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  • rhinophyma questions?

    I am pretty sure I have the beginnings of this.

    My nose has been sore lately and when I wake up it is reddish and swollen (feels like I got a ball in the face if that ever happened to anyone in gym class). I have also noticed a small bump on one side of my nose just before the tip but on the side. It has been there for a few years and is not really coloured although when my nose gets reddish it does also get red.

    I don't know much about this and take it that this is the final stage of Rosacea so am wondering how I could have the beginings now...but I know Rosacea is not text book.

    Anyways here are my questions for anyone who can help.

    1. Accutane - I read that this is the best treatment. I was on Accutane for 8 months @ 40mg/daily and finished almost a year ago. Yes, during that time it did not bother me at all and my nose looked great and felt great. I cannot go on this drug again however, it made my flushing worse and I have dry skin still on my body from this medication. I am wondering though, if Accutane is the treatment of choice, does that mean that this will not develop too severely for me since I was on it for 8 months @ 40mg? Surely you cannot be on Accutane for good...and if Accutane shrinks the sebacous glands and hyperactive sebacous glands it was causes rhinophyma, then perhps it will not get too bad?

    2. Metrogel .75% - I just received this the other week and started using it on my nose. Will this help with early stages and/or preventing rhinophyma?

    3. What other medications are useful? I read Antibiotics are useful, is that true? I may ask for BActrim again. I was on antibiotics for a 2 years prior to Accutane and have given myself a much needed break from them these past few months.

    4. Any other treatments? I basically would like to prevent things from progressing any further as this can be really disfiguring (from images I have seen).

    5. I also had IPL a couple years back but that was also a bad idea and my skin did not react well to it, so lasers are out (also since I have only been off Accutane for 10 months and they say to wait at least 1 year).

    Thanks

  • #2
    Here is something from feedblitz that may help you:

    http://rosacea-support.org/how-to-cu...llen-nose.html

    The red swollen nose of rosacea is a much hated symptom. I know that this was the symptom that I despised most and indeed drove me 10 years ago to start to look for good information about how to treat rosacea. Incidentally, this drive lead to the creation of the internet based Rosacea Support Group in 1998.
    I hated that I looked like I had adult acne and a constant sun-burned nose. Especially as I have somewhat fair skin, a red nose stood out a mile away.
    There has been quite a lot of interest in a article I wrote titled “how to cure a red face (facial erythema or redness)“. That article gave some tips on how to deal with general facial redness. What about a red and swollen nose ? What can you do to treat a red rosacea nose ? Read on for some suggestions.
    A rosacea nose has the extra complication that one might end up suffering from rhinophyma. Although rare, rhinophyma is also a much hated symptom of rosacea. While we don’t know for sure how any particular rosacea sufferer’s symptoms will progress, reducing your inflammation and flushing is a good start to winning the battle.
    Here are my top tips for dealing with the red nose of rosacea.
    Rosacea-LTD III

    Rosacea-LTD was one of my first discoveries after starting to look for treatments on the internet in 1998. They consist of compressed disks of sulfur and various salts. You wet your face and glide them over the skin, leaving a thin film. For me these `disks’ did a great job of reducing the papules and pustules on my nose. I could feel them shrinking all those acne looking lumps and bumps. As much of my redness was associated with my papules and pustules, this treatment was a good step in the right direction. I continued to use rosacea-ltd for several years.
    Disclaimer: rosacea-ltd is a site sponsor of rosacea-support.org
    Oral Antibiotics

    If the nasal swelling is associated with the papules and pustules normally seen in rosacea, then systemic antibiotics along with topical metrogel or finacea may also be of benefit. Once the papules and pustules are under control, the associated swelling may be reduced enough to see an overall benefit in appearance. One of the newer antibiotics on the market is a low dose form of doxycycline called Oracea, which may be useful in helping to maintain a long term benefit from antibiotic usage.
    Accutane

    Accutane or roaccutane has been used for many years to treat cystic acne. There is a good body of evidence to say that you can successfully treat rosacea with accutane. Additionally there are some published papers that deal specifically with treating rhinophyma with accutane.
    Isotretinoin has also been demonstrated to decrease nasal volume in rhinophyma. The most significant regression has been noted in younger patients with less advanced disease.

    Isotretinoin has also been demonstrated to decrease nasal volume in rhinophyma. The most significant regression has been noted in younger patients with less advanced disease.
    Biopsy specimens from phymatous skin prior to isotretinoin therapy showed numerous large sebaceous glands. During isotretinoin therapy, the glands diminished in size and number. Other studies have confirmed the usefulness of isotretinoin for phymatous change.
    [See treating rhinophyma with accutane]
    Accutane is not a drug to be taken lightly. If you would like to try this as an option, the above references might help you find a doctor that can support you using this as a treatment option. You may also want to discuss the option of low-dose accutane with your doctor.
    Covering Up

    As you start to reduce the inflammation, you will probably also benefit from covering over some of the redness. Some options include the easily available Clinique Redness Solutions, or Eucerin Redness Relief which may be able to offer some relief from the redness. Additionally the green tinted version of the Tone Perfecting Cream may cover some redness.

    Perhaps you can find some foundation or tinted moisturizer that you can also include in your daily regime. It might not be easily obtainable worldwide, but The Cancer Council in Australia has a range of tinted moisturiser SPF 25 that looks interesting. Don’t discount a liquid foundation as a possibility, even if you are a guy.
    IPL and Lasers

    We now know that IPL is excellent for treating a red face and broken blood vessels. Will any of the benefits of IPL also help a red swollen nose ? In general IPL and pulsed dye lasers are useful in reducing the redness flushing, burning, itching, dryness and swelling of rosacea.
    The AAD suggests that for thickening of the skin on the nose and cheeks as seen in rhinophyma, the CO2 laser and erbium:YAG laser can be used.


    Surgical Options

    When the growth of the nose tissue becomes impossible to manage with topicals or isotretinion, surgical intervention can be an option. Surgery can naturally have its own risks. With the removal of extra tissue also comes the risk of scarring.
    CO2 Laser

    A 2004 paper; The Gold Standard for Decortication of Rhinophyma: Combined Erbium-YAG/CO2 Laser, details how the authors suggest that the combined YAG/CO2 laser is superior to other lasers, scalpel, radiotherapy and skin grafts in dealing with rhinophyma.
    Also some related comments from the AAD page Is laser treatment right for your rosacea? ;
    Some patients with longstanding rosacea develop thickening skin on the nose and cheeks, which is called rhinophyma. The CO2 laser and erbium:YAG laser can be used to remove this thickening skin and improve the contour of the nose. Other surgical procedures used to treat this condition include dermabrasion and excision with a scalpel. Treatment options may be combined to obtain best results.
    Dermatologists recommend early treatment of rhinophyma to help prevent the condition from progressing and becoming more difficult to treat. In the advanced stages, rhinophyma can cause difficulty breathing through the nose. It also is possible for the nostrils to collapse.
    Other Surgical Methods

    A 2003 paper; New surgical adjuncts in the treatment of rhinophyma: the microdebrider and FloSeal details a novel technique using a standard microdebrider followed by a haemostatic sealant to eliminate bleeding.

    Comment


    • #3
      I am so sorry but I neglected to say that David Pascoe wrote all that info I posted from Feedblitz yesterday regarding rhinophyma and I am so appreciative of all the excellent work he does for all rosaceans! Thanks David...you are the best

      Best wishes,
      Melissa

      Comment


      • #4
        Thanks for the info

        Comment


        • #5
          Early Stages of Rhinophyma

          Hi,

          I am new to the group. I came across Redfaced's posting when I searched for Rhinophyma on the web. I was recently diagnosed with a mild case of Rosacea, but my nose is already in the early stages of rhinophyma. It was hard to believe in the beginning because there are very few female Rosaceans that experience this subtype of Rosacea, especially when I only in my early 30's and have a mild case. Unfortunately, my nose seems to be getting a little bigger each month and I am afraid that the condition will get worse if I don't start treatment. I am curious if anyone here with early stages of Rhinophyma found a good treatment for it. Also, if anyone knows of a good dermatologist in NYC who has an in-depth knowledge of Rosacea, please let me know.

          Comment


          • #6
            Originally posted by Stefieny View Post
            Hi,

            I am new to the group. I came across Redfaced's posting when I searched for Rhinophyma on the web. I was recently diagnosed with a mild case of Rosacea, but my nose is already in the early stages of rhinophyma. It was hard to believe in the beginning because there are very few female Rosaceans that experience this subtype of Rosacea, especially when I only in my early 30's and have a mild case. Unfortunately, my nose seems to be getting a little bigger each month and I am afraid that the condition will get worse if I don't start treatment. I am curious if anyone here with early stages of Rhinophyma found a good treatment for it. Also, if anyone knows of a good dermatologist in NYC who has an in-depth knowledge of Rosacea, please let me know.
            Hi
            I am also a woman with phymatous rosacea. I get swelling of my nose, chin, cheeks, forehead, and eyelids. I have controlled it a lot through diet (no alcohol, no dairy, no sugar, no gluten, no citrus fruits.) Sometimes antihistamines help and other people have used IPL. You probably want to start a diary of what you're eating, etc and determine your triggers. Some people are also helped by taking a baby aspirin in the evening before bed. Feel free to ask more questions.
            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


            • #7
              Rhinophyma

              Hi Queta,

              Thanks for the advice.

              Unfortunately, it is nearly impossible for me to control the flushing because it gets red whenever I wash my nose. I saw Dr. Cohen this week and he prescribed Oracea. He said it will reverse my nose, so I will try and see if it works.

              Comment


              • #8
                Hi Stefieny,

                You are in good hands with Dr Cohen and if the Oracea does not provide the relief you were hoping for he would prescribe Accutane if necessary. So don't worry. It will be OK.

                Best wishes,
                Melissa

                Comment


                • #9
                  Thanks Melissa!

                  Comment


                  • #10
                    Stefieny's question re rhynophyma

                    Hi, I have had rhynophyma for a number of years. My nose was really big. Two months ago I finally put aside my principled aversion to antibiotics and started taking doxycline. Within around three weeks my nose had shrunk -- I look pretty normal now. I am much more confident (or less insecure) to see the least. Search this site for discussions of the drawbacks of long-term use of doxy -- which (or so I understand; please confirm for yourself) can be mitigated by taking a low-dose version called Oracea.

                    As regards a good dermatologist in NYC -- well, I live in London now, but once when visiting NYC 10 years ago I saw Dr David Colbert. This was not rosacea related. But I will say he struck me as extremely competent. He correctly found that a cyst on my eyelid, which a UK GP had told me was harmless, was actually advanced skin cancer. A biopsy proved Dr Colbert to be correct, and I had immediate surgery. You might at least consider him.

                    Good luck.

                    Comment


                    • #11
                      Thanks for sharing your experience Lingyai.
                      I am happy that your rhinophyma is in check with the antibiotics- that's wonderful!

                      Best wishes,
                      Melissa

                      Comment


                      • #12
                        Originally posted by lingyai View Post
                        Hi, I have had rhynophyma for a number of years. My nose was really big. Two months ago I finally put aside my principled aversion to antibiotics and started taking doxycline. Within around three weeks my nose had shrunk -- I look pretty normal now. I am much more confident (or less insecure) to see the least. Search this site for discussions of the drawbacks of long-term use of doxy -- which (or so I understand; please confirm for yourself) can be mitigated by taking a low-dose version called Oracea.

                        As regards a good dermatologist in NYC -- well, I live in London now, but once when visiting NYC 10 years ago I saw Dr David Colbert. This was not rosacea related. But I will say he struck me as extremely competent. He correctly found that a cyst on my eyelid, which a UK GP had told me was harmless, was actually advanced skin cancer. A biopsy proved Dr Colbert to be correct, and I had immediate surgery. You might at least consider him.

                        Good luck.
                        Really? Glad to hear it! I have never heard of Antibiotics reversing Rhinophyma. Are you sure you had true Rhinophyma diagnosed by a derm or was it just the red, swollen nose that most rosaceans get...I only ask because there is a distinct difference between the two in terms of a clinical diagnoses but often people figure they have Rhinophyma because their nose may be red and swollen.

                        Rhinophyma is growth of tissue including nodules, lumps and bumps that are fibourous as well as a red/purple colour to it. There is also activity of overactive sebacious glands whiere the nose has enlarged pores and is quite often oily or shiney. Some derms will use the image of a strawberry to describe the appearance with the seeds representing the enlarged pores.

                        The only medication I have ever read working is low dose Accutane.

                        Please share details in terms of your diagnosis and dose, side effects etc.

                        Thanks

                        Comment


                        • #13
                          Hi Lingyai!

                          I am so glad to hear that doxycycline helped your nose. I am feeling a lot better knowing that Oracea will probably treat my condition as well. I still have two concerns though, not sure if anyone would know: What are the chances that the nose will stop growing once we terminate the intake of Doxycycline? If the condition continues, does that mean we have to take the antibiotic for the rest of our lives? Also, do you have any redness on your nose? Did Doxycycline help reduce the redness?

                          I actually read about Dr. David Colbert in a magazine and I looked him up online once. I was certain that he is a very knowledgeable derm, but i wasn't sure if he was the right derm for Rosacea at the time. Since I am already seeing Dr. Cohen, I will probably f/u with him.

                          Regardless, thank you very very much for sharing that information with us!!

                          Stephanie

                          Comment


                          • #14
                            rhynophyma

                            Hi all, I live in sweden and was diagnosed with rosacea 1 year ago and already experiencing the signs of rhynophyma. My nose is not only swollen but it looks like a new shining layer with nummerous pores is growing on top of the existing layer with some fluid underneath. I have to admit it keeps me really bussy and regretfully keeps me up most of the night. Actually the rest of my skin is doing very well lately mainly due to applying ZZ cream daily which has made my face almost clear of papules and pustules. Just a red complexion on my forehead and spider veins and redness on the cheeks under my eyes. The strange thing is that the ZZ cream seems to progress the growth of new tissue on my nose. I am seeing my dermatogist next week (sept 10) to see if it is diagnosed as Rhynophyma and off course to see how to treat. As far as i know you can only treat it with accutane or surgery. I have had accutane twice in 1989 and 1992 for moderate acne and was clear for about 15 years before rosacea kicked in. I will keep you all up to date on the outcome and suggestions from my dermatologist.
                            All the best,
                            Peter

                            Comment


                            • #15
                              Good luck Peter. I hope your appt goes well.

                              Best wishes,
                              Melissa

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