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Yellow Nail Syndrome

My father has been suffering with the effects of Yellow Nail Syndrom for several years now. He's had pleurodesis on both lungs and is currently suffering with very profound lower extremity edema. Does anybody know of any way to find a physician in the Carolinas who have experience dealing with this disorder? His local physicians are stumped.
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Avatar universal
I developed YNS in January 2010 after the implant of a titanium post in some dental work.  My symptoms were chronic sinusitis followed by all the nail problems.  More recently I have experienced edema of the lower legs and ankles.  I had no help from ENT's or dermatoligists even after enduring sinus surgery.  I eventually self diagnosed after contacting Dr. Fredrik Berglund of Sweden.  I sent him nail samples which tested positive for titanium.  The last of metal in my dental work was removed in late January this year.  I have yet to see any dramatic improvement in my symptoms.  I see from these posts that vitamin E may help with the nails, but I'm seeking a way to purge the titanium ions from my body.  Any advice you could provide would be be greatly appreciated.  I wish you all well in dealing with this insidious malady.
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Katie Im in Uk and am currently battling to get help for what I believe is YNS. 3 yrs ago I developed hay fever like symptoms, and after a persistant cough. After anthistamines, and antibiotics didnt clear it up was referred to lung dept at hospital. Had scans and was told it was all due to my sinus inflammation and continuous nasal drip. Throughout this time I kept mentioning to my GP that my nails have turned yellow and was dismissed with "its due to underlying causes? What though was my reply. I dont know was the answer and it was left at that with ongoing visits for antibiotics (dont work) water tablets for my ankles and lower legs (dont work)  and my nails still yellow. I visited a local pharmacy and asked what I could do. He asked lots of questions and said he did not think my nails yellowing were due to a fungal infection and said he would research all my symptoms and see if he could come up with anything. He believes it is YNS I have some literature to give to my rather disinterested GP. I read about the titanium thing. I have titanium screws in my ankle from a long time ago and wondered if I could have absorbed it ? I battle on for a confirmed diagnosis and feel quite alone.
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i live in India and had the good fortune of getting aboout 70% cured in the sense that no more peural effusion and nails are improving. Lymphodema in the legs persist but is not as severe . I t was by a great initaitive by my pulmonologist and thoracic surgeon who tried ligation of lymph vessles which is  tricky but I am ok and thought of sharing here as I got a lot of support at this community
Avatar universal
Here is a good article
http://www.pneumonologia.gr/articlefiles/YNS.pdf
Hope your md appointment went OK.
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Avatar universal
Yes , even my Md's think" it "should be renamed....
I consider my Pulmenologist my main Md. , although he knows very little about
lymphedema . It's really tough to find md's who even knows about YNS.
Where are you located ?
It is not considered a auto immune condition .
Have you lost your cuticles ? Secondary infections of nail and nailed happens
really Ez with YNS. I did  topical antibiotics on my nails to get it under control.
Now I always where gloves when showering or dealing with water ( a pain )
My nails are still yellow but at least not infected.
Did your symptoms come on all of a sudden ?
I'm surprised your MD said that about your nails. I've been told that regardless of YNS, the lungs and nails are very tied together but they are not quite sure why.
I have some good articles , I'll find and post.
Take care
Joann
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Avatar universal
I have been struggling to find a diagnosis for almost 2 years - I have seen 4 specialist with very little success.  They all admit I have a chronic cough, a thick gel-like mucous, problems breathing, extreme fatigue,nodules in my lungs and bronchial tubes (with a hardening of the bronchial tubes), swelling of hands and feet.
ALL have said my yellow, brown nails and nails falling off were NOT related to my lungs/cough.   To say I have been depressed is an understatement.

Then my GP wandered across yellow nail syndrome and felt that is what it was.  He suggested I google it and read up on it... I see him today with some of what I have read - suggestions made, etc.  I am glad for a diagnosis..but frustrated by lack of solution to the problem.  and lack of hope of improving.  I am asking him to remove my thumb nail today - it's brown,gold, green and all around it looks infected (all my other nails are yellow... most have fallen off and are growing back in).

You all made me feel better -  it must be true that misery loves company.  I am just so thankful that there is an explanation and that the symptoms all go together.   I do have a couple of questions:  what type of Dr should I go to?  is this an autoimmune disease?  where do I find updated info on this?  does anyone other than me wish it had another name?  when I have people ask me about it they think it is only related to nails and think it is no big deal... if only they knew,

Susan
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Avatar universal
I am Joann, a 56 years old woman, diagnosed with YNS 8 years ago. Fortunate for me , I was connected with  a very attentive Md. early ( Pulmonologist  Joe Levitt at Stanford hospital) who recognized my symptoms and consequently I visited Dr. Maldenado at Mayo clinic ( he’s no longer there by the way ). My diagnosis was confirmed by him . Since then my condition has deteriorated multitudes . My lymphedema is torso and below ( worked its way up from calfs and below) and my left arm ( figure that ?!?!).I have bilateral effusions with pleurox catheter on one side ( soon to be both ). My sinuses where terrible early on , got better after a few years and are now worse again . I have bronchiectasis  and also " chemosis of conjuctiva “( whites of my eye’s are swollen , Painful ! ) And of course  yellow nails , detached , malformed  on hands and toes , no cuticles . Very tired... probably due to fighting "this" as well as having very low protein levels .
I have been lucky enough to have been seen by some of the best specialist in their fields.( Stanford Hospital, Mayo clinic., NIH, Seattle Swedish Hospital and Penn state university  ) Answers seem to be the same …treat symptoms as well as can be done ( lymphedema is the most challenging for me ). No root cause of condition have been found, just effects of it .So how do you really treat it ?
I would like to shed some light on this “ mystery debilitating  condition”.( I too feel that there has to be many more people with condition than actually publicized ) Since there are a small group of “ us” on this chat room why not start here.
I would like to create a spread sheet with all my history , symptoms , personal habits and exposures  etc. . You would be able to " X” where you match me as well as add more if you need.
This would of course not hold up as any official medical research , but I think in some ways we would be at an advantage not having to meet with their protocol . We could deal with that later if we come up with some results .
What do you think , are you interested ?
All the best to you and
Happy Halloween
Joann in California and Seattle
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Avatar universal
Wow..shions24uk..we pretty much have been going through the exact same thing! I also was diagnosed around the spring of  2014 after a year of searching for answers. It began with bacterial pneumonia and my nails progressively got worse. Finally a doctor was dedicated to finding out what was going on and took one look at my nails and knew it was YNS. They are still unsure if I have bronchiectasis or a variant form of cystic fibrosis but it all seems to come back to YNS. I've been searching for something to make my nails better as it has always been a major concern for me (both cosmetically and their functionality). I've tried vitamin E topical ointment and orally with little to no improvement (although I'm not the best "patient" as I tend to give up easily when u don't see improvement). As for my lungs, I now use a nebulizer with 7% saline to help clear out my passages. I've had a constant productive cough and sinus congestion for over 2 years now. It does help but am still often very fatigued and short of breath. I just got over another stint of bacterial pneumonia (different bug this time..argh) so more antibiotics which I'm sure don't help my nails any. Glad I stumbled upon this forum and I look forward to trying new remedies and talking to others that are suffering from the same disease. I'll also add I'm a 27 year old female so planning for my future and what to expect next is a little scary.  Just searching for some support and any tips from people that can relate :)
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Avatar universal
I was diagnosed with YNS in May 2014.  Started in Oct 2013 with severe coughing,  nails then stopped growing, I have the continuous runny nose, coughing, and wheezing is another issue. My fingers are pretty sore from infections since there are no cuticles to save them from infection. I've had 4 xrays nothing major showed up, loads of different antibiotics,  none have worked. Currently on one a day 20mg clarythromicin for 3 months,  just passed first month, no real improvements.  I don't think I have pleural effusions, but again not sure this would show up on a normal xray? No real lymphodema symptoms showing either? Just totally frustrated by lack of help to get nails sorted, or what has caused this in the first place. Dont sleep well due to sudden coughing fits or having to clear nasal passages.
Just want some help.


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Avatar universal
Please send the YNS article by Dr Helen Mackie.  I always want to keep learning, and trying new things.

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Avatar universal
Hi Ken,

You sound like one very determined man, and I wish you all the best in your quest. Persistence, as they say, is the key.

As far as the Kaloba etc go, the German manufacturers list a two week usage period and the Australian product gives three weeks.  On investigation with the Australian product, it turns out that the time period was only based on the length of time the trial was run.  I used the Kaloba product for around 5 weeks with no side effects. I am now on a herbal mix from a naturopath and it seems to be giving me ongoing gradual improvements, for my sinus and cough.
On a different tack, there is a doctor in Australia who has been treating 6 YNS patients.  She can be found on the web, her name is Dr Helen Mackie, at Hornsby Hospital Sydney, some of the stuff is a bit old, but she did do a presentation paper recently on YNS. I have a copy and so does Katieuk52. If you want copy for your files let me know and I can e-mail it to you.

In Oz, I pay for everything.... but its all over the counter and generally inexpensive meds (no doctors involved) as my symptoms are only mild.



Mike.

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Avatar universal
Regarding the pelargonium sidoides (trade names Kaloba and Umckaloabo), I looked it up in Pubmed, and there are a number of medical studies, and though they all say more research is needed, they mostly agree it may relieve symptoms of acute bronchitis in adults and children, and sinusitis in adults. It is thought it strengthens the immune system, and also has some effect loosening mucous and relieving a cough.

Worth trying. But there can be some side effects: stomach/bowel problems (nausea, vomiting, diarrhea, heartburn).






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Avatar universal
In the US, insurance doesn't usually have an issue approving "typical" treatments. YNS affects nails, respiratory, and lymphatic system (overall, it is considered to be a lymphatic disorder). Doctor visits and typical prescriptions to control symptoms are covered.

It's when those typical treatments don't work that you run into problems. Or when you want to use a drug that isn't specifically indicated for YNS (and really nothing is; YNS is too rare). Or when a doctor suggests a typical treatment that you feel isn't the right treatment for YNS.

For example, if you get pleural effusions, you will see a pulmonologist. I can almost guarantee the suggestion you will get is to have a procedure done that will block the fluid from coming into the lung cavity. There are several procedures that do this, but the most common one is called pleurodesis. This is where the lungs are "glued" to the lining of the lung cavity to prevent fluid from coming in.  

Insurance would pay for this; no problem. But all this procedure is doing is blocking the fluid from entering the pleural cavity. It is not stopping it. That blocked fluid is going to go somewhere else. In theory, the body will deal with this. In reality, it might not.  

I try to avoid surgery whenever possible, so when this procedure was suggested to me (actually, I was being pressured to do it), my response was I wanted to try octreotide to control the fluid. My research had shown it had dramatically helped three other YNS people. And I wanted the once-a-month shot, not the 3xday shots.

Octreotide is dispensed from oncology because pleural effusions are often caused by cancer. I think that's why I've heard that you may need to go to a top facility to get it. And getting the once-a-month shot is really hard because there is no generic for it (and it is very very expensive).  

Octreotide (and the IVIG) didn't give me the dramatic decrease in pleural effusions and lymphedema that a few other YNS people achieved.  But I think they help. Before, I had bilateral pleural effusions. Now, only one side has effusions. Was it the octreotide? Maybe.

When I get the monthly IVIG (which is also very, very expensive), the lymphedema in my one leg (around the kneecap) goes completely away, almost overnight. Unfortunately, it returns, almost overnight. Maybe if I could get it more often than once a month, the results would be better.  

If you want to go beyond typical treatment, medical studies that show a particular treatment helped a YNS person may allow you to try it.

Hopefully, no one in this group will get pleural effusions. But if you do, it's good to know a little about your options. Surgery does not need to be your first option.




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Avatar universal
Hi Ken, Thanks for all the extra info. You are one of the really unlucky people with YNS who have developed this Syndrome to the extremes. I, for one, hope that my condition never gets even close to what you suffer.
I do have the symptoms which you have but to a much lesser degree. In the UK also, we don't have the problem of getting insurance cover for treatment - at the present time.
Hopefully, I will never need any of the medication which ypu mention but it's good of you to list it here along with the supporting literature.
Take care.

Katie
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Avatar universal
For most people YNS is a generally benign condition, but for a few very unlucky people (like myself) it is very serious. I have the full-blown condition (bilateral pleural effusions, ascites (build-up of fluid in the stomach cavities), full-body lymphedema, sinusitis, bronchiectasis, and of course thick yellow nails that often detach. I’m in the US, and am being treated by a top team of doctors associated with the University of Pennsylvania hospital, who are in contact with a major YNS authority at the Mayo clinic. I am very big into research (Pubmed is a great website), so am constantly looking for treatments.

Probably because I am being treated at a top facility, I have been able to try all the cutting-edge treatments that I unearthed during my research. I don’t know if a minor facility could have been as effective, and insurance can be an issue.

YNS is not the same for each person, so a treatment that works for one may not work for another. I’ll list the treatments that have helped some YNS people (particularly for pleural effusions and lymphedema), and give the medical studies that back it up.  Insurance companies want at least two medical studies before they will consider approving cutting-edge treatments. With YNS being so rare, finding even one study is hard!

OCTREOTIDE injections; can be a once a month shot (harder to get approved by insurance) or 3-times-a-day self-injections. This helped three YNS people dramatically reduce pleural effusions and lymphedema.---“Successful Octreotide Treatment of Chylous Pleural Effusion and Lymphedema in the Yellow Nail Syndrome”, Makrilakis K, Pavlatos S, Giannikopoulos G, Toubanakis C, Katsilambros N. Annals of Internal Medicine,Aug 2004; Volume 141 Number 3, 246-7. “Yellow Nail Syndrome: Treatment with Octreotide”, Hillerdal G. Clinical Respiratory Journal, Dec 2007; 120. “Case-Based Discussion from North Tyneside General Hospital: Somatostatin Analogues in Yellow Nail Syndrome Associated with Recurrent Pleural Effusions”, Brooks KG, Echevarria C, Cooper D, et al. Thorax. Published Online First: June 12 2014 doi;10.1136/thoraxjnl-2014-205426.

IV IG (intravenous immune globulin); raises the body’s protein level, which becomes low from getting pleural effusions and ascites drained. This helped two YNS people dramatically reduce pleural effusions and lymphedema--- “T and B cell Deficiency Associated with Yellow Nail Syndrome”. Gupta S, Samra D, Yel L, Agrawal S., Scand J Immunol. 2012 Mar;75(3):329-35.

IV ALBUMIN; quite a few YNS people have low albumin levels. This raises the body’s protein level, which may reduce ascites and lymphedema ---“Yellow Nail Syndrome with Persistent hypoalbuminaemia”, Sahi SP, Bansal SK. Br J Clin Pract, 1988 Jan;42(1):36-7. “A Case of the Yellow Nail Syndrome Associated with Massive Chylous Ascites, Pleural and Pericardial Effusions”, Malek NP, Ocran K, et al. , Z Gastroenterol. 1996 Nov;34(11):763-6. “Yellow Nail Syndrome as a Cause of Unexplained Edema”, Cimini C, Giunta R, Utili R, Durante-Mangoni E., Monaldi Arch Chest Dis. 2009 Dec;71(4):176-9.

THYROID medicine; quite a few YNS people have low thyroid; worth getting it tested---“Discovery of a Yellow Nail Syndrome with Major Hypothyroidism”, Noel-Savina E, Paleiron N, et al. Rev Pneumol Clin. 2012 Oct;68(5):315-7.

Hope this helps.  
Ken
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Avatar universal
Just to endorse what Mike says above, I can report that my coughing, sinusitis, runny nose etc. has decreased after 2 weeks on the Kaloba and apple cider vinegar usage. I am always willing to try anything which will help my symptoms evern though I realise that there is no cure for our condition. Anything which will relieve symptoms and hopefully deter lung damage has got to be worth trying. I do take other homeopathic treatments too for related problems and I'm a firm believer in natural products for medicinal use. After all, apart from antibiotics, there isn't a lot which can be prescribed for us. Obviously, this is a short time in which to try out the Kaloba and the vinegar drink but it's the first time this year that I have had any relief from coughing day and night. I am going to continue with both products and hope that my improvement continues. I just want to thank Mike for letting us know about Kaloba and apple cider vinegar (with Mother). We all need to try and help each other out as there are not a lot of us around.

Katie
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Avatar universal

As you may have noticed, there has been some ongoing discussions between myself and katieuk52 on the use of a product called Kaloba, (pelargonium sidoides ) used in conjunction with organic apple cider + mother. (manufacturer : Bragg USA)

After about 6 weeks of using this treatment (along with Vit D and Vit E pills) I have found that my sinus discharge and coughing has reduced substantially. My own YNS is not a severe as others posted on this page, but Katieuk52 who has a more severe affliction than me has also used this medication and is reporting some success after only 2 weeks use.  I hasten to add its not a cure, but indications so far show its effective in reducing some of the symptoms of YNS.

Please feel free to drop me a line if you need more info.

mike.
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Avatar universal
No Mike, I didn't find anything else which I could access by Helen or anyone else for that matter. All research seems to be old now.
However, the paper  by Dr. Mackie was interesting and I have printed it up to give to my consultant when I see him in early November. I'm not sure whether he will take any interest at all as we're having severe cut backs in our NHS & I'll be lucky if I can even persuade him to order a CT scan on my lungs. The Kaloba has marginally reduced the amount of tissues I've gone through this week and I'm not coughing as much. Fingers crossed. I've only used the vinegar for 2 days so the jury is still out on that one. I'll stay in touch.  

Katie

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Avatar universal

I will cross my finger for you - a good scientific approach... :)

Did you find anything on Dr Mackie's paper that was new / of interest?  She appears to be treating patients with symptoms far worse than mine with some degree of success.
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Avatar universal
I now have the Kaloba tablets and I have Apple Cider vinegar with 'Mother' being delivered tomorrow. I don't mind the vinegar as it also helps with the absorption of Iodine for my thyroid problem. I will post back here if I do have improvement as the info may help other people with YNS. There is so little research done on our minority group that we need to share info and help each other out.

Katie
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Avatar universal
I've sent another message Mike.

Katie
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Avatar universal
Got your post.

Sent you an e-mail last night, hope you got it.


Mike
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Avatar universal
Thanks for that Mike. I have posted a message to you and you should get a message or pop-up with it.
I have Googled Dr. Mackie's name and now going through her info.

Katei
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Avatar universal
Woops!! Its Dr Helen Mackie - not Mackenzie.  Sorry!
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Avatar universal
Hi Katie,

Good luck with the Kaloba, hope it works for you. It took a few days for the effects to kick in with me.

I am now booked for a CT scan every year to plot "progress" so we will just see where we go.  Not sure how you attach docs on this site either.  If its ok with you I can give you my email address, then you can drop me an e-mail. I can then reply.
Other than that, Google : Dr Helen Mackenzie Australia yellow nail syndrome and all sorts of stuff should pop up.  She has been quite active on the subject both here and in New Zealand.

Kind regards,

Mike.
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