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Thread: Nose Swelling, big pores, phymous tissue--please post!

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  1. #1
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    Default Nose Swelling, big pores, phymous tissue--please post!

    Hi. I've had phymous rosacea for the last two years. It really sucked at first, but now it's going better. I really wish there were more people talking about it when I got it. The information was quite sparse. Can everybody with the aforementioned symptoms please post? It would help many people, including us. I'll post a bit on what helped and hurt me and my symptoms.

    Symptoms: Large pores, scar tissue bulidup around pores, swelling on and around nose, pain and numbness of nose. Not much redness, and no pimples.

    What helps me: retinoids (Differin) once or twice per week, minocycline, low-dose accutane, anti-histamines (allegra and QuerCelain), diet and exercise with herbal supplements (white willow bark, boswellia), GoodSkin lotion and other thin serums, exfoliators.

    What hurts me: Hyaluronic acid, glycerin, shea butter, thick creams, Epidermal Growth Factor.

    As you can see it's basically the opposite of what most rosacea suffers deal with: an epidermis that's too thick, not too thin.
    That's about it for me. I'm very curious to hear what helped/hurt the rest of you.

  2. #2
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    Tmon12,

    Thanks for posting. I was diagnosed with early stage Rhinophyma over the Summer. Our symptons sound very similar. I
    have never heard of phymous rosacea, are you sure it isn't Rhinophyma ?

    Symptons: Top half of nose has large pores, scarring, 3 ice pick scars, scar tissue buildup, swelling, increased sebum production.
    I dont have any pain or numbness. I do get inflamed capillaries from time to time.

    Triggers: I have histamine response to certain foods (Sugar, canned fish, some oils, citrus, others), Excessive sun .
    Food is the worst trigger ! Nose becomes inflamed, oily, bulbous, pimply

    Treatments (laser): CO2 Laser for reshaping and trimming extra tissue build up. Diolite laser for capillaries.

    Treatments (creams): Low dose Retin A has been the best (every other night). Also use Finacea on spot basis every other night.

    Treatments (other): antihistamines help, I take an otc every other day.

    These didn't work: Metrogel, Antibiotics, Cleansers, Clenia (worked for 7-8 weeks only)


    Note: CO2 Laser was awesome, but the recovery was brutal (a solid 2 months).



    Tmon, have you tried any laser treatments ??

  3. #3
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    Default Thanks for the post!

    Quote Originally Posted by gobutkus View Post
    Tmon12,

    Thanks for posting. I was diagnosed with early stage Rhinophyma over the Summer. Our symptons sound very similar. I
    have never heard of phymous rosacea, are you sure it isn't Rhinophyma ?

    Symptons: Top half of nose has large pores, scarring, 3 ice pick scars, scar tissue buildup, swelling, increased sebum production.
    I dont have any pain or numbness. I do get inflamed capillaries from time to time.

    Triggers: I have histamine response to certain foods (Sugar, canned fish, some oils, citrus, others), Excessive sun .
    Food is the worst trigger ! Nose becomes inflamed, oily, bulbous, pimply

    Treatments (laser): CO2 Laser for reshaping and trimming extra tissue build up. Diolite laser for capillaries.

    Treatments (creams): Low dose Retin A has been the best (every other night). Also use Finacea on spot basis every other night.

    Treatments (other): antihistamines help, I take an otc every other day.

    These didn't work: Metrogel, Antibiotics, Cleansers, Clenia (worked for 7-8 weeks only)


    Note: CO2 Laser was awesome, but the recovery was brutal (a solid 2 months).



    Tmon, have you tried any laser treatments ??
    First of all, thanks for your awesome post! Second, no I haven't tried laser treatments. I have thought of rhinoplasty/surgery/laser, though. It's so cool to hear what you said about what works best because I was totally thinking about alternating between my homemade "finacea" and Differin at night. I also take an antihistamine, but I take it every day. It's basically allegra 180, but the generic kind (why waste money).

    Metrogel also didn't work for me...it made me breakout at first, worse than the Differen...much worse. It was too much to bear so I stopped after a few nights and put it into the trashbin. And the antibiotics helped only with the swelling and pain, not the phymous tissue. But they did help with something, at least.

    The reason I call it phymous rosacea is because it can affect more than the nose. I've got it on my left cheek too, and I've heard about others who have it on their forehead, ears, etc.

    Questions:
    Can you recommend surgery, like how you picked the doc, the results, downsides, etc?
    Did the sulfer (Clenia) make you more puffy? That happened to me...but it worked great at first.

  4. #4
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    Hi:
    I have struggled with phymatous rosacea for years. I have swelling on my nose, cheeks, chin, eyelids, and forehead. The worst thing I can do for my face is to eat products containing gluten. I also react badly to spicy foods, smoked foods, and tomatoes. The things that work best for me are: an over the counter antihistamine twice per day and a quercetin/bromelain supplement with meals. If I am careful about what I eat and take the aforementioned remedies, my face looks pretty good. I will probably get IPL some day on the end of my nose because I have some permanent veins that show there. I take after my paternal grandpa in that respect, he had a lot of visible veins on his face as he got older.
    Regards
    Queta
    "Do not go where the path may lead, go instead where there is no path and leave a trail."
    Ralph Waldo Emerson

  5. #5
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    Tmon12,
    This clinical research piece convinced me that the way to go for Rhinophyma is Classical CO2 Laser:
    http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract
    So I had it done 8/30/2011. Previous to my decision I was very pleased with my Dermatologist and he has conducted
    several hundred of these CO2 Laser surgeries. Here are positive/negative of results:
    Positive: Nose was reshaped providing a more natural smooth appearance, a slight overall reduction in size, some of
    the scarring (not the ice picks) was reduced,
    Negative: Bloody/scabby recovery for 2 weeks (needs to be covered)- then redness for another 5-6 weeks. This is the
    old classical laser first introduced in the 1990's. It is not a common procedure so most doctors have discontinued moving
    onto the more modern lasers.
    Yes/No: If you are able to withstand the recovery period I highly recommend. Cost $300

    Queta: I use Diolite Laser (in office, no downtime) for the capillaries. Very successful--they disappear. Need follow up 1x-2x
    per year. Cost $100

    tmon/Queta: Interesting that all of us have histamine responses to food and react positive to antihistamine drugs !! I have the quercetin
    but haven't tried yet (I will this week)

  6. #6
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    Default

    Hey, Queta! Nice to hear from you again. I also have a problem with gluten, sugar, etc. Also heat is a big problem for me. Oddly, antihistamines seem to help with that. Does that make any sense? I also eat something close to the "ph-diet" (although, I'm skeptical of its claims) and that works for some reason. I guess that we react to the same triggers as most with rosacea and some of the same things help...but ours is still special in many ways. Do you have any scar tissue or just swelling? I would love to know what you do for the scar tissue if you have any.

    Gobutkus, thanks for the response. I definitely recommend upping the antihistamines too. My derm scratched my arm and it puffed up and got white and apparently that's some kind of histamine test. Ever since then I've taken large amounts of antihistamine per day and the swelling went down like 80%. About the laser, did you have any tissue grow back, or did the retinoids/azelaic acid keep it down? I have a tiny amount of tissue to remove but I'm afraid that it grows back faster after...was that true for you?

  7. #7
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    Country: Germany

    Default Thickening skin around nose but doctors swear it's not rhinophyma

    Quote Originally Posted by Tmon912 View Post
    Hi. I've had phymous rosacea for the last two years. It really sucked at first, but now it's going better. I really wish there were more people talking about it when I got it. The information was quite sparse. Can everybody with the aforementioned symptoms please post? It would help many people, including us. I'll post a bit on what helped and hurt me and my symptoms.

    Symptoms: Large pores, scar tissue bulidup around pores, swelling on and around nose, pain and numbness of nose. Not much redness, and no pimples.

    What helps me: retinoids (Differin) once or twice per week, minocycline, low-dose accutane, anti-histamines (allegra and QuerCelain), diet and exercise with herbal supplements (white willow bark, boswellia), GoodSkin lotion and other thin serums, exfoliators.

    What hurts me: Hyaluronic acid, glycerin, shea butter, thick creams, Epidermal Growth Factor.

    As you can see it's basically the opposite of what most rosacea suffers deal with: an epidermis that's too thick, not too thin.
    That's about it for me. I'm very curious to hear what helped/hurt the rest of you.
    I am a 41 year old woman and for the past 2 years, the skin has been thickening around my nostrils. It is as if large, deep, diffuse lumps are filling in the cavities which used to define my nostrils. It is happening slowly and isn't yet noticeable to people who aren't familiar with what my nose used to look like, but it is definitely happening! I live in Germany and have seen several dermatologists, all of whom have basically blown me off. I have been told it's nothing, just normal ageing, a sebaceous cyst, sebaceous hyperplasia, and nothing again. Every time I see a different doctor they tell me something different and none of them are willing to try any medications except for the one who thought it was sebaceous hyperplasia and prescribed MetroGel. I feel like MetroGel may be preventing it from getting much worse, but it has had no minimizing effect. I was on heavy antibiotics for a broken arm for a couple of weeks and I actually felt like that helped a bit, but I was taken off those, of course.

    The reactions of the doctors here tells me I have something uncommon and difficult to diagnose. I have only a touch of rosacea (some broken blood vessels on my nose) but it does run in the family. I also have somewhat enlarged pores, but, for the most part, I would say the surface of my skin looks pretty normal. Its just these deep lumps that are concerning. In certain light, my nose definitely has a lumpy appearance already and I have no reason to believe the growth is at an end.

    Does any of this sound like your early phymous rosacea? I don't have any pain and the lumps don't vary in size day to day - they are just growing steadily.

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