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Thread: How I stopped my Rhinophyma progressing.

  1. #1
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    Default How I stopped my Rhinophyma progressing.

    I'm posting this to help anyone out who has nose swelling and progression to Rhinophyma. I have type 1 Rosacea with severe flushing and swelling limited to only my nose.
    In 2015 my MD suggested I try a month on Deflazacort at a dose of 30mg/day. It completely cleared up the swelling after 2 weeks and then in the 5-6th week I tempered off the dose to 30mg once every 2 days and then 1 30mg every 3 days. I stopped in the 7th week. I now do this 2 times a year for a month (Jan and July) and while I still have Rosacea it completely halted the Rhinophyma.
    My Doctor said Deflazacort will work for any edema and swelling in the skin whatever condition you have, and he thinks that because Rhinophyma needs constant swelling to for fibrosis to start up that stopping it for a few months a year halts the progression. He said he also uses it after Rhinoplasty to help his patients nose swelling post-op and that is where he got the idea to try it for Rhinophyma.

    I haven't had any side-effects on this med yet (over the last 3 years) and figured it was safer than Isotretinoin.

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    Quote Originally Posted by Markhill8 View Post
    I'm posting this to help anyone out who has nose swelling and progression to Rhinophyma. I have type 1 Rosacea with severe flushing and swelling limited to only my nose.
    In 2015 my MD suggested I try a month on Deflazacort at a dose of 30mg/day. It completely cleared up the swelling after 2 weeks and then in the 5-6th week I tempered off the dose to 30mg once every 2 days and then 1 30mg every 3 days. I stopped in the 7th week. I now do this 2 times a year for a month (Jan and July) and while I still have Rosacea it completely halted the Rhinophyma.
    My Doctor said Deflazacort will work for any edema and swelling in the skin whatever condition you have, and he thinks that because Rhinophyma needs constant swelling to for fibrosis to start up that stopping it for a few months a year halts the progression. He said he also uses it after Rhinoplasty to help his patients nose swelling post-op and that is where he got the idea to try it for Rhinophyma.

    I haven't had any side-effects on this med yet (over the last 3 years) and figured it was safer than Isotretinoin.
    Thanks for sharing - I'm glad the deflazacort has given you some relief.

    Do you think that it has helped the flushing aspect of your nose as well?

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    In the last 3 weeks my nose has enlarged pores all over it. It never fu----g ends does it!!! It looks so awful. My derm says that I have no nodules or anything like that (yet) and he does not foresee that happening but my nose is enlarged and the pores are all over and huge. It is so saddening and embarrassing. Does anyone think that the anti-malarial - plaquenil might help??? I do not really wish to take it but the only other thing my doc suggest is v-beam to help make is less reactive to heat, etc, etc,.

    Wend

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    I might also be concerned that the steroid might also inflame my existing type 1 rosacea on cheeks and other areas.

    Wendy

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    Quote Originally Posted by wendykay View Post
    In the last 3 weeks my nose has enlarged pores all over it. It never fu----g ends does it!!! It looks so awful. My derm says that I have no nodules or anything like that (yet) and he does not foresee that happening but my nose is enlarged and the pores are all over and huge. It is so saddening and embarrassing. Does anyone think that the anti-malarial - plaquenil might help??? I do not really wish to take it but the only other thing my doc suggest is v-beam to help make is less reactive to heat, etc, etc,.

    Wend
    I think the plaquenil has helped the swelling for me. I've been on it 6-7 months now. I don't think it has helped with the flushing, and I doubt it would be able to help with pores. I've had no side effects.

    Getting off clonidine has helped my nose / sinus burning a lot. I really do think it is a bit like a nasal decongestant in some ways (eg https://www.verywell.com/everything-...estion-1192177 )

    I remember reading that the nodular development is virtually non-existant in women ( http://dermatologytimes.modernmedici...ress-slowed-sw ) fwiw. I too was concerned that repeated swelling + flushing of my nose would eventually lead to nodular development, but it doesn't look like that's the case at least in females. And if swelling=>nodules, one could argue women should be *more* susceptible due to our hormonal fluctuations (eg pregnancy => nasal swelling/congestion)...

    xx

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    Quote Originally Posted by wendykay View Post
    In the last 3 weeks my nose has enlarged pores all over it. It never fu----g ends does it!!! It looks so awful. My derm says that I have no nodules or anything like that (yet) and he does not foresee that happening but my nose is enlarged and the pores are all over and huge. It is so saddening and embarrassing. Does anyone think that the anti-malarial - plaquenil might help??? I do not really wish to take it but the only other thing my doc suggest is v-beam to help make is less reactive to heat, etc, etc,.

    Wend
    Derms in general haven't got a clue about how to treat nose swelling and Rhinophyma. I got lucky that mine is also a plastic surgeon who does Rhinoplasty. He has a lot of knowledge about nose swelling and the tissue of the nose.
    I know about the dangers of steroids (deflazacort is slightly less potent than prednisone) but I take it for 4 weeks (and taper down in the 3rd week to 1 in the 4th week), 2 times a year. It is like a miracle for the swelling.
    It does not help the redness or flushing when I stop them but to be honest that part of Rosacea is easy to deal with when you have skin thickening. I don't care that my nose flushes and goes red when I flare up, I can deal with that, as long as it remains at it's normal size.
    Last edited by Markhill8; 8th February 2018 at 12:05 AM.

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    Quote Originally Posted by wendykay View Post
    In the last 3 weeks my nose has enlarged pores all over it. It never fu----g ends does it!!! It looks so awful. My derm says that I have no nodules or anything like that (yet) and he does not foresee that happening but my nose is enlarged and the pores are all over and huge. It is so saddening and embarrassing. Does anyone think that the anti-malarial - plaquenil might help??? I do not really wish to take it but the only other thing my doc suggest is v-beam to help make is less reactive to heat, etc, etc,.

    Wend
    Hi Wendy. Sorry the nose is still an issue. Plaquenil works very very well as an
    Anti inflammatory for my skin. Important to have regular eye exams. I have
    Experienced no major side effects after one year. Best, birdie

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    I may ask my derm about it. I did once before and he said "no" but I am going to push this time. My nose in four years when from nice to enlarged and full of pores. I HATE IT.

    Laser_cat - are you taking the plaquenil to help with the inflammation of the rosacea as well?

    Thank you both.

    Wendy

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    Quote Originally Posted by wendykay View Post
    I may ask my derm about it. I did once before and he said "no" but I am going to push this time. My nose in four years when from nice to enlarged and full of pores. I HATE IT.

    Laser_cat - are you taking the plaquenil to help with the inflammation of the rosacea as well?

    Thank you both.

    Wendy
    Wendy - Yes I was put on the plaquenil for the rosacea. I have no autoimmune issues (where it is usually prescribed)

    Maybe it would help if you give the following to your derm. (Plaquenil is also known as Hydroxychloroquine.) It has helped 3/5 patients with severe burning rosacea. Maybe the paper will give you + your derm other ideas as well

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3692271/

    hang in there xx

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    Default How to message?

    Quote Originally Posted by wendykay View Post
    I may ask my derm about it. I did once before and he said "no" but I am going to push this time. My nose in four years when from nice to enlarged and full of pores. I HATE IT.

    Laser_cat - are you taking the plaquenil to help with the inflammation of the rosacea as well?

    Thank you both.

    Wendy
    I just registered on this forum and would really like to talk to you WendyKay. If there's any way you can pm me that would be great. I can't figure out how to do it as a new user. I find I have a lot in common with your posts and am desperate to talk to someone right now. Thank you!

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