19 Reader Comments

1. Peter H says:

   May 18, 2009 at 11:50 PM

   Dear David, after absorbing information from your extremely informative website (very well done!) for over half a year I thought it would be more than appropriate to start contributing as well. I am a Dutch born 42 year old male living a healthy life in Sweden and I am diagnosed with Rosacea Sept. 2008. I have a serious cystic acne history specifically on face and back (as my two older brothers and sister) and between the age of 15 and 23 tried the basic OTC and doctors descriptions available (from benzoyl peroxide to oral antibiotics) all of no avail. In 1989 I had my first 6 month of Roaccutane (Accutane) treatment and this totally cleared my acne and oily (sebum) skin for over a year after ending the treatment. Acne and oily skin returned but to a lesser extend and another Roaccutane treatment in 1993 helped me to manage the acne to a c. 80% improvement compared to the pre-accutane period. Around the age of 30 my scarred face and back cleared completely from acne for what I thought would be forever since my brothers and sister, without any Accutane treatment, cleared also for 95% from acne around the same age. My conclusion for the efficacy of Accutane on acne: reduction of sebum production and inhibition of the sebaceous glands. As unpleasant surprise the acne started to return 12 years later but this time together with a reddening of the face, dry skin, papules & pustules and widening facial blood vessels under both eyes. The house doctor and dermatologist diagnosis were easily made but the only part which still leaves me wondering is the red neck including inflammatory pustules and papules and the return of some acne on my back. For me its best described as a combination of Rosacea in the face together with (adult) acne on neck and back but the dermatologist prefers to call it extrafacial rosacea. I have been taking oral limecycline (tetralysal) for 3 month (600 mg for 6 weeks followed by 300mg for another 6) and already after day 3 the bumps on face and neck and to some extend on the back were gone but the facial redness, widening blood vessels together with facial ‘inward red coins’ stayed. After the 6 month of limecycline my daily regimen consists of Cetaphil mild cleanser, one drop of Jojoba Oil, Rosacea LTD3 and Rosacea care sunscreen all on face and neck. My face still clears every day (except for the blood vessels) the only problem left is a return of lesions on neck and back. I am now again taking limecycline (300 mg a day) together with the full daily regimen and again the neck lesions cleared almost immediately followed by the back lesions. I plan to stop gradually again soon with the limecycline and start experimenting with not using oil and LTD3 in the neck to see if face and neck react differently. Low – or micro dose long term antibiotics or accutane seem to offer at least a solution (to my believe both trough the ability to modulate the inflammatory response pathway) the only worry I have is the long term consequences. Especially since I have the feeling that taking Roaccutane a long time ago could be the main reason for having Rosacea in the first please. Although I have to admit directly that this is just a feeling without any scientific evidence. Thanks again for this great site and I will keep reading and contributing!
   One more question for David: do you have an opinion on Rosadyn (not on the person behind it)?

   Reply
   • David Pascoe says:

     January 4, 2014 at 11:25 AM

     Very belated, but thanks for your comments Peter (I can now reply in-line personally).

     It is only through the feedback from the real world that we all benefit from each other’s experiences and move forward.

     Reply
2. Laima Rastenis says:

   July 11, 2009 at 4:00 AM

   I too would like to know what you think of Rosadyn–the new neutraceutical from Dr. Nase.

   Reply
3. mik says:

   August 28, 2009 at 5:43 PM

   I too am afraid to go on accutane again for it caused the rosacea as well as my messed up nose in the first place.
   My nose is lumpy and horrible and in the past 6 months have been getting papules and pustules from inflammation. There is so little info about this condition and I thank you for the steps your taking.

   And isn’t it true that once you stop the accutane that the enlarged glands will just return to their enlarged states?

   Reply
4. David Pascoe says:

   March 18, 2010 at 11:18 AM

   Hi Mik,

   The official word from the expert committe on rosacea treatments says that ;

   “Oral isotretinoin, used to treat severe acne, has been demonstrated to decrease nasal volume, especially in patients with less advanced disease, though the size may increase again after therapy is stopped”

   So the bad news is that there is a chance that the swelling will return. Perhaps discuss the possibility of trying a lower dose of accutane.

   davidp.

   Reply
5. Peter H says:

   August 30, 2010 at 5:41 PM

   Update on Rhinophyma and accutane!
   My initial stage 2 rosacea rather quickly developed into an early rhinophyma stage. Numerous shiny large sebaceous glands started to appear together with signs of fibrosis on both sides of the nose. Together with my dermatologist we decided to go for a low dose (ro)accutane course. 3 month 30mg/d, 2 month 20mg/d, 2 month 10mg/d and 2 month 30mg/w. My initial rosacea signs (reddening of the face, papules & pustules, burning sensation and widening facial blood vessels under both eyes) and my early rhinophyma improved significantly within 3 weeks and continued to improve until I completely lost the ‘look and feeling’ of rosacea. What’s left today is some widening blood vessels and c. 50% of the early fibrosis on the nose.
   I stopped taking accutane and anticipate most signs will return at some stage. My main worry is the nose and therefore am prepared to go back on ld accutane when the glands start to grow again. The quesion for me will be: continuous low dose or interval courses. Cheers,
   Peter

   Reply
6. David Pascoe says:

   August 31, 2010 at 9:47 AM

   Thanks for your updates Peter. Great to hear that you are getting some good results.

   Reply
7. sami from Syria says:

   October 13, 2010 at 4:45 PM

   Hi Peter,

   I’m glad to hear that Accutane improved your Rhinophyma
   in such a short period of time.
   This sounds very encouraging to me because I too have
   Rhinophyma, and tried to treat it with Accutane 3 years
   ago with no noticeable improvement.
   My dose was ( 10mg/day for 6 months ).

   I know patients respond differently to medications, so maybe I should give Accutane another try, with longer period of time or maybe with higher dose!

   Anyway, I have Questions for you:

   1- Were you taking any other medications or supplements while you were on Accutane? Anti-histamines, topical creams, nasal sprays, vitamins … etc?

   2-how much you weigh?

   Thank in advance Peter, and wish you the best.
   and many thanks to David.

   Sami
   29 year old male, suffering from Seb derm and
   Rhinophyma.

   Reply
8. Peter H says:

   October 18, 2010 at 6:41 PM

   Hi Sami,
   Indeed patients respond differently and in addition there are different types of Rhinophyma. My signs are significant sebaceous glands growth together with (early) fibrosis. I am 44 years old/85 kg and didnt use anything else whilst on accutane. I experimented a liitle with accutane though and can keep the signs under control with c. 50mg/w.
   Good luck!
   Peter

   Reply
9. sami from Syria says:

   October 20, 2010 at 8:04 AM

   Thank you so much Peter for your replay.
   I started my second accutane regime 11 days ago
   (20mg/day). I weigh 72 kg. and according to the article (Accutane dose of 22mg a day works best: EADV) -posted by David Pascoe- I think I’m on the right
   dose……… I hope! :
   http://rosacea-support.org/accutane-dose-of-22mg-a-day-works-best-eadv.html

   Some of My Rhinophyma Signs are very similar to yours:
   noticeable sebaceous glands growth with early fibrosis,
   large pores and my nose looks a little pink.
   My main and most obvious problem is the frequent swelling of the nose which is related to allergy (as I told by my ENT doctor). here’s a topic I wrote about my condition:
   http://rosacea-support.org/community/viewtopic.php?f=3&p=18326

   Anyway, 11 days of 20mg Accutane.
   I know it’s too early to judge on the medication BUT I
   already can see and feel some improvements.

   My big concern now is the side effects of Accutane, my lips are dry all the time .. and the worst thing is this bad backache I have most of the time.

   I’ll try to continue with the20 mg Accutane per day for another few weeks till I have the improvement I seek, and then I’ll change the dose to 10mg per day because I don’t think my body can handle the side effects.

   Thank you again Peter, you helped me a lot, and I hope we’ll hear the best news about your treatment from
   you soon.

   Regards

   Sami.

   Reply
10. Peter H says:

    January 19, 2011 at 7:33 PM

    Update on Rosacea, Rhinophyma and Low Dose Accutane!
    44 years old male, 85 kg, blessed with Rosacea and since Oct 09 on, what is considered, a Low Dose of Accutane (Roche, Sweden).

    I had two 6 mnth courses of Roaccutane in ’89 and ’93 which cleared up my acne (face and trunk). No acne for over 12 years. Rosacea (and acne?) since Sept 08 with: reddening of the face, P&P’s, burning sensation, widening facial blood vessels, early rhinophyma (glands growth and fibrosis). Due to the nature of my job (MD), I am frequently speaking in front of groups and my appearance was effecting my job in a profound way. What I have used before to batlle Rosacea: Limecycline, Rosacea LTD3, ZZ cream; all helped for P&P but not with the rest.

    After reading numerous research studies (Pubmed, Medscape) I decided, together with my very open minded dermatologist in Stockholm, to go for a low dose 9 mnth Roaccutane course: 3 mnth 30mg/d, 2 month 20mg/d, 2 month 10mg/d and 2 month 30mg/w. Within 3 weeks major improvements and during the rest of the course I completely lost the look and feeling of Rosacea. No side effects either! Rosacea signs left after 9 month usage (July ’10): some widening blood vessels and c. 50% of the early fibrosis. 100% amazing!

    Return of P&P’s and facial burning two month after stopping (Sept ’10). Together with my Derm decided to go back on Roaccutane in Oct ’10 on 40mg/w until today. Currently no Rosacea signs at all and no side effects. Today I am experimenting a bit in finding the lowest possible dose to control the rosacea. I believe my personal treshold is somewhere around 5 mg/d as a possible longer term maintenance dose.

    Experimental? Yes for sure. The one main idea of Isotretinoin therapy revolves around total cummulative dosage but thats researched for Acne (not Rosacea) specifically. The total most agreed upon in the medical community seems to be around 120mg per Kilogram of body weight so I have some time to go. But since I dont really believe in a total rosacea remission without taking the drug and since there is no research on real long term (ultra) low dose accutane maintenance usage I will have to keep experimenting. But I am not really concerned about long term usage at these low levels.

    Personal conclusion: Accutane is extemely effective for most sufferers, period. At what cost to each individual (no matter at what dose and term) is still the subject of much debate!

    Reply
11. David Pascoe says:

    January 19, 2011 at 8:02 PM

    Thanks so much Peter and Sami,

    It is your sharing of your real life experiences that really makes things like online support groups shine.

    Thanks so much.

    davidp.

    Reply
12. Juan Venado says:

    February 21, 2012 at 10:54 PM

    For those of us whose rinophyma has developed into such a bad condition that we loath to look into a mirror, or whose self consciousness has really dipped into an all time low (me) there is help. I just completed the laser surgery procedure to remove the excess nasal tissue and what a difference!! Luckily the nose is flexible and can be reshaped by a trained dermatologist (get the most qualified & experianced one). The procedure took about 90 minutes I am on day 14 of recovery . Thanks be to God I could jump up & down and cry for joy at the excellent results. Despite being 73 years old and a type 2 diabetic the nasal skin although still pinkish is slowly recovering I treat it with a prescription of steriod creams & skin moisturizer. I’ve had roscea all my life minocycline & metrogel worked best for me.

    Reply
13. Peter H says:

    March 11, 2012 at 8:08 PM

    Update on Rosacea, Rhinophyma and Low Dose Accutane!
    45 years old male, 85 kg, blessed with Rosacea since 07 and since Oct 09 on, what is considered, a Low Dose of Roaccutane (Roche).

    Still using (ultra) low dose Roaccutane 30mg/w with fantastic results. No Rosecea signs at all, hardly fibrosis signs (80% treated) and therefore living a happy life without looking in the mirror all the time or reading about potential Rosacea cures on line. Havent been on this site for a very long time which tells probably enough.

    Very happy for Juan and I hope you will further recover every day!

    Reply
14. Juan Venado says:

    March 11, 2012 at 11:33 PM

    Just an update my nose is back to almost normal color ( a little pink) since the surgery 33 days ago & at my exit interview this week the doctor was very happy with the results & showed me a picture of the before & after and I can truthfully say it was worth the money. I also viewed a picture of the nasal tissues lasered & surgically removed and they were substantial. I can finally look somebody in the eye without them staring at my former disfigured rhinoplasty nose. So for you all that are as disfigured as I was, there is hope, but search for the most experianced & capable doctor in this type of surgery.

    Reply
15. raphael n says:

    May 10, 2012 at 2:10 AM

    hey im taking accutane about 2 months and i have some raised scars on nose, i think it is sebaceous hyperplasia, god these bumps are killing me =( i cant look ppl face to face cause these bumps are fucking disturbing me, i think it is not about rosacea, because it is result of cystic acne scarring, but i see alot of photos on google and they are same type of sebaceous hyperplasia, im taking 20mg/day about 2 months and i didnt see any improve untill now, it is normal? how long normaly takes to see any improvment? thanks

    Reply
16. Kris says:

    June 11, 2012 at 11:42 PM

    Hi everyone,

    I have huge pores on my nose and it is constantly red with small blackheads and some papules/pustules and extremely oily skin, but I’m guessing the under layers are very dry, since why would it produce so much sebum otherwise? This is my only skin problem and I wonder if you guys think accutane could be for me? I am currently on my third week using Finacea and I can’t really say if it has helped me yet.

    My thread on acne.org with pictures: (sorry if linking is not allowed) http://www.acne.org/messageboard/index.php/topic/311239-red-and-very-oily-nose-with-some-inflamed-papules-pictures-included/

    Reply
17. todd dugan says:

    February 15, 2016 at 2:05 PM

    Oral Isotretinoin will level early-stage Rynophyma. Your nose will shrink back to its old size. Your pores will shrink up to virtually invisible. Even the veins will go away, as there is a positive vascular effect with Accutane. And you probably only need 1 or 2 mg’s a day to get this effect. I know. I experienced it. That’s the good news. The bad news is permanent side effects and damage to your body like hair loss, joint cracking/popping, arthritis, inflammatory bowel disease, and more. Do searches for these things and read the thousands of user experiences with the same stories that your doctor doesn’t know about. If I knew then what I know now, I NEVER would have taken it. And I did a good bit of research. There are lots of doctors who think this stuff is pretty safe. They have no clue what this stuff does to people.

    Reply
    • Ela says:

      May 16, 2019 at 5:35 PM

      Hallo Todd Dugan,

      Sie haben demnach Ihr Rhinophym im Anfangsstadium mit niedrig dosiertem Isotretinoin heilen können? Den Verlauf schildern Sie auch eigentlich sehr positiv.
      Haben Ihnen die schweren Nebenwirkungen so zugesetzt, dass Sie damit aufgehört haben?
      Ich dachte, 1 oder 2 mg täglich ist doch relativ wenig und kann nicht solche schlimmen Nebenwirkungen verursachen.

      Haben Sie Isotretinoin komplett abgesetzt?
      Ist Ihr Rhinophym wieder gekommen?
      Falls ja, welche Medikation nehmen Sie nun?

      Ich bin eine Frau, habe seit 4-5 Jahren Rosacea und besonders schlimm an der Nase, mit vielen Äderchen, großen Poren und verdickter Haut sowie Hautwucherungen am Kinn und über der Oberlippe. Der Hautarzt hat mir empfohlen, niedrig dosiertes Iso mit 20 mg alle 5 Tage einzunehmen.

      Ich würde gern einen Versuch wagen, nur um zu sehen, ob es überhaupt irgendetwas bewirkt, habe aber natürlich auch Angst vor den Nebenwirkungen.
      Pickel und Pusteln habe ich wenig. Ich verwende Soolantra für die Wangen und Skinorengel (15%) für Nase und Kinn.
      Vielen Dank für Ihre Rückmeldung!

      Gruß aus Deutschland

      Reply