Comments on: Treating Rhinophyma with Accutane (roaccutane, isotretinoin) http://rosacea-support.org/treating-rhinophyma-with-accutane.html Where the rosacea community meets to support each other Wed, 23 May 2012 15:17:41 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: raphael n http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-99070 raphael n Wed, 09 May 2012 18:10:32 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-99070 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 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

]]> By: Juan Venado http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-91826 Juan Venado Sun, 11 Mar 2012 15:33:29 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-91826 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. 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.

]]> By: Peter H http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-91821 Peter H Sun, 11 Mar 2012 12:08:42 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-91821 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! 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!

]]> By: Juan Venado http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-90029 Juan Venado Tue, 21 Feb 2012 14:54:06 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-90029 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. 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.

]]> By: David Pascoe http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-49582 David Pascoe Wed, 19 Jan 2011 12:02:11 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-49582 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. 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.

]]> By: Peter H http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-49581 Peter H Wed, 19 Jan 2011 11:33:38 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-49581 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! 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!

]]> By: sami from Syria http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-45303 sami from Syria Wed, 20 Oct 2010 00:04:45 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-45303 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. 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.

]]> By: Peter H http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-45249 Peter H Mon, 18 Oct 2010 10:41:54 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-45249 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 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

]]> By: sami from Syria http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-45172 sami from Syria Wed, 13 Oct 2010 08:45:20 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-45172 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. 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.

]]> By: David Pascoe http://rosacea-support.org/treating-rhinophyma-with-accutane.html/comment-page-1#comment-44388 David Pascoe Tue, 31 Aug 2010 01:47:00 +0000 http://rosacea-support.org/treating-rhinophyma-with-accutane-roaccutane-isotretinoin.html#comment-44388 Thanks for your updates Peter. Great to hear that you are getting some good results. Thanks for your updates Peter. Great to hear that you are getting some good results.

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