I just heard from Jim out in California that he has launched a website: www.DIPNECH.com.
He's compiled some very good information, and eventually hopes to use the site to compile information about patients. This could be the beginning of forming a registry.
Please visit the site!
Monday, April 18, 2011
Monday, April 11, 2011
Facebook page
I decided it was time to enter the 21st century, and I've set up a Facebook page. Just search for "Dipnech" (Facebook won't let you use all caps for your page name), and say you "like" the page. If I get some followers I'll start posting stuff there.
Thursday, April 7, 2011
A small ray of hope?
Thanks to my pulmonologist, I've just learned of a paper published in March in the American Journal of Respiratory and Critical Care Medicine entitled "Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia: A Systematic Overview." To be frank, there's nothing much new in this paper. But what is of interest is that the authors, a group at the Mayo Clinic in Arizona, propose the establishment of a national registry for patients diagnosed with DIPNECH to enable further study with the ultimate goal of establishing treatment guidelines.
The senior author is Farouk Mookadam, MD, MSc of the Department of Medicine. His e-mail address for correspondence and reprints is mookadam.farouk@mayo.edu.
Let's all write and encourage him to work on establishing this registry!
The senior author is Farouk Mookadam, MD, MSc of the Department of Medicine. His e-mail address for correspondence and reprints is mookadam.farouk@mayo.edu.
Let's all write and encourage him to work on establishing this registry!
Wednesday, February 2, 2011
SSRIs
Hope all of you DIPNECH readers are doing well.
Even with all my lemonade, sometimes things do get the better of me. Last fall I found myself going through an especially rough period. When I burst into tears in my pulmonologist's office I knew it was time to do something about it. So I started seeing a therapist. She prescribed an anti-depressant in the class known as selective serotonin reuptake inhibitors, or SSRIs, with a brief titration up to a modest dose.
Almost immediately I started feeling increased shortness of breath. At first I thought it might just be the weather getting colder. She thought it might be a bit of anxiety that sometimes occurs in the early weeks. But a few months later, while my mood and outlook have improved, I'm still frustratingly short of breath with the least amount of exertion.
Then I remembered that my carcinoid specialist had once measured the serotonin level in my blood. I couldn't remember why, but I do recall it was within normal range. So I called him to ask. Long story short: serotonin is definitely related to carcinoid syndrome, and with the thought that DIPNECH is a precursor to full-blown carcinoids he suggested that I might be just tipping the balance enough to be causing this problem. He recommended that I stop the SSRI. I'm going to taper back off and continue the therapy without it.
I'm just wondering, has anyone else tried SSRI therapy, and what have been the results?
Even with all my lemonade, sometimes things do get the better of me. Last fall I found myself going through an especially rough period. When I burst into tears in my pulmonologist's office I knew it was time to do something about it. So I started seeing a therapist. She prescribed an anti-depressant in the class known as selective serotonin reuptake inhibitors, or SSRIs, with a brief titration up to a modest dose.
Almost immediately I started feeling increased shortness of breath. At first I thought it might just be the weather getting colder. She thought it might be a bit of anxiety that sometimes occurs in the early weeks. But a few months later, while my mood and outlook have improved, I'm still frustratingly short of breath with the least amount of exertion.
Then I remembered that my carcinoid specialist had once measured the serotonin level in my blood. I couldn't remember why, but I do recall it was within normal range. So I called him to ask. Long story short: serotonin is definitely related to carcinoid syndrome, and with the thought that DIPNECH is a precursor to full-blown carcinoids he suggested that I might be just tipping the balance enough to be causing this problem. He recommended that I stop the SSRI. I'm going to taper back off and continue the therapy without it.
I'm just wondering, has anyone else tried SSRI therapy, and what have been the results?
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