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  • 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
    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 ??

    Comment


    • #3
      Thanks for the post!

      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.

      Comment


      • #4
        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

        Comment


        • #5
          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)

          Comment


          • #6
            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?

            Comment


            • #7
              tmon912. Thanks for the post. Have been looking for a thread like this for some time.
              Have been considering the laser surgery since mid last year and have had two
              consultations with two separate clinics. Was not happy with the explanation of
              recovery. If possible could you give more detail. Were you able to go to work etc.
              How many trips to clinic for dressings, medications etc.

              Comment


              • #8
                Originally posted by maidenrod View Post
                tmon912. Thanks for the post. Have been looking for a thread like this for some time.
                Have been considering the laser surgery since mid last year and have had two
                consultations with two separate clinics. Was not happy with the explanation of
                recovery. If possible could you give more detail. Were you able to go to work etc.
                How many trips to clinic for dressings, medications etc.
                Ah yes, I'm looking for some information of that sort too. I'm sure our friend Gobutkus will help us out with those answers when he's back online. BTW, would you mind elaborating on your symptoms, experience, etc?

                Comment


                • #9
                  Might consider this post.
                  Brady Barrows
                  Blog - Join the RRDi


                  Comment


                  • #10
                    Ok guys (and gals) here is what I wrote on another forum regarding the recovery from CO2 Laser :

                    Procedure : 30 minutes--nose is 100% numb, no pain, covered in a bandage (looks like a broken nose)
                    I had procedure done on Friday morning . Off from work until following 2nd Monday. 10 full days.
                    No medication (retin a ) on nose for 30 days.

                    Today is day #3.
                    My nose is red, oozing and scabbing--no swelling, no pain . All expected.
                    I am using ice compression(water + vinegar) every 2 hours--ice for the swelling, vinegar to kill any bacteria .
                    I can see little bits of pink skin around the edges coming thru already...this is very encouraging
                    Doctor visit, Day #5
                    Nose appearance: still scabbing and oozing, but reducing each day. Pinkish new skin coming in more and
                    more each day. Painless, although some itchiness.Its sort of similar to have a "scabbed" knee as a kid ---
                    but on the nose....
                    Doctor visit, Day #10
                    Nose appearance: All scabbing has cleared. Mostly just a mix of new pink skin coming in + still healing red skin.
                    Today is my first public appearance day (without a bandage on nose) and also my first exercise day. Overall
                    appearance is amazing----nose looks skinnier, smoother/rounded, and scars have less depth. The areas where
                    there was 'thickening of the skin' , now looks more thinner.
                    2 Week update:
                    I am now fully integrated into regular life cycle: work, exercise, lunches out, etc...
                    Redness remains but goes down a tad each day---some dry spots.Still looks a little rough.
                    3- 3.5 weeks post procedure Update:
                    *Still noticeably red on nose , some dryness and slight crusting.
                    *Blackheads came back with a flurry ---amazing to see how quickly they developed and spread. I was allowed to
                    start back up on Finacea and Retin A which virtually 'wiped out' the blackheads in 3-4 days.This confirms my April
                    suggestion that Finacea works particularly well on blackheads.
                    * I have lost some of my early enthusiasm , but I still see greatly improved 'depth' of scarring and a more
                    streamlined and even appearance of nose......just waiting for the redness to fade away.
                    Time will tell folks, recovery on this procedure moves at a snails pace (this was the biggest complaint on the forums).

                    Final analysis and 'rating'
                    Classical CO2 Laser surgery

                    Purpose of surgery: To remove layers of 'skin thickening' found on the top half of nose (early stage Rhinophyma) , reduce appearance of acne scarring,and smooth out uneven surface.
                    Why CO2 ? : The use of the 'classical' CO2 Laser has an effective and proven track record (several clinical studies) of treating Rhinophyma. A majority of the studies I found showed a very low risk of side effects and high patient satisfaction after 12 months post surgery. CO2 Laser is considered to be among the first lasers to be used successfully on patients. Outside of Rhinophyma patients, most Doctors have ceased the use of the classical CO2 laser. Patients seem to favor today's modern lasers, primarily because they require 1/3 the recovery time.

                    Procedure: In office under 30 minutes.No pain, no inconvenience. Cost $300

                    Recovery: Versus today's modern laser (I had Pixel earlier in the year), recovery moves at a snails pace. Scabbing, oozing, bleeding thru 3-4 days.

                    Scabbing and more recovery thru 9 days. Makeup (for women) starting at day 10. I wore nose bandage for 3 weeks telling most people who asked that I was elbowed' playing basketball. Redness has begun to really fade 5+ weeks, but it is still there. They say full recovery by 6 weeks, with some mild redness. I agree.

                    Outcome: Nose is more streamlined and surface is smoother. Skin thickening was reduced. Surprisingly decent job on the acne scarring (which were pretty deep). Unfortunately no help for the enlarged skin pores which seemed to have return to there old form (this is not a surprise).

                    Overall rating: 10 out of 10 for anybody with skin thickening. It works. The downside is recovery time needed as mentioned and it could be difficult to find Doctor who still has this 'classical' laser.

                    Comment


                    • #11
                      Originally posted by gobutkus View Post
                      Ok guys (and gals) here is what I wrote on another forum regarding the recovery from CO2 Laser :

                      Procedure : 30 minutes--nose is 100% numb, no pain, covered in a bandage (looks like a broken nose)
                      I had procedure done on Friday morning . Off from work until following 2nd Monday. 10 full days.
                      No medication (retin a ) on nose for 30 days.

                      Today is day #3.
                      My nose is red, oozing and scabbing--no swelling, no pain . All expected.
                      I am using ice compression(water + vinegar) every 2 hours--ice for the swelling, vinegar to kill any bacteria .
                      I can see little bits of pink skin around the edges coming thru already...this is very encouraging
                      Doctor visit, Day #5
                      Nose appearance: still scabbing and oozing, but reducing each day. Pinkish new skin coming in more and
                      more each day. Painless, although some itchiness.Its sort of similar to have a "scabbed" knee as a kid ---
                      but on the nose....
                      Doctor visit, Day #10
                      Nose appearance: All scabbing has cleared. Mostly just a mix of new pink skin coming in + still healing red skin.
                      Today is my first public appearance day (without a bandage on nose) and also my first exercise day. Overall
                      appearance is amazing----nose looks skinnier, smoother/rounded, and scars have less depth. The areas where
                      there was 'thickening of the skin' , now looks more thinner.
                      2 Week update:
                      I am now fully integrated into regular life cycle: work, exercise, lunches out, etc...
                      Redness remains but goes down a tad each day---some dry spots.Still looks a little rough.
                      3- 3.5 weeks post procedure Update:
                      *Still noticeably red on nose , some dryness and slight crusting.
                      *Blackheads came back with a flurry ---amazing to see how quickly they developed and spread. I was allowed to
                      start back up on Finacea and Retin A which virtually 'wiped out' the blackheads in 3-4 days.This confirms my April
                      suggestion that Finacea works particularly well on blackheads.
                      * I have lost some of my early enthusiasm , but I still see greatly improved 'depth' of scarring and a more
                      streamlined and even appearance of nose......just waiting for the redness to fade away.
                      Time will tell folks, recovery on this procedure moves at a snails pace (this was the biggest complaint on the forums).

                      Final analysis and 'rating'
                      Classical CO2 Laser surgery

                      Purpose of surgery: To remove layers of 'skin thickening' found on the top half of nose (early stage Rhinophyma) , reduce appearance of acne scarring,and smooth out uneven surface.
                      Why CO2 ? : The use of the 'classical' CO2 Laser has an effective and proven track record (several clinical studies) of treating Rhinophyma. A majority of the studies I found showed a very low risk of side effects and high patient satisfaction after 12 months post surgery. CO2 Laser is considered to be among the first lasers to be used successfully on patients. Outside of Rhinophyma patients, most Doctors have ceased the use of the classical CO2 laser. Patients seem to favor today's modern lasers, primarily because they require 1/3 the recovery time.

                      Procedure: In office under 30 minutes.No pain, no inconvenience. Cost $300

                      Recovery: Versus today's modern laser (I had Pixel earlier in the year), recovery moves at a snails pace. Scabbing, oozing, bleeding thru 3-4 days.

                      Scabbing and more recovery thru 9 days. Makeup (for women) starting at day 10. I wore nose bandage for 3 weeks telling most people who asked that I was elbowed' playing basketball. Redness has begun to really fade 5+ weeks, but it is still there. They say full recovery by 6 weeks, with some mild redness. I agree.

                      Outcome: Nose is more streamlined and surface is smoother. Skin thickening was reduced. Surprisingly decent job on the acne scarring (which were pretty deep). Unfortunately no help for the enlarged skin pores which seemed to have return to there old form (this is not a surprise).

                      Overall rating: 10 out of 10 for anybody with skin thickening. It works. The downside is recovery time needed as mentioned and it could be difficult to find Doctor who still has this 'classical' laser.

                      Comment


                      • #12
                        Hi Gobutkus,

                        Thanks for your extensive report. The information in your report was
                        not disclosed at my two clinic visits. I will now be able to better prepare
                        for the recovery with work etc. Still have to choose a clinic so still
                        some way off from improving my situation. Once again thanks.

                        Comment


                        • #13
                          Controling it after surgery

                          Thanks, Gobutkus! Can you also let us know if you're able to control it now with retinoids, etc? That would be awesome. I'm able to control it that way now, but I don't know how it would be after surgery....worse?...better?

                          Comment


                          • #14
                            Tmon912,

                            My daily regiment has become very simple.I am in maintenance mode.
                            M,W,F,Sa : Retin A (.025%) apply at night
                            Tu,Thu: Finacea apply at night
                            Clariton antihistamine 3-4 times a week
                            Cold water wash am + pm


                            Post surgery, things are slightly better. I feel I have made a 70% overall improvement in facial
                            complexion since I started treatment this time last year. The 30% that remains are small p&p's
                            and an occasional flare up induced by poor eating---this to me, I can live with. Post surgery I
                            think about it less, because I have done everything I can. I still have to adhere to a clean diet
                            or else I get nailed with a flare up....again, this I can live with.


                            For me, the surgery was the last straw I picked to break the camels back. I have a really good mindset
                            at the moment.

                            take care

                            Comment


                            • #15
                              "The 30% that remains are small p&p's
                              and an occasional flare up induced by poor eating---this to me, I can live with. Post surgery I
                              think about it less, because I have done everything I can. "

                              I TOTALLY understand, gobutkus. I think that one of the most important things mentally for this disease is knowing you've done all you can. That way we can walk around town without guilt and tell people who don't like our imperfect looks to accept it or **** off. I'm going to try the surgery thing and a maintenance program similar to yours within the first half of this year. Thanks for all your posts.

                              Comment

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