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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.
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
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
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
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
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
Katie
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.
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
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
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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