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Thread: rhinophyma questions?

  1. #11
    Moderator Melissa W's Avatar
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    Thanks for sharing your experience Lingyai.
    I am happy that your rhinophyma is in check with the antibiotics- that's wonderful!

    Best wishes,
    Melissa

  2. #12
    Senior Member RedFaced's Avatar
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    Quote 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

  3. #13
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    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

  4. #14
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    Post 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

  5. #15
    Moderator Melissa W's Avatar
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    Good luck Peter. I hope your appt goes well.

    Best wishes,
    Melissa

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    I had the early signs of rhinophyma for sure.... I tried numerous things and you need to think outside the box instead of relying on your doctor with this one. Mine was cured with mepacrin, however... You can try things such as topical diclofenac, topical ibuprofen, i believe topical protopic would be good but i never had the chance to try this. The problem stems from inflammation of the cappilaries but also of the sebacious glands so anything that can relieve this inflammation will prevent any further growth.

    So firstly i would try something like elidel or protopic. Then you have the diclofenac, ibuprofen etc. The protopic should work though so give that a shot.

    Failing that don't forget light therapy, i find the infrared wavelengths best for inflammation.


    Edit: how do i know i had rhinophyma? well the left side of my nose to this day is still slightly larger than the other and this is the side i was watching slowly grow. Some people may say it's not possible for someone as young as myself to have this...but they don't realise that accutane can trigger all sorts as potential side effects. I know the left side of my nose has been left slightly larger than the other due to the inflammation/swelling i had in that area for nearly two years.


    Cheers
    Last edited by lamarr; 3rd September 2009 at 12:56 PM.

  7. #17
    Senior Member RedFaced's Avatar
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    protopic looks like a viable option for nose swelling, I wonder if doctors or derms would be willing to prescribe this for rosacea? These are some good options to have on hand, thanks lamarr.

    Quote Originally Posted by lamarr View Post
    I had the early signs of rhinophyma for sure.... I tried numerous things and you need to think outside the box instead of relying on your doctor with this one. Mine was cured with mepacrin, however... You can try things such as topical diclofenac, topical ibuprofen, i believe topical protopic would be good but i never had the chance to try this. The problem stems from inflammation of the cappilaries but also of the sebacious glands so anything that can relieve this inflammation will prevent any further growth.

    So firstly i would try something like elidel or protopic. Then you have the diclofenac, ibuprofen etc. The protopic should work though so give that a shot.

    Failing that don't forget light therapy, i find the infrared wavelengths best for inflammation.


    Edit: how do i know i had rhinophyma? well the left side of my nose to this day is still slightly larger than the other and this is the side i was watching slowly grow. Some people may say it's not possible for someone as young as myself to have this...but they don't realise that accutane can trigger all sorts as potential side effects. I know the left side of my nose has been left slightly larger than the other due to the inflammation/swelling i had in that area for nearly two years.


    Cheers

  8. #18
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    Update on Oracea:

    Almost into my 4th week of taking Oracea. The pustules on my forehead seems to be clearing up a little, but it hasn't reverse my nose yet. The pores are larger than before and the skin looks thicker than a month ago. Not sure if it's a side effect, but I have been feeling a lot of pressure on my head lately. getting a little worry..

  9. #19
    Moderator Melissa W's Avatar
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    Hi Stefieny,

    Not sure about the pressure on your head. If that persists I would call Dr Cohen.
    Regarding the 4 weeks of Oracea though- it does take a long time for it to work to see big results. It is great that the pustules are clearing up on your forehead. Definitely a sign that it is working. Give it at least another couple of months to see if it will help your other issues. But please check out the pressure symptom if it persists. I get sinus headaches (have one right now) and it feels like pressure on my head but your symptom could be due to something else so don't ignore it.

    Good luck!

    Melissa

  10. #20
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    Hi Melissa,

    This pressure started about two weeks ago and last week, it officially became a chronic problem. I will call Dr. Cohen and probably visit my MD to request a CT Scan or something. It's kind of hard to describe the problem, but I can feel the pressure all over my head. I think it's from taking Oracea since I have never experience this before. just hope it's not something serious...

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