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Taste loss ongoing with terbinafine

Posted , 10 users are following.

millie-rose
millie-rose

Hi I am female 50 years old and 7stone 12lbs.  I took terbinafine with no problems for 4 weeks but then my taste distorted.  I stopped this drug 5 weeks ago and I still cannot taste much apart from coffee and celery!  I am becoming depressed and now have stomach pain due to me not eating - I have no appetite and am losing weight.  I guess if anyone can reassure me please it would help my state of mind.  My dentist said, "Well doesn't stop you eating"  and doc has no answers.  I have never "lived to eat" and have not got a sweet tooth but I cannot rid my mouth of the foul taste and just long to taste something (anything) sweet.  Thank you for reading.

3 likes, 23 replies

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  • mirving
    mirving millie-rose

    Posted

    Hi, i really feel for you and of you read my pages you will see my diary. It took me about 8 weeks before it all come back, starting with curry and strong flavours, sweet , sugar was last to return. It got me so low, depressed too, keep your chin up. Doctors don't seem to know this and the impact of having no taste is far worse than anyone can imagine, hope its all back soon, keep me posted,

    Michael

    • millie-rose
      millie-rose mirving

      Posted

      Hello Michael, thanks for your response. I will look at your pages.  It seems a long road!  I did find an article on the British Dental Journal site but it really doesn't seem common knowledge amongst dentists or doctors.  I do feel guilty for 'complaining' because my brother is on chemotherapy drugs and his taste can alter for weeks at a time so I can't really turn to the family.  It is quite debilitating though isn't it, and my sense of smell hasn't changed so quite odd that you can smell what you are eating but everything tastes foul!  I can taste the first mouthful sometimes.  Yes I will keep you posted but glad to hear you are recovered.
    • mirving
      mirving millie-rose

      Posted

      Its all very odd, I am up North in Newcastle and asked several practices including my cousin who is a gp so know your feeling on family. I was smelling great too, crisps, all sorts were like card board, drinks were just as bad, soft and alcohol. All a waste of time, but it does get better, eventually, do take care pet, all will be right eventually, they need more warnings on this drug, x
    • millie-rose
      millie-rose mirving

      Posted

      I'm up North too, not quite as far up as you and over t'other side!  thank you so much for your encouraging replies, I might sleep easier tonight. wink
  • andrew1672
    andrew1672 millie-rose

    Posted

    Do not despair. Many others have gone through this and it will get better. I just completed my ninth week after stopping to Terbinafine & I have about 50% to 60% of my taste back. If you read some of the other postings you will see that sugar or sweets is the last to come back. I don't have it yet and the bad taste in my mouth is not as bad as it was. It is just a very slow process and can take three or four months for it to completely return. Try to find Jonathan's postings on this subject. He was very encouraging to me. Two items that tasted fairly good were orange Gatorade & Lays baked potato chips. Don't know if you can get them there. I am in the US. Don't worry. Hang in there.
    • millie-rose
      millie-rose andrew1672

      Posted

      Hi Andrew. Thanks for your reply, Poor you in your 9th week though.  I have been buying all sorts of food to try just in case I can taste something but so far not much joy.  We do have Lucozade which I guess is close to your Gatorade.  I'm glad you are sounding very positive and yes I will look at the posts.  
    • nurslaura45
      nurslaura45 andrew1672

      Posted

      i see this post is from 3 years ago, but still helpful, yet scary at the same time, i am from u.s., but this forum seems to be the best i have found, i am about 2 weeks into loss of taste, it happened rt after i stopped using the terbinafine, i can taste sweet more than any flavor actually tho, when most have said they lost that more than any flavor, regardless it is miserable..how long do u think it will last and what can i do to help it recover, what ever it is that is damaged..sad

       

  • polly52230
    polly52230 millie-rose

    Posted

    Hi, I'm sorry to hear of your taste loss and hope it comes back soon. I took terbinafine for 3 weeks and stopped about 6 weeks ago due to developing an allergic reaction to it with hives all over my body. Whilst I was taking it and ever since I have also developed a tremor in my jaw, it is very slight but noticeable to me, and others if I put my teeth together. My legs also feel like they are buzzing, ie the nerves in them. It's pretty irritating. I think it is due to the medicine but my doctor does not. Does anyone else have anything similar ie twitching nerves / tremors. Many thanks.
    • millie-rose
      millie-rose polly52230

      Posted

      Hi I also got eye twitch, something I never had previously and I got very restless legs.  I keep having to move them and they are awful at night though this has improved now. However this could have been caused by extreme tiredness with not eating properly and feeling depressed. I hope your symptoms improve but the medical profession don't appear to know of the many side effects of this medication, 
  • laura05231
    laura05231 millie-rose

    Posted

    Hi,

    I stopped taking Terbinafine on Sept 14 after taking it for 30 days. I lost my total sense of taste. It's been two weeks and it's very depressing! My doctor said that it's a unique case. We are ruling out other things that it could be, but more than likely it is from Terbinafine. I've been eating noodles and drinking Ensure shakes. I make myself eat even though I don't want too. I hope you feel better soon!

    • andrew1672
      andrew1672 laura05231

      Posted

      It may take three or four months for your total taste to return. I stopped taking Terbinafine just over three months ago and have about 90% of my taste. It will return little by little and sweet will be the last taste that returns. Food may start tasting bad before it gets better but have patience it will return. 

      Andrew

    • laura05231
      laura05231 andrew1672

      Posted

      Thanks Andrew! How long did it take for you to taste anything?
    • andrew1672
      andrew1672 laura05231

      Posted

      At first for me everything that I ate was just texture with no taste. After about a week and a half or two things started tasting different but not good. After about six weeks I started getting faint tastes of some foods. At that point I thought everything would come back right away but that did not happen. It was very slow and sometimes it seemed to regress but I am now into my 13th week and things are almost normal. Yours may go faster because I am older (66) & have a low BMI. It seems like younger people are restored quicker. There are other encouraging replies on this topic

      here. My wife and I prayed for you last night & it will just take a little time and patience. I wish you the best. 

    • laura05231
      laura05231 andrew1672

      Posted

      Thanks so much for the prayers!! I do have faith that this will pass. It's

      been two weeks and not much has changed. I'm trying to stay positive,

      but it is so scary! The prayers mean so much to me! Thank you!

    • mirving
      mirving laura05231

      Posted

      Do take care, its awful and very depressing, It was about 8 weeks for me to start and taste savoury, spice and lastly sweet stuff. I dont think anyone understands how difficult it is to eat and drink when everything tastes of nothing. take care, hope its all back soon. smile
    • laura05231
      laura05231 mirving

      Posted

      Thanks Mirving! I don't know why they have this medication out. Getting

      some blood work done tomorrow to rule other things out. Horrible experience!

    • mirving
      mirving laura05231

      Posted

      Am sure your bloods will be fine, its this awful drug! They need to flag this not so rare side effect rather than a little note on a price of paper in small print,
    • millie-rose
      millie-rose laura05231

      Posted

      Hi All

      My taste was improvtng after about 6 weeks but then it plateaued - I am now on my 9th week and things are bearable, but still have no enjoyment of sweet things and chocolate is foul!  It is ironic that those with a low BMI seem to suffer because we really don't need the weight loss!  I am to go for a gastroscopy because of pains in my stomach too.  I have to remind myself that I was healthy before I took this drug and Laura your case is certainly not unique as your doctor says.  My blood is all okay, however I did become very depressed.  I found that bland things actually tasted better, eg brown rice (i make rice and peas with onions and nutmeg for a bit of kick.  Salad, but not tomatoes, yuk!, I could taste fish and new potatoes.  I am vegetarian but sorry for the fish but I was desperate, Good luck and you are just starting out, you will have better days and then not so better days.  Btw have any of us been asked to report our side effects to the drug company or to any pharmacy?  I am going to email them.

    • laura05231
      laura05231 millie-rose

      Posted

      Thanks Millie! I did report this drug to the FDA today. I read another post

      that milk thistle caplets drops help? I'm desperate too! Macaroni, fish,

      ramen noodles are bearable. Please keep me updated! Thanks!

    • john_34447
      john_34447 millie-rose

      Posted

      Hi MIllie-rose,

      I flagged it up on the NHS Yellow card site https://yellowcard.mhra.gov.uk/

      I think it's a way of building snapshots of these sorts of instances. The more people who report it the more it's highlighted.

      I have had this damned taste loss for just few days and it's driving me loopy! The thought that it could take at least another couple of months makes me as mad as hell. I think the manufacturers need taking to task over this so-called minimal side-effect. Especially as in the patient leaflet it quotes that taste loss where it occurs disappears when one stops taking the tablets - it doesn't qualify the time period. Further, it says, "less than 1 person in 10,000 have reported the taste 'disturbance' lasts for some time"  - again an non-specific time measurement. 

      Hope this helps,

      John.

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