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question about Yellow Nail Syndrome

Posted , 3 users are following.

Suzyk
Suzyk

I have been diagnosed with yellow nail syndrome (I've posted before)... anyway, my yellow nails also have also started turning black.  A couple have fallen off and they are growing back in strangely.   Any ideas what direction I should go in ?  my GP is perplexed.. and the last Dermotolgist I saw said it was Lupus (no other Dr agreed)..   I'm getting discouraged.   and yes, I know the photos are gross.. which is how this is making me feel,,,,

1 like, 17 replies

17 Replies

  • Guest
    Guest Suzyk

    Posted

    Hi Suzy, I also have YNS. My dermatologist told me to get a prescription for Itraconozole when my nails turn black. I take 2 x 2 each day for 14 days, then 2 weeks free and then another 2x2 for nother 14 days. This seems to do the trick and the nails do get back to their normal yellow colour.  I have gotten used to never having all 10 nails - there are always 2-3 missing. 
    • Suzyk
      Suzyk Guest

      Posted

      thank you Katie.  My Dr is so unfamiliar with this syndrome and doesn;t do much research for me... this is helpful.

       

  • Guest
    Guest Suzyk

    Posted

    TBH Suzy. I'm afraid the only person who had any interest in my case was the dermatologist who diagnosed the YNS. She was delighted as I was the first case she had seen 'in real life'. She had the medics take photos of my hands and feet to show the yellow colour, got support stockings for my lymphoedema, prescribed Itraconozole to clear up the black edges of the nails and told me the importance of having antibiotics on hand for sinus infections to stop it getting to my lungs.

    On the other hand, the lung doctor doesn't want to know - he just gives me a CT scan occasionally to monitor the bronchiectasis (usually at my request). My GP is great and does my scripts for antibiotics and Itraconozole when I ask for them.

     

    • Suzyk
      Suzyk Guest

      Posted

      My GP has been good - but perplexed and frustrated.  he has been good about trying to find people to help me.  But no one seems to know the answers and I am tired of all the tests.  My cough and the secretion have been with me for 2 years now.   Same with yellow nails.   At first no one wanted to think everything was connected. 

      I have decided not to persue anything further with the cough/secretion until it gets worse.   The black nails are just plain gross and I am tired of peoples comments.  Funny how when you say it's YNS people think its something trivial.   If only they knew . . .

       

    • 101dalmation
      101dalmation Suzyk

      Posted

      Where are you Suzy? im in the uk. my doctors didnt know much about it when i first got yns. it was a dermatoligist that diagnosed mine and my doctors did some research on it. so they could prescribe me with medication to help me through it. If your doctor could send you to a dermatoligist who will be more informed about this rare disorder. i know its painful to go through as i have suffered now for 8years. Depending on how lon you have had this too will depend on what is to come in the future for you. i.e. coughung, chest infections. acid reflux, just a few to mention. we do have a page on facebook which is a closed and private page if you wish to join us on there your more than welcome. just look for "Yellow Nail Syndrome" Loiuse in new zealand is the lady who opened it so people could join in privacy.
    • Suzyk
      Suzyk 101dalmation

      Posted

      I've had for 2 years now... been to numerous doctors.. the dermatoligist I went to said it was lupus...(multiple blood tests are inconclusive)..my GP started studying, talking to other Drs. and then stumbled on yellow nail syndrome.  I have had the coughing, infections, a secretion that is playing havioc with all sorts of things... It isn't fun.. I tried to find you all on facebook when the group was starting, but couldn't find you!   Oh, I am in Chesapeake, VA, USA
    • 101dalmation
      101dalmation Guest

      Posted

      Hi Katie, my doctors are the same here, if I ask for antibiotics they prescribe them for me, but I only go to them if the coughing is horrendous. They have done a lot of research on my condition, and are treating me really well. I can't complain about them at all. I always said to my doctors I was abnormal, joking about with them, then it was proved I was abnormal. 8 years with this is a long time and still it continues. Did you have any kind of operation before your yns started to appear. As I did. I had the hysterectomy operation and within two months my nails changed colour, then it took two years and 11 different doctors to find out what it was. 

      Debbie.

    • Guest
      Guest 101dalmation

      Posted

      no surgery Debbie - apart from spinal surgery but that was 11 years before the YNS. I did have Meniere's disease from 1985.
    • 101dalmation
      101dalmation Guest

      Posted

      That's a relief to me then, all this time Ive been thinking it was caused through my operation prior to getting yes. 

      Have you tried looking Suzy up on Facebook, I've tried a few times but nothing comes up. 

      Debbie. 

  • 101dalmation
    101dalmation Suzyk

    Posted

    Hi Suzi so sorry your suffering I know it's very painful, took me 2 years to find out what it was. The doctors over here in the uk are gaining more knoladge about it now. I was a Guinness pig at first but now we are getting on top of it. I will be on medication for the rest of my life due to the condition, but I'm coping with that. I do get a lot of acid reflux with mine which is very uncomfortable. I had a lung operation in Dec 2014  because the fluid from the yellow nail syndrome found its way in to the left lung, the fluid flows through our blood stream and can end up anywhere. Though my nails never went black in colour. They are a yellow green colour and i lose both big toe nails both thumb nails and the forth finger nail on right hand. The other ladies I have found on here to suffer the same nails. 

    If you go on Facebook type in "yellow nail syndrome" there is a private page  and an open page. If you still can't find us let me know your Facebook I'd and I'll find you and invite you. 

    Hope this helps and sorry again your suffering like us. 

    Debbie. 

    • Suzyk
      Suzyk 101dalmation

      Posted

      I couldn't find you... my facebook name is Susan Labusohr Keane...
    • Suzyk
      Suzyk

      Posted

      I'm discouraged... I had a little glimmer of hope - a drug to help with my nails turning black..my Dr. ordered it and my insurance denied it... I know it wasn't much, but the black nails seem to cause more comments than the yellow ones....
    • 101dalmation
      101dalmation Suzyk

      Posted

      I'll look you up on Facebook see if I can find you and add you as a friend on there then direct you to our page, will be easier that way. But I'm just waiting for hubby to get home from work to have our tea. Will on there in about an hour. 

      Debbie jones. 

    • 101dalmation
      101dalmation Suzyk

      Posted

      I understand what your going through, and I know it's hard for people to understand because of the rare des ease we have. Some people can be cruel and it's upsetting. If you can paint them will nail varnish try that, if not I had mine removed permanently. Still have two nails to be removed next year. Don't feel like your on your own, cause your not we are all here to help you. Vitamin E iu capsules are good for the nails I was on 1000 units a day. But speak to your doctor first. I'll speak again later, have to go for now. 

      Debbie jones. 

    • 101dalmation
      101dalmation Suzyk

      Posted

      I'm on Facebook now I've typed your name in but nothing's coming up on there in your name. 
    • Suzyk
      Suzyk 101dalmation

      Posted

      That's strange.  When I type in Yellow Nail Syndrome all I get is a enclopedia page...
    • 101dalmation
      101dalmation Suzyk

      Posted

      This is harder than we've had in the past. Try typing it as I display it. 

      "Yellow nail syndrome" 

      try that with the ash tabs if you find the private group just send request to be added and we will see you on there. Good luck. 

      Debbie

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