Aa
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.
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 :)
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.
Just want some help.
Please send the YNS article by Dr Helen Mackie. I always want to keep learning, and trying new things.
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.
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.
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).
Worth trying. But there can be some side effects: stomach/bowel problems (nausea, vomiting, diarrhea, heartburn).
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.
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.
Have an Answer?
You are reading content posted in the Respiratory Disorders Community
Find out what causes asthma, and how to take control of your symptoms.
Healing home remedies for common ailments
Tricks to help you quit for good.
Is your area one of the dirtiest-air cities in the nation?
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
