Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hi Patty, I remember that Dr. Nase posted about topical sodium cromolyn and some successes Drs. and Sorensen from LSU Medical Center had with it for inflammatory skin conditions. http://groups.yahoo.com/group/rosacea-support/message/2517 If Marjorie wouldn't mind, maybe she could email these physicians to find out if this topical is still being worked on or came to a dead end. Take care, Matija > Hi group: My ETS results are still great. My blushing and thermal > related triggers are gone. It has been a huge help. My facial skin > is much, much less red and inflammed. > > Now I can concentrate on the other problem I have always had with my > rosacea. I have always gotten hives on my arms, legs, torso and > face. My rosacea skin area is especially sensitive to them and they > show up more often in that area. I think this is due to the > instability of our mast cells in that area. Whenever I get the hives > on my face it is awful. They itch terribly and look ridiculous. I > have taken hydroxyzine for the hives and it has helped. During > allergy season I get worse, especially when I eat raw food; > especially ANY fruits. Sounds bizarre, but it's been going on for 6 > years. Anyway, I recently tried putting nasalcrom (a non-steriodal > mast cell stabilizer normally for the nose-a nose spray) on my right > cheek. I did this for about 3 weeks. Yesterday I ate too much fruit > and had a breakout of hives. Normally the hives are very symmetrical, > but this time they were mostly on the left side, which makes me think > the nasalcrom is working on the right side. So my question is, does > anyone know if its possible for nasalcrom to actually work in this > way? > > Thanks! Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 >> >>> Now I can concentrate on the other problem I have always had with >> my >>> rosacea. I have always gotten hives on my arms, legs, torso and >>> face. My rosacea skin area is especially sensitive to them and >> they >>> show up more often in that area. I think this is due to the >>> instability of our mast cells in that area. Whenever I get the >> hives >>> on my face it is awful. They itch terribly and look ridiculous. > I >>> have taken hydroxyzine for the hives and it has helped. During >>> allergy season I get worse, especially when I eat raw food; >>> especially ANY fruits. Sounds bizarre, but it's been going on > for >> 6 >>> years. It sounds like food allergies or at the least an allergic reaction. I'm not trying to be flip, but if you know that raw food/fruit causes hives why do you eat them? Perhaps I've missed something here...Adjusting your diet sounds a whole lot better to me than taking medications to handle recurrent symptoms. You might find relief by following an avoidance diet for a while and then slowly adding certain foods back in to isolate reactions. carrie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Matija, I read Dr. Nase's 1999 post. Attributing the inflammatory and vasodilatory effects of rosacea to mast cell activation is an intriguing idea, though I would expect rosacea to have a somewhat different presentation and respond more uniformly to certain medications. But perhaps mast cell activation is a prominent feature in a subset of rosaceans, or a low key player in mainstream rosacea? Certainly it may play a role in those with a component of contact dermatitis, as local mast cell activation does in other allergy- mediated disorders. Intriguing, but I need convincing that it's a significant culprit in mainstream rosacea. I checked the main pharmaceutical database, Drugdex, and it said that topical cromolyn was not found effective in adults with atropic dermatitis (which would seem the best indication for topical cromolyn). It sounds like topical application was found ineffective or inconsistent in stabilizing skin mast cells; there are no topical cromolyn preparations available in the US. Evidence in children was more hopeful, but primarily as an adjunct to hydrocortisone cream (still the gold standard, despite all its problems), and again there are no preparations sold in the US. According to the Web, Dr. and Sorensen are or were pediatricians/allergists at LSU Medical Center, which explains why they were testing topical cromolyn. I may be missing something, but I don't see how contacting them today will be of practical benefit to us rosaceans. Patty, your symptoms don't sound bizarre to me; but as you describe them, they sound like an allergic reaction, not rosacea; even though the rash appears disproportionally on your face, that's not uncommon in allergic reactions. If so, you might consider talking to your doctor about better antihistamine (H1 and H2 blocker) therapy, especially since you found Atarax helpful after-the-fact. If that doesn't help, then you and your doctor might consider a trial of oral cromolyn; that's used for managing the GI symptoms of food allergies in adults, but has some systemic effects in stablizing skin mast cells in children. I've never prescribed it, but it's taken as a liquid four times a day, so it's a bit of a hassle compared to antihistamine therapy. Significantly, I've not seen any side-by-side tests to know whether it would be more effective for allergic skin reactions than H1 and H2 blocker therapy, which are safe and effective. I enjoy learning about and discussing new research, although I'm very aware of my limitations in this regard. I guess it's obvious I don't share the enthusiasm for all these new therapies that seem to characterize this group. In my experience, scientific research is wonderfully logical and creative, and designing and executing research naturally calls forth its own enthusiasm; everyone is always hopeful the next study will be " it. " But the more experience one has in science, law, philosophy, investigative journalism, and other fields, the more one knows that " making a case " doesn't make it so. Assertions and common sense logic are literally a dime a dozen -- the real money is in the proof (by which I mean good proof). Marjorie Marjorie Lazoff, MD > Hi Patty, > > I remember that Dr. Nase posted about topical sodium cromolyn and > some successes Drs. and Sorensen from LSU Medical Center had > with it for inflammatory skin conditions. > > http://groups.yahoo.com/group/rosacea-support/message/2517 > > If Marjorie wouldn't mind, maybe she could email these physicians to > find out if this topical is still being worked on or came to a dead > end. > > Take care, > Matija > > > > > > Hi group: My ETS results are still great. My blushing and > thermal > > related triggers are gone. It has been a huge help. My facial > skin > > is much, much less red and inflammed. > > > > Now I can concentrate on the other problem I have always had with > my > > rosacea. I have always gotten hives on my arms, legs, torso and > > face. My rosacea skin area is especially sensitive to them and > they > > show up more often in that area. I think this is due to the > > instability of our mast cells in that area. Whenever I get the > hives > > on my face it is awful. They itch terribly and look ridiculous. I > > have taken hydroxyzine for the hives and it has helped. During > > allergy season I get worse, especially when I eat raw food; > > especially ANY fruits. Sounds bizarre, but it's been going on for > 6 > > years. Anyway, I recently tried putting nasalcrom (a non- steriodal > > mast cell stabilizer normally for the nose-a nose spray) on my > right > > cheek. I did this for about 3 weeks. Yesterday I ate too much > fruit > > and had a breakout of hives. Normally the hives are very > symmetrical, > > but this time they were mostly on the left side, which makes me > think > > the nasalcrom is working on the right side. So my question is, > does > > anyone know if its possible for nasalcrom to actually work in this > > way? > > > > Thanks! Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Matija, I read Dr. Nase's 1999 post. Attributing the inflammatory and vasodilatory effects of rosacea to mast cell activation is an intriguing idea, though I would expect rosacea to have a somewhat different presentation and respond more uniformly to certain medications. But perhaps mast cell activation is a prominent feature in a subset of rosaceans, or a low key player in mainstream rosacea? Certainly it may play a role in those with a component of contact dermatitis, as local mast cell activation does in other allergy- mediated disorders. Intriguing, but I need convincing that it's a significant culprit in mainstream rosacea. I checked the main pharmaceutical database, Drugdex, and it said that topical cromolyn was not found effective in adults with atropic dermatitis (which would seem the best indication for topical cromolyn). It sounds like topical application was found ineffective or inconsistent in stabilizing skin mast cells; there are no topical cromolyn preparations available in the US. Evidence in children was more hopeful, but primarily as an adjunct to hydrocortisone cream (still the gold standard, despite all its problems), and again there are no preparations sold in the US. According to the Web, Dr. and Sorensen are or were pediatricians/allergists at LSU Medical Center, which explains why they were testing topical cromolyn. I may be missing something, but I don't see how contacting them today will be of practical benefit to us rosaceans. Patty, your symptoms don't sound bizarre to me; but as you describe them, they sound like an allergic reaction, not rosacea; even though the rash appears disproportionally on your face, that's not uncommon in allergic reactions. If so, you might consider talking to your doctor about better antihistamine (H1 and H2 blocker) therapy, especially since you found Atarax helpful after-the-fact. If that doesn't help, then you and your doctor might consider a trial of oral cromolyn; that's used for managing the GI symptoms of food allergies in adults, but has some systemic effects in stablizing skin mast cells in children. I've never prescribed it, but it's taken as a liquid four times a day, so it's a bit of a hassle compared to antihistamine therapy. Significantly, I've not seen any side-by-side tests to know whether it would be more effective for allergic skin reactions than H1 and H2 blocker therapy, which are safe and effective. I enjoy learning about and discussing new research, although I'm very aware of my limitations in this regard. I guess it's obvious I don't share the enthusiasm for all these new therapies that seem to characterize this group. In my experience, scientific research is wonderfully logical and creative, and designing and executing research naturally calls forth its own enthusiasm; everyone is always hopeful the next study will be " it. " But the more experience one has in science, law, philosophy, investigative journalism, and other fields, the more one knows that " making a case " doesn't make it so. Assertions and common sense logic are literally a dime a dozen -- the real money is in the proof (by which I mean good proof). Marjorie Marjorie Lazoff, MD > Hi Patty, > > I remember that Dr. Nase posted about topical sodium cromolyn and > some successes Drs. and Sorensen from LSU Medical Center had > with it for inflammatory skin conditions. > > http://groups.yahoo.com/group/rosacea-support/message/2517 > > If Marjorie wouldn't mind, maybe she could email these physicians to > find out if this topical is still being worked on or came to a dead > end. > > Take care, > Matija > > > > > > Hi group: My ETS results are still great. My blushing and > thermal > > related triggers are gone. It has been a huge help. My facial > skin > > is much, much less red and inflammed. > > > > Now I can concentrate on the other problem I have always had with > my > > rosacea. I have always gotten hives on my arms, legs, torso and > > face. My rosacea skin area is especially sensitive to them and > they > > show up more often in that area. I think this is due to the > > instability of our mast cells in that area. Whenever I get the > hives > > on my face it is awful. They itch terribly and look ridiculous. I > > have taken hydroxyzine for the hives and it has helped. During > > allergy season I get worse, especially when I eat raw food; > > especially ANY fruits. Sounds bizarre, but it's been going on for > 6 > > years. Anyway, I recently tried putting nasalcrom (a non- steriodal > > mast cell stabilizer normally for the nose-a nose spray) on my > right > > cheek. I did this for about 3 weeks. Yesterday I ate too much > fruit > > and had a breakout of hives. Normally the hives are very > symmetrical, > > but this time they were mostly on the left side, which makes me > think > > the nasalcrom is working on the right side. So my question is, > does > > anyone know if its possible for nasalcrom to actually work in this > > way? > > > > Thanks! Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Marjorie, Thanks for your thorough answer. I didn't know about Drugex, the pharmaceutical database, and what this database contains. You don't have to contact Drs. and Sorensen. I was interested in the progress, or lack thereof, for the topical sodium cromolyn and inflammatory skin condition that Dr. Nase mentioned in that message. It's good to know more details about this as we hear things or read articles that say the next big thing is coming for skin conditions. Then, you hear nothing about it. You've mentioned why this happens in past messages, and it's because the new thing didn't work correctly or it's just a marketing ploy. I appreciate your honesty! As an aside, Marjorie, do any foods cause you to flare? I was just curious about that. Also, do you have any guesses as to why certain foods can trigger rosacea flares in some people? Thanks! Matija > > > Hi group: My ETS results are still great. My blushing and > > thermal > > > related triggers are gone. It has been a huge help. My facial > > skin > > > is much, much less red and inflammed. > > > > > > Now I can concentrate on the other problem I have always had with > > my > > > rosacea. I have always gotten hives on my arms, legs, torso and > > > face. My rosacea skin area is especially sensitive to them and > > they > > > show up more often in that area. I think this is due to the > > > instability of our mast cells in that area. Whenever I get the > > hives > > > on my face it is awful. They itch terribly and look ridiculous. > I > > > have taken hydroxyzine for the hives and it has helped. During > > > allergy season I get worse, especially when I eat raw food; > > > especially ANY fruits. Sounds bizarre, but it's been going on > for > > 6 > > > years. Anyway, I recently tried putting nasalcrom (a non- > steriodal > > > mast cell stabilizer normally for the nose-a nose spray) on my > > right > > > cheek. I did this for about 3 weeks. Yesterday I ate too much > > fruit > > > and had a breakout of hives. Normally the hives are very > > symmetrical, > > > but this time they were mostly on the left side, which makes me > > think > > > the nasalcrom is working on the right side. So my question is, > > does > > > anyone know if its possible for nasalcrom to actually work in > this > > > way? > > > > > > Thanks! Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 > I didn't know about Drugdex, the > pharmaceutical database, and what this database contains. Matija, Drugdex is a huge well-respected electronic database (microfiche before that, it's been around for decades) that's available to hospital pharmacies for pharmacists. It covers research, clinical minutia, pharmacokinetics, interactions, everything on a particular medication. It was created and is maintained quarterly by a private company, Micromedex. > As an aside, Marjorie, do any foods cause you to flare? I was just > curious about that. Also, do you have any guesses as to why certain > foods can trigger rosacea flares in some people? Nope, my only triggers are my computer monitor (in low humidity -- an important discovery I made here) and my period. It's well known that certain foods/alcohol/drugs cause flushing in rosaceans and non-rosaceans (though certainly disproportionally in rosaceans), and food allergies and perhaps intolerances cause allergic skin reactions (people with rosacea are at least as likely as the general population to suffer from food intolerances and allergies). Their mechanisms are fairly well understood, I believe. To me those aren't necessarily rosacea flares, but I see that it depends how each person self-assesses their own condition. I don't know if there's a separate food-related reaction unique and characteristic of rosacea only. I don't know the mechanism behind *any* rosacea flare. Sorry, no clear answers -- I'm learning along with everyone else. Marjorie Marjorie Lazoff, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 > I didn't know about Drugdex, the > pharmaceutical database, and what this database contains. Matija, Drugdex is a huge well-respected electronic database (microfiche before that, it's been around for decades) that's available to hospital pharmacies for pharmacists. It covers research, clinical minutia, pharmacokinetics, interactions, everything on a particular medication. It was created and is maintained quarterly by a private company, Micromedex. > As an aside, Marjorie, do any foods cause you to flare? I was just > curious about that. Also, do you have any guesses as to why certain > foods can trigger rosacea flares in some people? Nope, my only triggers are my computer monitor (in low humidity -- an important discovery I made here) and my period. It's well known that certain foods/alcohol/drugs cause flushing in rosaceans and non-rosaceans (though certainly disproportionally in rosaceans), and food allergies and perhaps intolerances cause allergic skin reactions (people with rosacea are at least as likely as the general population to suffer from food intolerances and allergies). Their mechanisms are fairly well understood, I believe. To me those aren't necessarily rosacea flares, but I see that it depends how each person self-assesses their own condition. I don't know if there's a separate food-related reaction unique and characteristic of rosacea only. I don't know the mechanism behind *any* rosacea flare. Sorry, no clear answers -- I'm learning along with everyone else. Marjorie Marjorie Lazoff, MD Quote Link to comment Share on other sites More sharing options...
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