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Thread: Accutane use for rhinophyma BUT afraid due to Subtype 1 rosacea? ALL FEEDBACK PLS

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    Default Accutane use for rhinophyma BUT afraid due to Subtype 1 rosacea? ALL FEEDBACK PLS

    Hello folks -

    I could really use feedback from anyone who has ETR rosacea (subtype 1) but also has the beginnings of rhinophyma (which I now have) and has used Accutane.

    Most of you have been on this forum for a long time know that I have subtype 1 rosacea which I am controlling with clonidine and lifestyle modifications. It got a lot worse during menopause. My BIG problem now is my nose. Derm tells me that I DO have rhinophyma. My nose is enlarged and I feel the pores are getting bigger and bigger ever day it seems. I have had IPL and vbeam on my nose to try and keep it calm but it is looking worse. I find when I fast, or eat VERY little, it does help - but still my nose has changed.

    My doc has in the past and recently suggested Accutane but for years I have avoided it as I have been far to fearful of potential complications. Its just that now, I am feeling quite desperate and very, very frustrated with my nose. Frustrated enough to actually consider starting Accutane next week.

    I read so many horror stores on this forum about Accutane but, I believe if anyone was feeing what I am feeling and seeing what I am seeing they would understand the desperation.

    I AM LOOKING FOR ANYONE TO COMMENT WHO HAS NOSE ISSUES AND HAS USED ACCUTANE. Please provide your experience.

    Mistica, Nat, Brady...I know you are all totally opposed to the use of Accutane, but what else would you suggest???? You do NOT have rhinophyma. I have tried many, many types of topicals and meds, NONE of which have helped. I feel this is kind of my last hope.

    Thanks to all in advance for your comments.

    Wendy

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    I can see you're in a really difficult position making the choice. If accutane is to be effective at all for rosacea (and not harm subtype 1) it is only going to be in very small doses - 5mg per day. The book 'The Rosacea Cure' by Dr X available on Amazon does discuss this approach. There are a small number of dermatologists who deliberately prescribe accutane at very low doses for rosacea. In that book the author also recommends using other treatments alongside accutane, such as azalaic acid and a mix of tea tree oil/almond oil, so not only using accutane alone.

    There are many people on this forum who will rightly tell you about the damaging impact for rosacea that normal doses of accutane can have - 10mg or 20mg per day (which are not very high doses of accutane when treating acne). So I think you are right to be very cautious.

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    I understand your worry. But I'm just curious that you haven't tried a low dose?
    What is the possible harm that can be done from low dose? I would like to know myself as I am taking low does Accutane. Even 5mg a day would be 35mg a week being super super low dose.
    I have heard the stories of ex accutane users getting rosacea after medium to high doses but I had no other choice as my rosacea and thicking is also caused a lot by serum or oil and everything I tried has done nothing for oil! I tried everything. Accutane seems to be the only thing in the world that stops it for me.

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    wendykay,

    I started a thread about low dose isotretinoin on November 6, 2016. There are some in RF who have reported success in controlling their rosacea with low dose. I will start collecting anecdotal reports in the same thread of those who say it works. It is your body. You can accept what your doctor is recommending as treatment for phenotype phymatous using low dose isotretinoin or not. Up to you. However, there are a number of treatments besides low dose isotretinoin and you should know that phenotype phymatous is the most successfully treated phenotype. For example there is a 'salt blasting surgery' mentioned in end note 12, and about dozen other treatments mentioned in the post.
    Brady Barrows
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    Quote Originally Posted by wendykay View Post
    Hello folks -

    I could really use feedback from anyone who has ETR rosacea (subtype 1) but also has the beginnings of rhinophyma (which I now have) and has used Accutane.

    Most of you have been on this forum for a long time know that I have subtype 1 rosacea which I am controlling with clonidine and lifestyle modifications. It got a lot worse during menopause. My BIG problem now is my nose. Derm tells me that I DO have rhinophyma. My nose is enlarged and I feel the pores are getting bigger and bigger ever day it seems. I have had IPL and vbeam on my nose to try and keep it calm but it is looking worse. I find when I fast, or eat VERY little, it does help - but still my nose has changed.

    My doc has in the past and recently suggested Accutane but for years I have avoided it as I have been far to fearful of potential complications. Its just that now, I am feeling quite desperate and very, very frustrated with my nose. Frustrated enough to actually consider starting Accutane next week.

    I read so many horror stores on this forum about Accutane but, I believe if anyone was feeing what I am feeling and seeing what I am seeing they would understand the desperation.

    I AM LOOKING FOR ANYONE TO COMMENT WHO HAS NOSE ISSUES AND HAS USED ACCUTANE. Please provide your experience.

    Mistica, Nat, Brady...I know you are all totally opposed to the use of Accutane, but what else would you suggest???? You do NOT have rhinophyma. I have tried many, many types of topicals and meds, NONE of which have helped. I feel this is kind of my last hope.

    Thanks to all in advance for your comments.

    Wendy
    So sorry you have ongoing nose problem Wendy! I am not opposed to accutane.. I never used it as my derms refuse to give it to me (not a good candidate; thin dry flushed skin). But for rosacea subtype 2 it can work very well and for rhinophyma apparently too!
    Given your flushing issues, would you think it is a good idea to use very low dose accutane initially? Like others here suggested too. I remember very old discussions, back in the mid/late 2000's on here, where people had success with accutane on a dose of 2,5 mg every other or every 3rd day even. On such a low dose it can still act as an anti inflammatory yet it won't give severe side effects?

    The thing is that from 20 mg a day onwards (and for some even at a lower dose), accutane can give skin flushing... But if you start very low, you will soon enough see if you flush more on it? And if you don't flush from 2,5 mg a day, but also don't see enough nose effects, you can maybe slowly increase the dose? I would probably take a good bit of time for this myself, if I were you. Not jump right to higher doses, because they will dry your skin (making it more prone to flushing unless you can control the dryness) and it is known to give flushed skin at a (much) higher dose. But you could be completely fine at a low dose

    I hope it will help you!
    Last edited by nat007; 23rd July 2017 at 02:11 PM.

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    Hello all -

    Thank you so much for your comments and advice. It is very much appreciated - more than you know.

    Brady, I am going to read through all of the hyperlinks you posted.

    Raymond, the reason I am fearful of low-dose Accutane is simply due to the fact that I do not want to exacerbate any other of my symptoms. However, of all of the rosacea symptoms I have had, the nose enlargement/swelling, etc is by FAR the worst.

    Nat, thank your comments.

    I will see my derm on Tuesday and may consider an extremely low dose, but will decide then.

    My mother, who had a lifetime of acne and also the scarring to show for it, has never had rosacea, however she has always gotten cyst like pimples on her nose which have led to a lot of scarring, and that scares me! What is interesting is that when I gave her metrogel to use on her nose - she did not get another of these pimples?

    My dad had beautiful skin however, he did flush when he drank red wine. He did not have rosacea however, he did seem to have some food/drink sensitivities.

    Could I have my dad's symptoms which ultimately became rosacea (for me) and then, in menopause, have developed whatever is wrong with my mom's nose? I have never had acne (God willing, I don't get it now!)

    Just trying to figure it all out and try and get it more manageable. I do still get IPL on my nose as it helps to a certain extent.

    Thank you all again. And more feedback is always welcomed.

    Wendy

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    Hello Wendykay.

    I will tell you my story:
    I live in Sweden and shortly after summer when it started becoming cold here I started getting HUGE acne problems on my back.
    About 2-4 weeks after this my face started burning, it became SO sensitive to everything. I read online and self-medicated myself with Rosacea and tried
    Finacea as I read it helps (I already had it at home since I've been fighting Perioral Dermatitis past 5 years - though the day the facial burning started my PD disapeard)

    Finacea made the burning/inflamed feeling go away with about 80-90% but I still flushed, was always red and had some acne/inflamed cheeks.
    Though the acne situation on my back got REALLY bad so the doctors put me on Accutane as they told me it was the only way.

    I was on 30 mg/day and it got rid of ALL my acne. My face cleared up, I had a tiny bit of redness (as I had before) but even the redness got better.
    My point is - with low dose Accutane (You will probably eat less than 30mg/day so I think you will be totally symptomfree) I just had dry lips.

    Right now my face is totally symptomfree. I'm not red. I can take hot showers (in my face) and I will not be red. Before putting a moisturiser on would make my face a red hot mess.. Now I don't need to do anything anymore.
    Maybe I'm good now due to it's summertime. I've never had a summer before with Rosacea. But I feel like accutane cured me.

    This week I've been out tanning without using any SPF and I only get brown. Not red.. And btw, when I went to the doctor they told me I had a combination of Subtype 1 & 2, yet it worked good.

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    Thank you also for your feedback kwamex.

    Well All, I have taken the plunge. God help me that is not into the DEEP END!!

    I took my first 10 mg capsule of Accutane. Derm suggests 10 mg 3 times a week but I will only take 10 mg twice a week at most until I understand what the impact is for me. I am very, very nervous but I needed to try this. It has been suggested to me in past over the years but I have never had symptoms bad enough or enough nerve to take it.

    Please wish me all the best. Positive thoughts can help a lot.

    Wendy

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    Quote Originally Posted by wendykay View Post
    Thank you also for your feedback kwamex.

    Well All, I have taken the plunge. God help me that is not into the DEEP END!!

    I took my first 10 mg capsule of Accutane. Derm suggests 10 mg 3 times a week but I will only take 10 mg twice a week at most until I understand what the impact is for me. I am very, very nervous but I needed to try this. It has been suggested to me in past over the years but I have never had symptoms bad enough or enough nerve to take it.

    Please wish me all the best. Positive thoughts can help a lot.

    Wendy
    You may find it helpful to consider the 5mg capsules, spread out over four days a week.

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    Thank you for your comment. I don't think it is possible to get 5 mg capsules is it?

    Wendy

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