18 months ago I had a sinus infection with a cough. The cough never went away. Two months later I noticed my nail changing and one fell off. Everyone focused on the cough.. Even though I knew the two went together . I've also had a thick clear mucus discharge. I have seen several specialists with no cure or answers.. I've had tests, a Broncos copy.. Cat scans, another sinus infection, and bronchial pneumonia. Finally my gap diagnosed me with yellow nail syndrome (I,veg had almost all finger nails fall out... Aroundd my toes there is a hardening of the skin around them... I've had fatigue, and swelling of my ankles. Reading all of this you have written sure sounds like what I have been dealing with... Makes me not think I'm crazy. My question is what kind of dr do I see? What can I do to help myself? Does the cough and mucous ever go away?
YNS is an immune system disease. approx 3 years ago, I went to the doctors with constant nail bed infections, then wee while later had a thick white/cream mucus from my cough, classic yellow/black nails some lifting some thick some detaching, chest xray showed a shadow on my lungs, Brocial infections, finally diagnosed by immune specialist 2 years ago with YNS. later i had pain and swelling in my legs when trying to exercise legs felt heavy like lead. constant antibiotics, for infections on my fingers. I had a battle getting help begged nail technicians to attend to my nails none would touch them eventually i signed a disclaimer with a podiatrist so she could attend to them, THEN. i went to natural path. started large dose of fish oil 6 per day. vit D, Magnesium, gut health slippery elm. and not long after started Acitretin (this drug causes birth defects but i am past child bearing age, so ok for me) 10mg daily. regular visits to the podiatrist who does my fingers, I am nearly cured!. now double the dose 20 mg acitretin, no more leg pain and my hands are looking nearly normal, nails are white now..Acetretin is a drug for psoriasis, The skin specialist is delighted he has solved the problem and is taking the information to the world specialists. I am so grateful to finally have relief. good luck, hope my experience can help you.
Yes I agree with Lois, I think somewhere in your family history there must be someone with Psoriasis, the nail destruction, onycholysis is typical of this, I have similar nail problems, mine are certainly from Paoriatic arthritis. Your one the right medication and good luck!
I forgot to mention that in my early forties i was a trim, energetic, active person and i was working in a very stressful occupation. on top of that My mother died and I had 4 teenage daughters. Menopause, stress levels etc..got me first with Hasimotos which is immune system attacking the thyroid gland, gained 15kgs in weight, going downhill which only contributed to the Stress. I was Copeing with a bottle of red wine nearly every night, to relax, All this was a major factor prior to me getting YNS, ladies listen to my disaster, I am so glad i am at the end of the tunnel now. if I can help i am happy to give more info.. xx
Hi Guys,
Lois thrilled things are improving for you, you have been through the mill.
Suzy great you have a diagnosis, that has been a struggle for everyone in large because it is so rare. Treatment is symptom based from what I have learned, as it is a syndrome which can effect various systems of the body. So your choice of Dr is based on this. Most important (also the most difficult as I have found) is to find a dr who is actually interested in you as a person, as a patient and in your condition, rare frustrating and odd as it may be. I have found myself educating healthcare professionals on occasion. So educating yourself is vitally important. Google Scholar is helpful.
Start with the basics, sorry I really in no way mean to be condesending but speak from a combination of personal experience and a background in healthcare. I developed YNS at a very stressful period in my life after a car accident when definately my immune system was compromised. Look after yourself. I know if your nails are sore even simple tasks are difficult. Easiest to find on line but absolute life savers for me were gel lined finger stalls. They really protect your sore nails/nailbeds and make simple things possible again. Using disposable gloves over them made bathing and hairwashing pleasurable again. Even food prep was possible again.
Look at your diet, you may need supplements having been ill for some time. Lois mentioned a Naturopath which worked for her. I have an independant local health food store run by fab knowledgable staff which works for me. Eat well, good nutritious food. Sleep is also important. You mention fatigue, it is a symptom of the syndrome. Listen to your body. Pace yourself. Look at ways of relaxation which appeal to you. We are all unique with unique sets of circumstances. Over time I have found mindfulness helpful.
You mentioned dry skin, I have found coconut oil great. I apply it once or twice a day and the difference is unbelievable. It also has antifungal and antimicrobial properties.
YNS is a syndrome which can only be managed, there is no cure unfortunately. That said I am doing ok. No the cough and mucus are there but much less so. I do attend a respiratory specialist as necessary. When my nails/skin cause problems I attend a dermatologist who was the Dr who diagnosed the YNS first day. I see a podiatrist 2-3 times a year, while my fingernails grew back normally my big toe nails not so and need expert attention.
I am not sure i have been any help.
Thank you for sharing. The past 18 months have been frustrating, no answers, no solutions. I admit I feel lost in knowing where to turn. Reading all of your discussions has really helped. I need advise from people who know, who are experiencing the same things I am, I can benefit from all you have been through. I am open to any help or direction you all can give me... So thank you for responding!
helen, Can you tell me please, Are you taking any medications or has the disease just run its course for you? I am wondering if i will eventually be able to get off the drugs one day. Your immune system must be sorting itself out. thats great news. and what vitamines etc. are you taking thanks Lois
OK have you got Sjogren's Syndrome? Get your GP to check your bloods for ANA, if so then Check for SSA and SSB markers! Are your eyes dry, sore and itchy or your mouth sore with ulcers? If those plus stress you might have an autoimmune problem!
Ditto all the above - I have had YNS (rhinitis, sinusitis, Bronchiectasis and lymphoedema) since 2009, Hypothyroidism since 2001. Sleep Apnoea since 2012 and just been diagnosed with dry eyes. I am awaiting a CT scan for any advance in the Bronchiectasis and both my thumb nails and right forfinger nail are almost regrown after they detached last year. I never have a full set of nails and true to form the left forefinger is starting to detcah now. I had my big toenails removed a few years ago after several infections under the nail bed as it was lifting.
Suzy - you sound typical of us all and all I can advise is to read all the comments on here and try the suggestions out for yourself to see what works for you. There is no cure, you just need to deal with the symptoms and take preventative measures where possible. I keep a two week course of antibiotics at home and take them at the first sign of my sinuses or chest becoming infected. I add a few drops of I odine (Lugol's solution) to a glass of drinking water each say and take 800-1000 my of Vitamin E in capsule form each day. I also take Selenium, Vitamin C, D and A and Omega 3-6-9 and Co-enzyme Q10 to keep my cholesterol down.
Good Luck with all your chosen methods of treatment.
Katie
Hi Guys,
Yes Katie like you I keep on my respiratory specialist's advice, antibiotics to hand to take at the first sign of a chest infection but thankfully have not needed them now for 2-3 years. Makes such a change from 5-6 times a year. Sorry things are difficult for you at the moment.
Lois I can't say specifically it was any one thing, I think it was a combination of many things and probably luck at the end of the day which has really helped. I read everything I could lay my hands on to do with YSN, what had been used in treatments and more importantly what had not prooved successful. That said information is scarce as it is a rare syndrome which does not generate much interest. You are really lucky to have a good dr. and hopefully once symptoms are under control you may be able to come off the meds.
Building up my immune system I would say was no 1. Looking at life balance, diet, ensuring adequate sleep and quality relaxation were paramount. None of this happened overnight with many false starts along the way.We both recognised stress was a big factor in our lives at the time when symptoms developed and I think adressing this as far as possible has really helped.
Diet, one thing I did learn is that dairy and citrus (both of which I love of course) contribute to mucus formation within the body. A cranial osteopath I attended pointed this out to me. Cutting them out definately helped in mucus reduction and I now thoroughly enjoy a really good cheese as a treat every now and again. I go through phases with supplements and now only take under advice and tend to reserve for times of special need. Good quality ones tend to be expensive so I try to concentrate on good quality food instead. I also got a present of a gear juicer, one of the ones which juices without heating thus preserving the vitamins etc. so went through a major phase of fruit and veg juicing.
Thank you, Lois for your help.. Mine seems to be a result of chronic sinusitis. my frustration is I still have a bad cough and lots of mucous, on top of the nail thing.....it's been 18 months since I have slept though the night because of the cough. I am exhausyed and now the cough is causing muscle spasms on my right side... I'm frustrated.
I haven't heard of Sjogren's syndrome? Lupus has been checked several times - positive sometimes, negative others. not unusual for lupus. my DR. has a tendency to not believe it is lupus related.
thank you, Katie. I have seen 5 specialists this past year - and no one has come to much of a dertemination... other than persistent cough with alot of mucous. I did test positive for mycrobacterium gordane.. a non-contagious form of TB.. but the Infectious disease DR doesn't think it is the reason for my problems, so it has been determined not to treat it...
can i just say that although having my fingernails fall off (and grow back in the same way) - and look awful, which can be embarrasing... that is the least of my problems. this cough is unnerving, exhausting, annoying co-workers, keeping me and my husband awake...
i really don't seem to know where to start, I will say it is depressing me. r
does this disease "run it course?" will it go away on it's own?
my mother had exema - but no one I know of has had psoriasis...
suzyk, no one in my family has had exema, I think exema is a auto-immune condition, but i definately have auto- immune conditions running rife throughout my family, katie, when i had the shadow on my lungs, the GP told me to make sure i wore wool, she told me off actually, so i went out and bought a few merino, leggings and long sleeve tops, which i wear every day, I make sure i am not cold, make sure i am not sleeping with any moisture, in NZ it is very moist, so we use a dehumidifier, I use natural oils in a dispenser, peppermint, euclayptis, lemon etc, to try to keep my airways clear, our bedding is wool and cotton, I still cough a few times each day bring up a small amount of thick clear phlegm but have got the all clear from the lung specialist, told me its in my broncals, yns has had me in agony many days, the pain in my fingers hard to bear, My legs swollen and it was hard to move, but now this Neogitisan, Acetretin drug is giving me amazing relief. Of course if the pain is gone you feel better and the stress is less too, Maybe ask your docs if you can try it for a short term it only took a few weeks and i had improvement. cheers.
Hi everyone, Sorry to hear your suffering from the symptoms of YNS. I still haven't found a solution to my congestion and mucous production, I find it gets worse when I am under stress and not using my nebulizer regularly. Unfortunately I cannot take the drug Acetretin as I am only 27 and hope to have kids one day. Is anyone else in this age group or have any experience being pregnant while having YNS? My doctor (I see an Internal Medicine Doctor specialized in Respiratory disorders) tells me they won't know if I'll have any complications with pregnancy until I try to get pregnant which is a little daunting. I have yet to find anything that will help my nails but I continue to use coconut oil to try and help with the dryness. Only one toe nail has fallen off so far, so I think I am lucky holding on to a few of my fingernails that are hanging on by a thread. Glad everyone is still discussing things on this page, it's nice to relate to others with the same problems Take care
It's just sunk in about the auto-immune link and I realised that my Mum developed late-onset Type 1 diabetes which is auto-immune. Her two sisters also developed it but at a later age than Mum. The good news is that it appears that the rest of my family seem OK..
Hi Suzy,
Something about the way you describe your cough.... have you ever been checked for asthma ? I think it was the year before my YNS developed I had an asthmatic episode, coughing ++ esp at night, turned out to be a reaction to cleaning products. Have since become sensitive to most regular cleaning products including shampoos, shower gels etc.etc.etc. Air freshners are my biggest nightmare as are scented candles. This year hayfever has become a problem and I have just had my second asthmatic episode this week, old grass just cut next door. I do use preventative inhaler regularly but not enough this week. I am booked for full allergy screening in Sept. I had not realised but asthma is something we can develop at anystage of our lives. The cough from YNS should not be disturbing you to that degree if there is not infection or something like oedema or a pleural effusion present. It is not a curable syndrome I am afraid Suzy, but great we have found support from each other here. Take care.