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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.
I too am from the Carolinas and i have a boy friend who is also dealing with this disorder , we just moved him from Missouri where his doctor there find out he had it. We where tolded that there is no cure and that there was only 40 cases in the United States with it and it would effact the liver then the lungs we too are trying to find a good doctor that knows what to do for this , and if i hear of anything i will be glad to post it on here so others can read it . May God Bless you and your family , and to all the others who read this you all are in our prayers .
Peggie Phillips from South Carolina
Peggie Phillips from South Carolina
I'm suspicious that I have YNS as well. It must be rare because for 10+ years and frequent physical exams and emergency room visits, no one has ever commented on my yellow, malformed nails...not even the podiatrist -- just said that it was not fungal. Now that I've determined this might be the cause of all my problems (breathing problems, enlarged lymph nodes, etc.), I'm not sure what kind of doctor to go to first. I know you posted your comment back in 11/08, but in case you get this, any ideas would help.
I hope that your boyfriend has had good luck finding treatment and that it is working for him. I will keep him and all that are experiencing this rare condition in my prayers.
I hope that your boyfriend has had good luck finding treatment and that it is working for him. I will keep him and all that are experiencing this rare condition in my prayers.
I have yellow nail syndrom and would like to share my experiance in the hope that someone can be helped by it.
I am a 61 year old male living in Sweden. My symptoms started about six years ago. I saw a number of doctors that all saw the symtoms as independent problems. I was checked for a multitude of disorders whithout getting a diagnosis. Becouse of the scarseness of the syndrom i belive it is hard to find a doctor that has heard of it.
After about a year of increasing problems, clawlike nails, severe caughing, and swollen lower legs, I found out about yellow nail syndrom on the Internet.
I learned that large doses of vitamin E could hold back the symptoms from worsening if not cure the problems. I now eat 500 mg vitamin E in the morning and the same at night. Vitamin E in large doses is laxative but my stomach gradually got used to an increasing dose. I also take a small gulp of oil and vitamin C together with the vitamin
E. This is said to help the body to take up all the vitamin E.
Soon after I started this treatment my nails started to grow out normally. They are now completely normal. The swelling of my legs is only slight. I still have a light caugh and some running from the nose, but nothing like it was before the treatment started. My condition has been stable for about five years
I learned that there is different forms of vitamin E, natural and sythetic. It is the natural form that does the trick. The proper name of it contains greek letters and I dont know how to write that here.
In connection with the dose I should say that I weigh about 80 kg.
I hope this can be of benefit to someone
Dan Lundgren
I am a 61 year old male living in Sweden. My symptoms started about six years ago. I saw a number of doctors that all saw the symtoms as independent problems. I was checked for a multitude of disorders whithout getting a diagnosis. Becouse of the scarseness of the syndrom i belive it is hard to find a doctor that has heard of it.
After about a year of increasing problems, clawlike nails, severe caughing, and swollen lower legs, I found out about yellow nail syndrom on the Internet.
I learned that large doses of vitamin E could hold back the symptoms from worsening if not cure the problems. I now eat 500 mg vitamin E in the morning and the same at night. Vitamin E in large doses is laxative but my stomach gradually got used to an increasing dose. I also take a small gulp of oil and vitamin C together with the vitamin
E. This is said to help the body to take up all the vitamin E.
Soon after I started this treatment my nails started to grow out normally. They are now completely normal. The swelling of my legs is only slight. I still have a light caugh and some running from the nose, but nothing like it was before the treatment started. My condition has been stable for about five years
I learned that there is different forms of vitamin E, natural and sythetic. It is the natural form that does the trick. The proper name of it contains greek letters and I dont know how to write that here.
In connection with the dose I should say that I weigh about 80 kg.
I hope this can be of benefit to someone
Dan Lundgren
I have yellow nail syndrom and would like to share my experiance in the hope that someone can be helped by it.
I am a 61 year old male living in Sweden. My symptoms started about six years ago. I saw a number of doctors that all saw the symtoms as independent problems. I was checked for a multitude of disorders whithout getting a diagnosis. Becouse of the scarseness of the syndrom i belive it is hard to find a doctor that has heard of it.
After about a year of increasing problems, clawlike nails, severe caughing, and swollen lower legs, I found out about yellow nail syndrom on the Internet.
I learned that large doses of vitamin E could hold back the symptoms from worsening if not cure the problems. I now eat 500 mg vitamin E in the morning and the same at night. Vitamin E in large doses is laxative but my stomach gradually got used to an increasing dose. I also take a small gulp of oil and vitamin C together with the vitamin
E. This is said to help the body to take up all the vitamin E.
Soon after I started this treatment my nails started to grow out normally. They are now completely normal. The swelling of my legs is only slight. I still have a light caugh and some running from the nose, but nothing like it was before the treatment started. My condition has been stable for about five years
I learned that there is different forms of vitamin E, natural and sythetic. It is the natural form that does the trick. The proper name of it contains greek letters and I dont know how to write that here.
In connection with the dose I should say that I weigh about 80 kg.
I hope this can be of benefit to someone
Dan Lundgren
I am a 61 year old male living in Sweden. My symptoms started about six years ago. I saw a number of doctors that all saw the symtoms as independent problems. I was checked for a multitude of disorders whithout getting a diagnosis. Becouse of the scarseness of the syndrom i belive it is hard to find a doctor that has heard of it.
After about a year of increasing problems, clawlike nails, severe caughing, and swollen lower legs, I found out about yellow nail syndrom on the Internet.
I learned that large doses of vitamin E could hold back the symptoms from worsening if not cure the problems. I now eat 500 mg vitamin E in the morning and the same at night. Vitamin E in large doses is laxative but my stomach gradually got used to an increasing dose. I also take a small gulp of oil and vitamin C together with the vitamin
E. This is said to help the body to take up all the vitamin E.
Soon after I started this treatment my nails started to grow out normally. They are now completely normal. The swelling of my legs is only slight. I still have a light caugh and some running from the nose, but nothing like it was before the treatment started. My condition has been stable for about five years
I learned that there is different forms of vitamin E, natural and sythetic. It is the natural form that does the trick. The proper name of it contains greek letters and I dont know how to write that here.
In connection with the dose I should say that I weigh about 80 kg.
I hope this can be of benefit to someone
Dan Lundgren
I am a male, age 62. It took 6 - 7 years to finally get the diagnosis of YNS. At first, it was just a nuisance (yellow nails, sinusitus, some swelling in limbs). Then the swelling in hands and ankles got worse, then the pleural effusions came on (lung cavity needs to be drained every 3-4 weeks, and now seems to be sooner).
This condition now feels very threatening. I am under the care of a Univ of Penn doctor (I live in the Philadelphia area). I am taking a perscription drug called Octreotide for the pleural effusions. Other YNS people have tried this drug with some success. I have been on it for almost 3 months, but I fear the Octreotide isn't working to reduce my pleural effusions, and have lined up two other perscription drugs (Zoledronic Acid & Bevacizumab; via Internet research) that I will try to get my doctor to look into (and get the insurance company on board). With all three drugs, the goal is to stop the pleural effusions from forming. These last two are used with cancer patients who get pleural effusions, but the studies indicate they help people with non-malignant effusions. All three are supposed to also help with the lymphedema (though the Octreotide hasn't done that for me, so far).
Diuretics don't work on me, and I read on the LymphedemaPeople website that if the swelling is caused by a lymphatic disorder (such as YNS) that using diurectics (which reduce water, not lymph) can do more harm than good. Still, for some YNS people it seems to work. I also tried vitamin E; didn't work.
I have read that there are now between 100 - 150 YNS patients world-wide -- not enough of us to get any real attention. Though YNS people all have the same 3 major symptoms, this disease seems to affect each of us quite differently.
The pleural effusions are extremely affecting my life. As the lung cavity fills up with the plueral effusions, it compresses the lungs, making it very difficult to draw a breath. It's only been a week since I was last drained, and already it's getting difficult to breath. Each time I am drained, about 4 liters (yes, liters--about 5 pounds of liquid) are removed. The doctor wants to do a pleurodesis, where they "glue" the lungs to the lung cavity to block the effusions from going into the cavity, but then the blocked liquid will go somewhere else. I read a case study of a YNS person who had that operation done, and it killed her. Her legs actually split open from the massive buildup of fluid (10 liters a day of fluid was coming out of her legs). At least the lung cavity can be drained--the overall body can't be.
Is anyone aware of any other support groups? I have found some discussions on LymphedemaPeople under Lymphatic Disorders and under Rare Ophan Diseases, and also on MedHelp.
This condition now feels very threatening. I am under the care of a Univ of Penn doctor (I live in the Philadelphia area). I am taking a perscription drug called Octreotide for the pleural effusions. Other YNS people have tried this drug with some success. I have been on it for almost 3 months, but I fear the Octreotide isn't working to reduce my pleural effusions, and have lined up two other perscription drugs (Zoledronic Acid & Bevacizumab; via Internet research) that I will try to get my doctor to look into (and get the insurance company on board). With all three drugs, the goal is to stop the pleural effusions from forming. These last two are used with cancer patients who get pleural effusions, but the studies indicate they help people with non-malignant effusions. All three are supposed to also help with the lymphedema (though the Octreotide hasn't done that for me, so far).
Diuretics don't work on me, and I read on the LymphedemaPeople website that if the swelling is caused by a lymphatic disorder (such as YNS) that using diurectics (which reduce water, not lymph) can do more harm than good. Still, for some YNS people it seems to work. I also tried vitamin E; didn't work.
I have read that there are now between 100 - 150 YNS patients world-wide -- not enough of us to get any real attention. Though YNS people all have the same 3 major symptoms, this disease seems to affect each of us quite differently.
The pleural effusions are extremely affecting my life. As the lung cavity fills up with the plueral effusions, it compresses the lungs, making it very difficult to draw a breath. It's only been a week since I was last drained, and already it's getting difficult to breath. Each time I am drained, about 4 liters (yes, liters--about 5 pounds of liquid) are removed. The doctor wants to do a pleurodesis, where they "glue" the lungs to the lung cavity to block the effusions from going into the cavity, but then the blocked liquid will go somewhere else. I read a case study of a YNS person who had that operation done, and it killed her. Her legs actually split open from the massive buildup of fluid (10 liters a day of fluid was coming out of her legs). At least the lung cavity can be drained--the overall body can't be.
Is anyone aware of any other support groups? I have found some discussions on LymphedemaPeople under Lymphatic Disorders and under Rare Ophan Diseases, and also on MedHelp.
I have this too and have had it for about 10 years. I'm only 33. I have not found a doctor who can help. I would also like to find a forum of something where we can exchange ideas and such. Thank you!
I have this too and have had it for about 10 years. I'm only 33. I have not found a doctor who can help. I would also like to find a forum of something where we can exchange ideas and such. Thank you!
Good to hear from someone else who has this. What YNS symptoms do you have?
I first showed YNS symptoms in 2005; it started with sinusitis, then yellow nails, then swelling (2007), then pleural effusions (end of 2009, got bad in 2010).
I go to a Penn pulmonologist, and get my lung cavities drained every week, about 2 liters each time, alternating between the two lung cavities. I've been taking shots of Octreotide since June 2010--first the daily shots (500mg twice a day then in Sept 2010 500mg three times a day) then the monthly shots (30mg) starting in Jan 2011. Octreotide helped 2 other YNS people to control pleural effusions. I think you can only get Octreotide from a major medical facility, such as Penn or Mayo clinic, etc, and I only convinced my Penn doctor to give it to me after finding those 2 articles. I am very heavy into research.
Last fall I saw a Swedish medical study called "Titanium, Sinusitis, and the Yellow Nail Syndrome" that claims that titanium and/or titanium dioxide is the cause of YNS. You can read it at: http://www.springerlink.com/content/55n8226584171427/fulltext.pdf.
I had 2 "shed" fingernails tested (as was done in the study), and it showed I have titanium levels: 6.2 µg/g in one nail and 5.8 µg/g in the other. I also had the Melisa blood test for metals, which showed I have a mild metal allergy to both titanium (4.1) and titanium dioxide (3.5). No other metals tested positive.
I have stopped intake of titanium dioxide (it's everywhere--in pill/vitamin/candy coatings, toothpaste, gum, hair dye, cosmetics, cigarette paper, cigarette filters, some cheeses/soup, etc). In food/medicine ingredients, you see it as titanium dioxide, E171, or CI77891. Its chemical name is TiO2.
I also had a crown that had a titanium pin removed, as well as the other 4 gold crowns because the gold interacts with titanium, causing the release of titanium ions, which causes the problems. The crowns/pin removal was at the end of 2010.
It's been two months, and so far, there has been no real reduction of the pleural effusions, though I have seen improvement in the swelling in my hands. It's very hard to stop all intake of titanium dioxide. There are some medicines (coated in titanium dioxide) that I must occasionally take, for which I haven't been able to find a replacement that doesn't have titanium dioxide. When I take them, the pleural effusions are worst that week.
I haven't given up on titanium being the cause of YNS. The alternative is an operation that prevents the fluid from going into the lung cavity. There are two procedures for this: one glues the lungs to the lung cavity to block the fluid, the other blocks the vessels that bring the fluid to the lung cavities.
But since this just blocks the fluid, and doesn't stop it, I am resistance, especially since I saw a medical study where a YNS person who had this operation died when the massive fluid went to her limbs, literally spitting her legs open, and shutting down all her organs. There is another procedure where the swollen legs are cut open to drain the fluid and a skin graft is placed over the "open" skin, but this is a solution I cannot condone.
Only a third of YNS people get the pleural effusions, so this may be something that you never encounter.
As you can see, this condition has become pretty threatening to me, and I am trying very hard to find solutions.
I first showed YNS symptoms in 2005; it started with sinusitis, then yellow nails, then swelling (2007), then pleural effusions (end of 2009, got bad in 2010).
I go to a Penn pulmonologist, and get my lung cavities drained every week, about 2 liters each time, alternating between the two lung cavities. I've been taking shots of Octreotide since June 2010--first the daily shots (500mg twice a day then in Sept 2010 500mg three times a day) then the monthly shots (30mg) starting in Jan 2011. Octreotide helped 2 other YNS people to control pleural effusions. I think you can only get Octreotide from a major medical facility, such as Penn or Mayo clinic, etc, and I only convinced my Penn doctor to give it to me after finding those 2 articles. I am very heavy into research.
Last fall I saw a Swedish medical study called "Titanium, Sinusitis, and the Yellow Nail Syndrome" that claims that titanium and/or titanium dioxide is the cause of YNS. You can read it at: http://www.springerlink.com/content/55n8226584171427/fulltext.pdf.
I had 2 "shed" fingernails tested (as was done in the study), and it showed I have titanium levels: 6.2 µg/g in one nail and 5.8 µg/g in the other. I also had the Melisa blood test for metals, which showed I have a mild metal allergy to both titanium (4.1) and titanium dioxide (3.5). No other metals tested positive.
I have stopped intake of titanium dioxide (it's everywhere--in pill/vitamin/candy coatings, toothpaste, gum, hair dye, cosmetics, cigarette paper, cigarette filters, some cheeses/soup, etc). In food/medicine ingredients, you see it as titanium dioxide, E171, or CI77891. Its chemical name is TiO2.
I also had a crown that had a titanium pin removed, as well as the other 4 gold crowns because the gold interacts with titanium, causing the release of titanium ions, which causes the problems. The crowns/pin removal was at the end of 2010.
It's been two months, and so far, there has been no real reduction of the pleural effusions, though I have seen improvement in the swelling in my hands. It's very hard to stop all intake of titanium dioxide. There are some medicines (coated in titanium dioxide) that I must occasionally take, for which I haven't been able to find a replacement that doesn't have titanium dioxide. When I take them, the pleural effusions are worst that week.
I haven't given up on titanium being the cause of YNS. The alternative is an operation that prevents the fluid from going into the lung cavity. There are two procedures for this: one glues the lungs to the lung cavity to block the fluid, the other blocks the vessels that bring the fluid to the lung cavities.
But since this just blocks the fluid, and doesn't stop it, I am resistance, especially since I saw a medical study where a YNS person who had this operation died when the massive fluid went to her limbs, literally spitting her legs open, and shutting down all her organs. There is another procedure where the swollen legs are cut open to drain the fluid and a skin graft is placed over the "open" skin, but this is a solution I cannot condone.
Only a third of YNS people get the pleural effusions, so this may be something that you never encounter.
As you can see, this condition has become pretty threatening to me, and I am trying very hard to find solutions.
Hi,
My mother has just been diagnosed with YNS and has terrible lung problems. She has been in and out of hospital for years now and they are only just diagnosing it as YNS. Her quality of life is terrible and she has had to stop working and can't do anything really.
Some of the posts on this forum have been over a period of several years. Is there anybody that has had any success with treatment? We are getting desperate! I am sure you all recognize the frustration.
My mother has just been diagnosed with YNS and has terrible lung problems. She has been in and out of hospital for years now and they are only just diagnosing it as YNS. Her quality of life is terrible and she has had to stop working and can't do anything really.
Some of the posts on this forum have been over a period of several years. Is there anybody that has had any success with treatment? We are getting desperate! I am sure you all recognize the frustration.
Sorry to hear about your mother. I have had YNS since 2005, with large pleural effusions starting in 2009.
I get monthly shots of Octreotide, which helped 2 other YNS people with pleural effusions and lymphedema. It hasn't done much for me.
There is another study where 2 YNS people with T and B cell deficiency got IVIG/SCIV treatment and it helped their pleural effusions and lymphedema. I got tested for T and B cell deficiency, and my immune levels were normal, so insurance wouldn't cover it (it's very expensive). I really wanted to try this.
I chose to not get pleurodesis (there is one study where the fluid--blocked from the lung cavity--went everywhere else in the body). The person died.
I also talked to another person whose YNS daughter died after getting thoracic surgery (which blocked the fluid from the lung cavity, sending it everywhere else).
I now need daily drainage (get about 500 ml each day, each side). I got two drainage tubes put in (one on each side), but not the ones that dangle outside the body.
Instead, they feed into a chemo port, which is under the skin. You use a needle to access the port and drain the fluid. I live in the Philadelphia area, and a Penn doctor used this novel approach. I was the second person in the world to utilize a chemo port like this, and since then, a couple of other people (not YNS) have had this done. A chemo port is designed to put medicine in, not remove pleural fluid, so sometimes it clogs. Hardly perfect, but better than getting weekly thoracentesis.
Still, it's hard on the body (especially since the pleural fluid is high in protein--which the body needs, but I'm draining it out), so often I don't feel as strong as I would like. I'm getting my thyroid checked because there was a recent study that linked 2 YNS people to low thyroid.
In one of my posts, I discussed the titanium dioxide / titanium study (it was felt they caused YNS). I've been titanium dioxide / titanium free for about 2 years--it didn't work for me.
I frequently look through the PubMed site, hunting for treatment. So far, it's been a challenge.
I get monthly shots of Octreotide, which helped 2 other YNS people with pleural effusions and lymphedema. It hasn't done much for me.
There is another study where 2 YNS people with T and B cell deficiency got IVIG/SCIV treatment and it helped their pleural effusions and lymphedema. I got tested for T and B cell deficiency, and my immune levels were normal, so insurance wouldn't cover it (it's very expensive). I really wanted to try this.
I chose to not get pleurodesis (there is one study where the fluid--blocked from the lung cavity--went everywhere else in the body). The person died.
I also talked to another person whose YNS daughter died after getting thoracic surgery (which blocked the fluid from the lung cavity, sending it everywhere else).
I now need daily drainage (get about 500 ml each day, each side). I got two drainage tubes put in (one on each side), but not the ones that dangle outside the body.
Instead, they feed into a chemo port, which is under the skin. You use a needle to access the port and drain the fluid. I live in the Philadelphia area, and a Penn doctor used this novel approach. I was the second person in the world to utilize a chemo port like this, and since then, a couple of other people (not YNS) have had this done. A chemo port is designed to put medicine in, not remove pleural fluid, so sometimes it clogs. Hardly perfect, but better than getting weekly thoracentesis.
Still, it's hard on the body (especially since the pleural fluid is high in protein--which the body needs, but I'm draining it out), so often I don't feel as strong as I would like. I'm getting my thyroid checked because there was a recent study that linked 2 YNS people to low thyroid.
In one of my posts, I discussed the titanium dioxide / titanium study (it was felt they caused YNS). I've been titanium dioxide / titanium free for about 2 years--it didn't work for me.
I frequently look through the PubMed site, hunting for treatment. So far, it's been a challenge.
Hi everyone. I live in the UK. I' glad I found this forum and that I'm not alone.
I was diagnosed with YNS at the age of 57 years in November 2009 after a year when my GP suspected my constant cough, rhinitis & sinusitis might be connected to hay-fever. I tried antihistamines with no improvement. In the summer of 2009, I noticed that my finger and toenails had become white and then gradually darkened to yellow. My GP referred me to a dermatologist who didn’t know what was wrong so she called in a colleague who asked me if I had a cough, sinusitis etc. She also noticed that I had lympheodema in my ankles and then told me I had YNS. They took nail clippings and photographed fingers & toes and prescribed 6 weeks of Itraconazole. I went back after two month & the consultant ordered a CT scan for my chest and prescribed more Itraconazole and support stockings to try and stop my ankles swelling too much. The CT scan showed Bronchiectasis in both lungs – mainly in the right. She then discharged me and told me to take antibiotics – Amoxycillin 500mg every time I got sinusitis or a chest infection and Itraconazole when my nails become really discoloured (brown at times).
I now just see my GP for my meds and although I cough day and night and I’m breathless on exertion, I think I’m doing OK. I take 800mg vitamin E each day which does help the nails – both the colour and helps them stop detaching. My big toe nails became really thick and clawed and were getting infections under the nail so I had them removed and the nail bed destroyed to prevent further infections.
I have read of cases where people developed thyroid problems along with YNS. I suddenly developed hypothyroidism in August 2010 but didn’t link it until recently.
I had read the same article about titanium maybe being implicated with YNS but as I don’t really have much in the way of this in my dental regime, I discussed it with my dentist & decided to leave well alone. I wonder if there are any more of us?
Katie R
I was diagnosed with YNS at the age of 57 years in November 2009 after a year when my GP suspected my constant cough, rhinitis & sinusitis might be connected to hay-fever. I tried antihistamines with no improvement. In the summer of 2009, I noticed that my finger and toenails had become white and then gradually darkened to yellow. My GP referred me to a dermatologist who didn’t know what was wrong so she called in a colleague who asked me if I had a cough, sinusitis etc. She also noticed that I had lympheodema in my ankles and then told me I had YNS. They took nail clippings and photographed fingers & toes and prescribed 6 weeks of Itraconazole. I went back after two month & the consultant ordered a CT scan for my chest and prescribed more Itraconazole and support stockings to try and stop my ankles swelling too much. The CT scan showed Bronchiectasis in both lungs – mainly in the right. She then discharged me and told me to take antibiotics – Amoxycillin 500mg every time I got sinusitis or a chest infection and Itraconazole when my nails become really discoloured (brown at times).
I now just see my GP for my meds and although I cough day and night and I’m breathless on exertion, I think I’m doing OK. I take 800mg vitamin E each day which does help the nails – both the colour and helps them stop detaching. My big toe nails became really thick and clawed and were getting infections under the nail so I had them removed and the nail bed destroyed to prevent further infections.
I have read of cases where people developed thyroid problems along with YNS. I suddenly developed hypothyroidism in August 2010 but didn’t link it until recently.
I had read the same article about titanium maybe being implicated with YNS but as I don’t really have much in the way of this in my dental regime, I discussed it with my dentist & decided to leave well alone. I wonder if there are any more of us?
Katie R
There are only about 150 YNS people world-wide. I have the whole condition: yellow detaching nails, lymphedema, and pleural effusions. I have also developed ascites (fluid build-up in the stomach cavity). I think this is caused by the loss of protein/nutrients from getting the pleural cavities drained. (Starving children get the extended bellies from lack of protein.)
I was OKed for getting monthly IVIG infusions, which helped two other YNS people with pleural effusions and lymphedema. I see a definite improvement in the lymphedema for a few days, but then it returns. Since I don't have a B or T cell deficiency, getting OKed was very very difficult.
I also get a monthly shot of Sandostatin Lar depot, which helped two other YNS people with pleural effusions and lymphedema.
I also take thyroid medication.
I have no titanium metal in my body (had one titanium dental pin removed, aand replace 5 gold caps with zirconium) and still watch my intake of titanium dioxide (white food coloring used to make skim milk white, food white; coat pills, etc).
My right pleural effusion has dried up, but I remove about 250 ml/day on the left side, using the chemo port to drain it. I get the ascites drained at the hospital about every week (removing about 7 liters each time). I get IV albumin with the ascites procedure (to replace the protein-rich fluid that gets removed.) Albumin helped other YNS people.
I take antibiotics every day. I took Itraconazole and vitamin E for a while, but it didn't help. Basically, I am getting every advance treatment there is--and nothing is really helping. My appetite is good, but if you look beneath the lymphedema, I am very thin. I was on TPN (IV nutrition) for a short while, but got an infected port, which sent me to the ICU. I think this is why I got OKed for the IVIG.
My YNS started in 2005 with a cough and sinusitis, then the nails, In 2007, my ankles started swelling. In early 2009, I had trouble breath, and discovered a right pleural effusion; later that year, there was pleural effusion in the other side. I began the monthly Sandostatin in 2009.
In 2011, I had a chemo port put into one lung cavity. In 2012, I had another chemo port put into the other side. Shortly after that the ascites started. Started the monthly IVIG Dec 2012. My lymphedema has gotten worse (only my shoulders and upper arms don't have it).
I continue to search for new treatments. Most YNS people don't get symptoms as bad as mine. A leading authority says it mainly benign--unfortunately, I'm the exception. I have read that the nails are the barometer of YNS--so if the nails are improving, that is a good thing.
I was OKed for getting monthly IVIG infusions, which helped two other YNS people with pleural effusions and lymphedema. I see a definite improvement in the lymphedema for a few days, but then it returns. Since I don't have a B or T cell deficiency, getting OKed was very very difficult.
I also get a monthly shot of Sandostatin Lar depot, which helped two other YNS people with pleural effusions and lymphedema.
I also take thyroid medication.
I have no titanium metal in my body (had one titanium dental pin removed, aand replace 5 gold caps with zirconium) and still watch my intake of titanium dioxide (white food coloring used to make skim milk white, food white; coat pills, etc).
My right pleural effusion has dried up, but I remove about 250 ml/day on the left side, using the chemo port to drain it. I get the ascites drained at the hospital about every week (removing about 7 liters each time). I get IV albumin with the ascites procedure (to replace the protein-rich fluid that gets removed.) Albumin helped other YNS people.
I take antibiotics every day. I took Itraconazole and vitamin E for a while, but it didn't help. Basically, I am getting every advance treatment there is--and nothing is really helping. My appetite is good, but if you look beneath the lymphedema, I am very thin. I was on TPN (IV nutrition) for a short while, but got an infected port, which sent me to the ICU. I think this is why I got OKed for the IVIG.
My YNS started in 2005 with a cough and sinusitis, then the nails, In 2007, my ankles started swelling. In early 2009, I had trouble breath, and discovered a right pleural effusion; later that year, there was pleural effusion in the other side. I began the monthly Sandostatin in 2009.
In 2011, I had a chemo port put into one lung cavity. In 2012, I had another chemo port put into the other side. Shortly after that the ascites started. Started the monthly IVIG Dec 2012. My lymphedema has gotten worse (only my shoulders and upper arms don't have it).
I continue to search for new treatments. Most YNS people don't get symptoms as bad as mine. A leading authority says it mainly benign--unfortunately, I'm the exception. I have read that the nails are the barometer of YNS--so if the nails are improving, that is a good thing.
It's good that we can share info even if we cannot be helped. As long as I carry on the way I am I will cope but the lymphoedema in my ankles, feet & arms does seem to be getting worse. My cough is also getting worse - all day and when I'm turning over at night. I have sleep apnoea as well which causes me o stop breathing for a short while and this wakes me up then the cough starts again. Can I ask how you know you have pleural effusions - what are the symptoms for that. I am getting breathless going upstairs now and wonder if this will get worse. My finger nails are pretty good now apart from my forefingers and thumbs although my toenails are all still very yellow but symptomless. I am sorry that you have so many problems with fluid build up - you seem to have a very bad case of YNS. It's the fact that so little is known about it that is so frustrating. Take care
Katie
Katie
Katie,
Regarding the pleural effusions, I was having a harder and harder time breathing, and got fatiqued quickly. I went to a pulmonologist, and he did an ultrasound and saw that the right pleural cavity was filled up. The left side had no fluid.
He did a thorocentesis and removed 1.7 liters of fluid. I went in every couple of weeks for thorocentesis, which really helped my breathing, but about 6 months later I started feeling like I couldn't breath again, even after getting a thorocentesis. The doctor discovered the left side had a pleural effusion--removed 1.7 liters of fluid. That's when I had a chemo port put in on the right side; and about a year later had another port put into the left side. The chemo ports are embedded under the side, so there is no tube dangling outside the body. I access each port using a needle that is attached to a syringe, and remove the fluid myself.
I have top doctors and have even talked to Dr. Maldonado, who is an authority in the US for YNS. Still, I have discovered that it's up to me to find new treatments, so I comb through the Pubmed website to see what is going on. I had high hopes about the titanium / titanium dioxide, and for the Octreotide (Sandostatin), and even more for the IVIG, but though all these helped other YNS people, they really haven't helped me.
Initially, after the pleural effusions were discovered, my doctors wanted to do a pleurodesis (basically, the outside of the lung is "glued" to the pleural cavity lining, thus blocking the fluid from coming in). The procedure just blocks the fluid from going into the pleural cavity--that fluid can flood the rest of the body. For some YNS people this worked out OK, but I saw a medical study where the person died (organs were suffocated from fluid), and talked to a father of a 27 year old woman who had a pleurodesis (didn't work) followed by a thoraic ligation (operation that ties off the vessels that brings fluid into the pleural cavity); she died when the fluid went into the tissue (gained 100 pounds). At least you can drain it from a cavity. I refused this treatment and insisted on trying other routes--and I don't regret this decision..
Hopefully, you don't have pleural effusions--and won't need to deal with this. Only about 33% of YNS people get pleural effusions. But if you do get them--its worthwhile to understand the options.
Oh, I saw your posting on Rareshare. On both PubMed and Rareshare, your posting was the first I've seen in years.
Ken
Regarding the pleural effusions, I was having a harder and harder time breathing, and got fatiqued quickly. I went to a pulmonologist, and he did an ultrasound and saw that the right pleural cavity was filled up. The left side had no fluid.
He did a thorocentesis and removed 1.7 liters of fluid. I went in every couple of weeks for thorocentesis, which really helped my breathing, but about 6 months later I started feeling like I couldn't breath again, even after getting a thorocentesis. The doctor discovered the left side had a pleural effusion--removed 1.7 liters of fluid. That's when I had a chemo port put in on the right side; and about a year later had another port put into the left side. The chemo ports are embedded under the side, so there is no tube dangling outside the body. I access each port using a needle that is attached to a syringe, and remove the fluid myself.
I have top doctors and have even talked to Dr. Maldonado, who is an authority in the US for YNS. Still, I have discovered that it's up to me to find new treatments, so I comb through the Pubmed website to see what is going on. I had high hopes about the titanium / titanium dioxide, and for the Octreotide (Sandostatin), and even more for the IVIG, but though all these helped other YNS people, they really haven't helped me.
Initially, after the pleural effusions were discovered, my doctors wanted to do a pleurodesis (basically, the outside of the lung is "glued" to the pleural cavity lining, thus blocking the fluid from coming in). The procedure just blocks the fluid from going into the pleural cavity--that fluid can flood the rest of the body. For some YNS people this worked out OK, but I saw a medical study where the person died (organs were suffocated from fluid), and talked to a father of a 27 year old woman who had a pleurodesis (didn't work) followed by a thoraic ligation (operation that ties off the vessels that brings fluid into the pleural cavity); she died when the fluid went into the tissue (gained 100 pounds). At least you can drain it from a cavity. I refused this treatment and insisted on trying other routes--and I don't regret this decision..
Hopefully, you don't have pleural effusions--and won't need to deal with this. Only about 33% of YNS people get pleural effusions. But if you do get them--its worthwhile to understand the options.
Oh, I saw your posting on Rareshare. On both PubMed and Rareshare, your posting was the first I've seen in years.
Ken
Hi Ken, Thanks for the info on pleural effusuins - it sounds really awful but I'm glad that you have found a solution of sorts. I don't know how we'll get any further ahead on treatments as there doesn't seem to be a great lot of research going on - especially in the UK. When I was first diagnosed at dermatology, they took photographs of my finger & toe nails. I told my GP & he said that the photo's would turn up in a book at some point but that's as far as any interest was shown.
I attended a chest consultant for sleep apnoea in 2011 and the consultant was more interested in the YNS than the apnoea as I was the only person he'd seen with the condition. He asked me hod I'd been diagnosed & I showed him my toenails, told him about the cough, sinusitis, lympheodema etc. He was a bit sceptical till he saw it for himself.
So, unless I find a specialist in the UK, I have to rely on my own judgement as to when I need antibiotics, Itraconozone etc. and mg GP just prescribes them for me. I have an X-Ray of my lungs x 2 each year and I'm waiting for my annual CT scan to check on the bronchiectasis. I see our practice nurse for checks on my respiratory function and my hypothyroidism but otherwise, I just get on with it & watch for any deterioration in any of the symptoms.
Well - that's the 2 of us, the original poster & one other from the Carolinas, maybe Bridget, Dan from Sweden, Coughing Girl and AP00083. Eight people in total all looking for information. I hope the others come back to this section and let people know how they are doing.
Regards, Katie
I attended a chest consultant for sleep apnoea in 2011 and the consultant was more interested in the YNS than the apnoea as I was the only person he'd seen with the condition. He asked me hod I'd been diagnosed & I showed him my toenails, told him about the cough, sinusitis, lympheodema etc. He was a bit sceptical till he saw it for himself.
So, unless I find a specialist in the UK, I have to rely on my own judgement as to when I need antibiotics, Itraconozone etc. and mg GP just prescribes them for me. I have an X-Ray of my lungs x 2 each year and I'm waiting for my annual CT scan to check on the bronchiectasis. I see our practice nurse for checks on my respiratory function and my hypothyroidism but otherwise, I just get on with it & watch for any deterioration in any of the symptoms.
Well - that's the 2 of us, the original poster & one other from the Carolinas, maybe Bridget, Dan from Sweden, Coughing Girl and AP00083. Eight people in total all looking for information. I hope the others come back to this section and let people know how they are doing.
Regards, Katie
Katie,
I've never had any doctor willing to write up my YNS case in a medical paper. With so few people having YNS, it doesn't seem worth their time and engery. This is a shame because medical papers (like what you see on PubMed) are about the only way to learn anything.
The people who post in this forum and other forums, rarely post, and even if they do, it appears they don't return. It's possible to directly send a message to posters, and I did this one time. I only heard back from one person (that's how I talked to te father of the young woman who died. There used to be a Yahoo Groups forum for Yellow Nail Syndrome, and it was active, but was closed down because the person who formed it started a forum on CareShare. But when I went there, it never had anything.
Keep me informed --it's great to have someone else to talk to.
Ken
I've never had any doctor willing to write up my YNS case in a medical paper. With so few people having YNS, it doesn't seem worth their time and engery. This is a shame because medical papers (like what you see on PubMed) are about the only way to learn anything.
The people who post in this forum and other forums, rarely post, and even if they do, it appears they don't return. It's possible to directly send a message to posters, and I did this one time. I only heard back from one person (that's how I talked to te father of the young woman who died. There used to be a Yahoo Groups forum for Yellow Nail Syndrome, and it was active, but was closed down because the person who formed it started a forum on CareShare. But when I went there, it never had anything.
Keep me informed --it's great to have someone else to talk to.
Ken
Hi Ken, I haven't really looked for further info or forums since my initial diagnosis until recently which is when I found this site.
I have looked for a consultant in the UK who has an interest in YNS but haven't been able to find one. I must therefore, look after my own health and insist on regular blood tests.
My GP cannot refer me for a CT scan to monitor the bronchiectasis and so if my chest gets any worse, I will have to get a referral to a chest consultant for a CT scan through him.
Things are a bit different in the UK with our NHS as funding is becoming more limited and so GP's will only refer a patient for a treatment if it is cost-effective. The average person in the UK doesn't carry health insurance as the NHS has always provided a good service in the past.
If I find any new articles on YNS or it's treatment I will post here but I'm very doubtful that we'll find very much at all.
Katie
I have looked for a consultant in the UK who has an interest in YNS but haven't been able to find one. I must therefore, look after my own health and insist on regular blood tests.
My GP cannot refer me for a CT scan to monitor the bronchiectasis and so if my chest gets any worse, I will have to get a referral to a chest consultant for a CT scan through him.
Things are a bit different in the UK with our NHS as funding is becoming more limited and so GP's will only refer a patient for a treatment if it is cost-effective. The average person in the UK doesn't carry health insurance as the NHS has always provided a good service in the past.
If I find any new articles on YNS or it's treatment I will post here but I'm very doubtful that we'll find very much at all.
Katie
Hi Katie
I have read your story and it rings so many bells for me! I am 49 and was diagnosed with YNS after three years of suffering coughs, sinititis and what I thought was nail infections! It is so sad that this condition is so rare the doctors misdiagnose. I have all symtoms too. My nails were just dreadful discoloured thick, no cuticles. Three years later they have slightly improved but are still detached and a strange shape. It is so nice to know that others know exactly how you have felt and how hard it has been to deal with. I had a CT scan and really had to push hard for that and it showed bronchiastis. I have also been taking vitamin e for about 2 years and this has helped my nails. I forgot to mention that I am from the uk. Are there really only 150 cases in the world of this condition?
Would love to hear from you all
Tracey
I have read your story and it rings so many bells for me! I am 49 and was diagnosed with YNS after three years of suffering coughs, sinititis and what I thought was nail infections! It is so sad that this condition is so rare the doctors misdiagnose. I have all symtoms too. My nails were just dreadful discoloured thick, no cuticles. Three years later they have slightly improved but are still detached and a strange shape. It is so nice to know that others know exactly how you have felt and how hard it has been to deal with. I had a CT scan and really had to push hard for that and it showed bronchiastis. I have also been taking vitamin e for about 2 years and this has helped my nails. I forgot to mention that I am from the uk. Are there really only 150 cases in the world of this condition?
Would love to hear from you all
Tracey
Hi
Would love to talk to you about your condition as I have this too. It's been very difficult and you think you are alone
Please get in touch. Are you in the uk?
Tracey
Would love to talk to you about your condition as I have this too. It's been very difficult and you think you are alone
Please get in touch. Are you in the uk?
Tracey
I'm pleased to find this forum on YNS as many of you are. My story is similar to others told here. I first developed a sinus problem in '98 and my nails began showing the symptoms soon after. I was diagnosed probably 5 years later by Dr Fleckman at the University of Washington in Seattle WA. After the diagnosis I developed lymphoedema. I thought I may pass on some of what I do to control the symptoms.
I discovered first that taking supplements of nutritional yeast (not brewers) has helped my nails very much. I take up to 9 double "O" capsules per day. Three per meal. I also take vitamin E though I can't say if it has much effect. It can't hurt. I have started and stopped taking the Nutritional Yeast several times and observed my nails getting better and worst concurrent to my taking it or not. My nails (except for big toes) are very healthy. The Yeast need to be fresh and not exposed to sunlight because the B compounds will degrade.
I also irrigate my sinuses every evening using a "Water Pic" with a nasal adapter. I mix a saline solution using a teaspoon of sea salt and a tea spoon of baking soda per two cups of warm water. Information on this process can be found on the internet. This cleans accumulations of mucus from my sinuses helping me sleep and feel better over all. I quit taking antibiotics unless I really need to because their over use, I feel, can lead to further problems in the sinuses.
This, as you all know is a perplexing condition and so little known and understood. I have educated more doctors about my condition than I have found who know of it. I have had some actually react with incredulity and tell me I don't know what I'm talking about. I quickly tell them to google it at the Mayo Clinic and find they become quite chagrined upon discovering I know what I have. I've also had doctors tell me if I fix my nose I'll fix my nails and also others tell me what's effecting the nails is causing the nose problems. So little is known but this forum is a repository of information learned by persons who know this condition and are trying to find answers. I hope my my information can at least alleviate some of the symptoms.
Stan Hain, Seattle WA
I discovered first that taking supplements of nutritional yeast (not brewers) has helped my nails very much. I take up to 9 double "O" capsules per day. Three per meal. I also take vitamin E though I can't say if it has much effect. It can't hurt. I have started and stopped taking the Nutritional Yeast several times and observed my nails getting better and worst concurrent to my taking it or not. My nails (except for big toes) are very healthy. The Yeast need to be fresh and not exposed to sunlight because the B compounds will degrade.
I also irrigate my sinuses every evening using a "Water Pic" with a nasal adapter. I mix a saline solution using a teaspoon of sea salt and a tea spoon of baking soda per two cups of warm water. Information on this process can be found on the internet. This cleans accumulations of mucus from my sinuses helping me sleep and feel better over all. I quit taking antibiotics unless I really need to because their over use, I feel, can lead to further problems in the sinuses.
This, as you all know is a perplexing condition and so little known and understood. I have educated more doctors about my condition than I have found who know of it. I have had some actually react with incredulity and tell me I don't know what I'm talking about. I quickly tell them to google it at the Mayo Clinic and find they become quite chagrined upon discovering I know what I have. I've also had doctors tell me if I fix my nose I'll fix my nails and also others tell me what's effecting the nails is causing the nose problems. So little is known but this forum is a repository of information learned by persons who know this condition and are trying to find answers. I hope my my information can at least alleviate some of the symptoms.
Stan Hain, Seattle WA
I don't believe there are only 150 people in the world with Yellow Nail Syndrome. It is very difficult to diagnose, and I think many more people have it than is reported. I also have it - diagnosed in about 2006 after having symptoms since 2004 at the age of 48. It started with nail changes and nail loss, which over the period of a couple years eventually resolved. My predominant problem now is a severe productive chronic cough and chronic and continuous sinusitis. I have been coughing day and night for almost 10 years now. When I first developed the cough in 2004, I saw a pulmonary specialist who put me through every test under the sun and tried every treatment they could think of, to no avail. I was then sent to a specialist at the University of Washington, who also had no idea what was wrong. Finally I was diagnosed by a dermatologist in my area who specializes in fingernail conditions. Since then, despite many visits to several ENTs, pulmonary specialists, etc, nobody has been able to help me. Most MDs have never heard of YNS. So far I have been fortunate not to have developed lymphedema or pleural effusions. Just wanted to let you all know you are not alone - I think many more of us sufferers are out here than anybody realizes.
Hi Tracey - sorry for the delayed reply and I'm sorry that you also have this syndrome and it's many symptoms.
Katie.
Katie.
Lorikmt,
I agree with you about the 150 people having this syndrome. So much of the information about this condition is old and often repeated. I suppose you saw Dr Fleckman at the U of Wa. He diagnosed me. I would suggest, if you haven't already, to buy a water pic and nasal adapter and irrigate if possible twice a day. Also try the nutritional yeast I mentioned in my previous post. It can be bought at local PCC markets in Seattle. I purchase the capsules online they are much cheaper than retail. I tried totell Dr Fleckman about my accidental discovery about the yeast but he wasn't interested. It doesn't help with the Lymphedema for that I use compression socks and try to sleep with my hands raised above my head.
Good luck and I hope these suggestions help.
I agree with you about the 150 people having this syndrome. So much of the information about this condition is old and often repeated. I suppose you saw Dr Fleckman at the U of Wa. He diagnosed me. I would suggest, if you haven't already, to buy a water pic and nasal adapter and irrigate if possible twice a day. Also try the nutritional yeast I mentioned in my previous post. It can be bought at local PCC markets in Seattle. I purchase the capsules online they are much cheaper than retail. I tried totell Dr Fleckman about my accidental discovery about the yeast but he wasn't interested. It doesn't help with the Lymphedema for that I use compression socks and try to sleep with my hands raised above my head.
Good luck and I hope these suggestions help.
Hi All,
At last - real people who have the same issues as me!
Quick fact check.. I am male, 62, age 6'2" weigh around 82kg and live in sunny Perth Western Australia.
I to have been on the roundabout with doctors, crappy yellow nails, nasal discharge, phlegmy cough etc. Fortunately thus far no signs of the nastier symptoms. Been to ENT specialist, dermatology clinics with little effect.
The dermatology man did identify the yellow nail issue with my nails, (it will go when the sinus problems clear up etc) and the ENT man has me on Vit D tablets. Also had me on nasal flushes for a few months.
I have looked on the internet before under yellow nail and found some stuff that I really did not fully understand, but reading all the various posts really brings it home just how debilitating this YNS can get. I am going to try some for suggested treatments Vit E, yeast etc and see what happens.
My best wishes to all of you out there suffering from this horrible affliction.
mike
At last - real people who have the same issues as me!
Quick fact check.. I am male, 62, age 6'2" weigh around 82kg and live in sunny Perth Western Australia.
I to have been on the roundabout with doctors, crappy yellow nails, nasal discharge, phlegmy cough etc. Fortunately thus far no signs of the nastier symptoms. Been to ENT specialist, dermatology clinics with little effect.
The dermatology man did identify the yellow nail issue with my nails, (it will go when the sinus problems clear up etc) and the ENT man has me on Vit D tablets. Also had me on nasal flushes for a few months.
I have looked on the internet before under yellow nail and found some stuff that I really did not fully understand, but reading all the various posts really brings it home just how debilitating this YNS can get. I am going to try some for suggested treatments Vit E, yeast etc and see what happens.
My best wishes to all of you out there suffering from this horrible affliction.
mike
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