Comments on: Treating Rhinophyma with Accutane (roaccutane, isotretinoin)

By: David Pascoe

David Pascoe — Wed, 19 Jan 2011 12:02:11 +0000

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

Peter H — Wed, 19 Jan 2011 11:33:38 +0000

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

sami from Syria — Wed, 20 Oct 2010 00:04:45 +0000

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

Peter H — Mon, 18 Oct 2010 10:41:54 +0000

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

sami from Syria — Wed, 13 Oct 2010 08:45:20 +0000

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

David Pascoe — Tue, 31 Aug 2010 01:47:00 +0000

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

By: Peter H

Peter H — Mon, 30 Aug 2010 09:41:59 +0000

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

By: David Pascoe

David Pascoe — Thu, 18 Mar 2010 03:18:43 +0000

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.

By: mik

mik — Fri, 28 Aug 2009 09:43:33 +0000

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?

By: Laima Rastenis

Laima Rastenis — Fri, 10 Jul 2009 20:00:06 +0000

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