found that Bikram's (or Hot) Yoga is a great way to improve the mood and lower back pain. Definitely try the malted milk shakes for some recognition of a taste-like sensation and it may keep a few pounds.

    • Posted

      Hang in there - I know it's tough, and I wish so much I would have had a forum like this to talk to others about, because I just remember the tremendous hopelessness and loneliness I felt - nobody understood what I was going through.  I was on Terbinafine only 10 days and immediately went off of it when my taste went.  It was a horrible salty/bitter taste that I couldn't get rid of and I could not taste anything when I ate.  I got very depressed but I actually gained a little weight because I was living on goldfish crackers and other salty snacks as that was the only thing that relieved that taste.  I also lived on listerine strips because somehow that also helped - but ended up with huge canker sores all over my mouth and tongue.  I really felt like the taste would never come back - my doctor and pharmacist had never heard of this reaction.  It came back after 16 long weeks.  That was several years ago and last fall my doctor put me on a drug called metformin and the exact same thing happened and it took another 16 weeks.  At least this time I knew it would return - but it was still eternity.  I started googling both medications trying to find out why 2 different ones would cause the same reaction. The only thing that I could find was that they both had the word "hydrochloride" after them.    But again, hang in there, it WILL come back.

      Donna

    • Posted

      How are you Willy? Are you hanging in there? I'm feeling that same depression and fatigue. It turns that Terabinfine is a  is very potent CYP2D6 inhibitor. CYP2D6 is one of the most important detox enzymes in the liver. It is responsible for the clearance of 20% of clinical drugs, including opioids (codeine, tramadol), antitumor drugs (tamoxifen), antidepressants (fluoxetine), and antipsychotics (haloperidol). In addition, this enzyme also present in the brain and metabolizes dopamine and serotonin in the brain. You know the stuff the keeps you and track and makes you feel happy. The half-life of the drug in body tissues is 400 hours or 16 days. That means depending on the level of saturation at the end of 30 day dosing only 1/2 of it has been eliminated from the body tissues. Another 16 days shall have to pass to be down to 1/4. And another 16 days to be down to 1/8. So, I can see how there can be longer term side-effects. I'm thinking of taking G Biloba or Valerian root because that shows to increase CYP2D6. But, of course, I also feel I want to be conservative about taking anything that screws up the natural homeostasis of the body. Right now, I am 15 days into my recovery. I battle the bitter/metal/salty BMS (bull manure scum) taste by always having abit popcorn in my mouth like chewing tobacco.  

    • Posted

      More information on WHY this could be happening?  

      Alteration in the sense of taste may be due various central (involvement of the "Taste area" in the temporal lobe) or peripheral (changes in the receptor cell [taste buds] function as in xerostomia or damage to the gustatory afferents in the facial or the hypoglossal nerve, as a complication of tonsillectomy, uvulopalatopharyngoplasty or Bell's palsy) causes. [1] Drugs account for the most common cause of dysgeusia and a few culprit drugs include clopidogrel, enalapril, interferon, hydroxychloroquine and doxorubicin. Among the antimicrobials, terbinafine-induced ageusia has been well documented. The exact mechanism for this side-effect of terbinafine remains unknown but Richard and Boris hypothesize that terbinafine alters the cell structure/function of taste-related neurons by way of inhibition of the cholesterol synthesis pathway. [2] Old age (more than 55 years) and a low body mass index (BMI) (< 21 kg/m 2 wink are considered as predisposing factors with a mean latent period between first intake of terbinafine and taste loss of 35 days. [3] Our patient was 62 years old with a BMI of 25 kg/m 2 and had developed taste loss within 40 days of starting terbinafine. Most reported cases had a reversible loss of taste and most patients regain complete function within 4 months of stopping the drug. However, Bong et al. reported a patient failing to regain taste function even 3 years after discontinuation of the drug. [4] Bitter taste is the first to be affected and is the last to come back while sweet goes later and is the first to come back. A possible explanation could be that fewer fibers carry bitter taste signals while a larger number of fibers carry the sweet sensation signals. Our patient has now had a complete recovery of his sweet taste function and 50% of the sour and salty taste functions. The bitter taste function is still absent.

    • Posted

      I am very impressed with your research. Where did you find this?

      Does anyone know how we can get this drug off the market? 

      I am thinking that maybe the  "2.25%" of us with loss of taste may be a low number. I was told by someone who used to work in pharmaceuticals that it is important to report side effects to the FDA.

      I reported both to the manufacturer and the FDA. My GP prescribed the drug to me then it turns out my dermatologist hasn't used the drug in 10 years. Wish  I had gone to her first.

      By the way, my dentist suggested B12 for loss of taste. 

    • Posted

      Thanks man. Keep your head up. I’m getting my tastes back and feeling better overall, but I’m still feeling some ups and downs and the taste situation is still not 100%. Weird that the study you cited says that bitter came back latter while sweet was the first to come back. It’s the opposite for me; no sweet/sugary taste at all while other flavors are coming back but muted and slightly off. I’ve been off it since June 3 (5 weeks). It looks like most other people said it took 8-16 weeks to totally get their taste back, so I’ve got my fingers crossed that I’ll totally get my taste back at 8 weeks or sooner. Thanks for the info. I gotta say that I was feeling really down so that information makes a lot of sense. Thinking of my kids and knowing that my situation was temporarily caused by medicine is what kept me going, but dang man, even then, even knowing those things, life was still really miserable. 
    • Posted

      Yes, 2.25-2.8% of total demographic taking the drug. Those that are 50 and older have 12 times increased risk of the side effect. So, I bet that if you only look at people 50 and above the side-effect percentage is way higher.
    • Posted

      I am curious where you got your information, it is so thorough.  Thanks for the info.

      I hope all of you get your taste back soon.

    • Posted

      More information on the brain.....

      Brain cholesterol is considered to be a distinct pool from body cholesterol. Unlike cholesterol in other organs, there is only minute exchange of cholesterol towards other organs (2). The brain does not respond to many control mechanisms operative in maintaining cholesterol homeostasis in the whole organism. The half-life of brain cholesterol in the adult organism is between 6 months and 5 years [25, 26], the half-life of plasma cholesterol, in contrast, is only a few days [27].The majority of brain cholesterol accumulates between the perinatal period and adolescence when neurons are encircled by specialized plasma membranes termed myelin. After myelination, the metabolism of cholesterol in the adult brain is characterized by a very low turnover and minimal losses [23]. However, recent results indicate that both cholesterol synthesis and degradation are active in the adult brain as well and that alteration in these mechanisms profoundly influences higher-order brain functions [24]. (Yea, Like sense of taste!!)

      Several levels of evidence indicate a distinct metabolism of CNS cholesterol. The brain does not respond to many control mechanisms operative in maintaining cholesterol homeostasis in the whole organism. The half-life of brain cholesterol in the adult organism is between 6 months and 5 years [25, 26], the half-life of plasma cholesterol, in contrast, is only a few days [27]. Recent data indicate that besides being an important constituent of the brain cell membranes, cholesterol as well as the receptors for cholesterol-containing molecules are pivotal signaling molecules for brain morphology

      Sufficient availability of cholesterol is necessary for normal neuronal function and morphology, and both a lack and surplus of cholesterol impair these features [41, 42]. Cholesterol in neurons can be synthesized by neurons themselves [43, 44] and can also be taken up from other cells within the CNS, namely, from oligodendrocytes [45]. Oligodendrocytes have a central role in cholesterol synthesis in the CNS. On the contrary, the role of neurons and glial cells in cholesterol biosynthesis is still poorly understood [46]. Data indicate that neurons (in particular regions of the brain and/or under certain conditions) synthesize and take up cholesterol from circumjacent oligodendrocytes. Enzymes such as Hmgcr and 7-dehydrocholesterol reductase (Dhcr7; EC 1.3.1.21) are expressed with high transcript levels in cortical, cholinergic, and hippocampal neurons [47]. The expression of cholesterol-synthesizing enzymes as well as sterol-sensing factors, intracellular transporters, cholesterol shuttle proteins, and lipoprotein receptors is different within regions of the brain [13, 48]. Consequently, different regions of the brain differ markedly in their cholesterol content [49]. 

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