Results 1 to 5 of 5

Thread: Neurogenic Rosacea Published Article attached

  1. #1
    Senior Member
    Join Date
    Jun 2005
    Posts
    119

    Default Neurogenic Rosacea Published Article attached

    Earlier this week I went to see Dr. Timothy Berger, who is the head of the dermatology department at, to discuss some issues I am having regarding my facial EM. He immediately told me about Dr. Martin Steinhoff who has come to America from Germany to study and treat what they are now calling neurogenic rosacea. They recently published a medical journal article on 14 patients and I wanted to share this with people, in case they have not seen the entire article. One very interesting note that I was not at all surprised to see was that many of the patients who suffer from this facial problem also seem to have migraines. I asked if anyone had anhidrosis, like me, and they said no, but Iíll bet some do and they either didnít ask them or they didnít know because they have not been tested. Itís a rare test to get and only a few medical centers even have the equipment. I had mine done at Mayo Clinic in Rochester, MN.

    Also, we talked a lot about meds that they have been finding helpful, many of which I have tried and either failed or could not take, and some I would like to re-try or try for the first time. Some of the meds discussed are not necessarily anything new when it comes to treating people with severe flushing and pain, but I will list them for those who may not be aware.

    Some of the meds suggested for treating neurogenic rosacea/facial EM: Lyrica, Cymbalta, Propranolol ER (extended release), Rifaximin, Protopic, Namenda (an Alzheimerís med). Other meds in the same classes may also be considered and he mentioned a medication for congestive heart disease used off label, but could not recall the name. He said they were differentiating between people who are in the stage of being flushed and hot all the time, versus those people who have the flushing, redness and pain going off and on. I thought that was interesting because when I first got this illness I was flushed and on fire all day and night with no breaks (that phase lasted about 8 to 9 years), and now that I have found a few meds that help, my flushing and pain waxes and wanes throughout the day and night. Dr. Berger also talked about using medications that target sodium channels versus those that target calcium channels, which people with EM have talked about for a long time now.

    So, personally, I am continuing with the meds I already take, such as long acting narcotics and migraine meds, but will be adding a few of these to see if they have any effect on my situation, which is significantly worse than most. I have found though, that even a small improvement can feel huge to me, so I have little to lose by trying. Then, in about 6 to 8 weeks, I will go back in to see Dr. Berger, as well as Dr. Steinhoff. Not sure what exactly to make of all this, but I am trying to stay open minded!

    If anyone has questions or wants to connect with me directly, feel free to email me at meg.edelson@prodigy.net. I am also happy to email the attached article to people directly if you cannot get it from this message - just email me directly and ask for the article.

    Best regards,
    MegAttachment 973

  2. #2
    Senior Member Brady Barrows's Avatar
    Join Date
    Jun 2005
    Location
    Centre, Alabama, USA
    Posts
    5,117

    Default Thanks for the article

    Meg,

    Thanks for finding the article. I love statements made by physicians that say that cause of rosacea is 'poorly understood' and have been collecting such statements as the one in this article which I have added to my list:

    "The cause of rosacea is complex, poorly understood, and likely multifactorial, with significant proposed contributions from dysfunctional cutaneous vasculature and innate immunity."

    I also like the conclusion of the article:

    "Because our understanding of this enigmatic subclass of rosacea is extremely limited, further research is clearly needed to better describe the underlying pathophysiologic characteristics and to identify additional effective treatment methods."

    The entire article is based upon the research of 14 rosacea patients. Obviously a great deal more research is needed as the article concluded. The article gives neurogenic rosacea the same status as the four subtypes of rosacea or the variants of rosacea (granulomatous rosacea, rosacea fulminans, and perioral dermatitis). While cases of what neruogenic rosacea is have been discussed in this forum by posters, the number is small compared to those who experience demodectic rosacea which isn't even mentioned in the article as a variant. A significant number of posters in this forum experience demodectic rosacea which is as valid a variant as neurogenic rosacea.

    I am sure this subtype of rosacea will no doubt get more press in the medical journals due to the work of these physicians on the subject. However, I find this statement needs a little more enlightenment:

    "We believe neuronal dysregulation is equally integral to rosacea pathogenesis. It may contribute to disease via various mechanisms, such as vasomotor instability, release of proinflammatory neuropeptides, and neuronal injury leading to perceived dysesthesias. In an individual patient, the relative importance of each of the mechanisms may differ, influencing both the spectrum ot clinical symptoms and the optimal treatment strategy."
    Brady Barrows
    Blog ē Join the RRDi



  3. #3
    Senior Member
    Join Date
    Jan 2008
    Posts
    931

    Default

    So from what i understand in the article, neurogenic rosacea is when you have lots of flushing, burning redness and swelling?

    So is that what i have???? I constantly flush (unless in a cool environment) and yes, fans or cooler air help my face flushing go down...

    Isn't that just what we all have as rosacea? Or at least most of us complain of flushing, there are those that are just red...

  4. #4
    Senior Member Brady Barrows's Avatar
    Join Date
    Jun 2005
    Location
    Centre, Alabama, USA
    Posts
    5,117

    Default What's the difference between neurogenic rosacea and other subtypes?

    Quote Originally Posted by snuffleupagus View Post
    So from what i understand in the article, neurogenic rosacea is when you have lots of flushing, burning redness and swelling?

    So is that what i have???? I constantly flush (unless in a cool environment) and yes, fans or cooler air help my face flushing go down...

    Isn't that just what we all have as rosacea? Or at least most of us complain of flushing, there are those that are just red...
    The differentiating factor for neurogenic rosacea is mentioned in the article:

    "A notably high percentage of patients had neurologic (43% [6 of 14]) or neuropsychiatric (50% [7 of 14]) conditions, including complex regional pain syndrome, essential tremor, depression, and obsessive-compulsive disorder.Neurovascular disorders, including headaches (71% [10 of 14]) and Raynaud phenomenon (29% [4 of 14]), as well as rheumatologic disorders (36% [5 of 14]), including lupus, rheumatoid arthritis, fibromyalgia, mixed connective tissue disease, and psoriatic arthritis, were also common."

    Not all rosacea sufferers have the above. That's the difference.

    The article proposed the following:

    "We propose that this group of patients with strikingly prominent neurologic symptoms represents an underrecognized subgroup of rosacea that we term neurogenic rosacea. By highlighting and formally naming this subgroup, we hope to increase awareness and recognition of these patients and aid the practicing dermatologist in their therapeutic management."
    Last edited by Brady Barrows; 30th September 2011 at 02:20 AM.
    Brady Barrows
    Blog ē Join the RRDi



  5. #5
    Member
    Join Date
    Nov 2012
    Posts
    57
    Country: Sweden

    Default Pain and aching

    I'm 27 and I got diagnosed with Rosacea this summer after a lot of visits to different doctors. It took them five months to give me the right diagnosis as my problems started with only pain and a little bit of swelling of my face. I was sent to neurologists and infection specialists. It was not until they gave me cortisol creams my face turned a little red and some red dots appeared. The first dermatologists i went to insisted that it couldn't be a skin disease as they saw nothing on my face. Everyone kept telling me that they couldn't see anything in my face. I however, could see that my face was pinker than normal and I definitely felt that something was going on inside my skin. Now about a year after it all began I've started to get more normal Rosacea symptoms such as more flushing and redness and I have noticed that it gets worse if i get exposed to Rosacea triggers, such as heat and spicy food, so I do have Rosacea. I no longer feel the pain i did a few months ago but my face is still aching and I ALWAYS feel very tense in my forehead. The weird thing is that the aching doesn't correlate with the flushing and it almost seems as if the aching is worse on the days when I'm pale. I do think that it's worse the days after bad flushing.

    I've been very confused and not sure If i really had Rosacea as I haven't read a whole lot about people experiencing pain without the redness and flushing. When people write about pain it mostly seems to be like a "burning pain" which is not really what I've experienced. But maybe I have this neurogenic subtype. Does anyone else have this subtype and if so, do you know of any good medications? I've tried Tetralysal, Rozex (gel and cream), Finacea, Skinoren, Cortimyc, Rocazol and Oracea. Only the last two have helped a bit. Now I'm on a strict Candida diet and I also take zink supplements and probiotics. I started to take magnesium yesterday too. My Rosacea has been a little bit better the last two weeks but it goes up and down. I know this thread is old but hopefully someone still reads it.

Similar Threads

  1. Replies: 43
    Last Post: 1st May 2014, 11:35 PM
  2. Attached Pictures - Anyone got anything similar?
    By Jono in forum Similar and co-existing conditions
    Replies: 8
    Last Post: 23rd January 2012, 06:17 AM
  3. $1000 Offer for the Best Article Published in the Journal of the RRDi
    By Brady Barrows in forum News, research articles and current affairs
    Replies: 4
    Last Post: 22nd December 2011, 06:45 PM
  4. My Rosacea Story Published in Chat Mag
    By princess_illusion in forum General rosacea questions
    Replies: 10
    Last Post: 13th April 2008, 08:08 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •