5 replies to this topic

[hotburrito]

I've been doing a little bit of research and I've just realized that I probably don't have traditional "acne" so much as I do pyoderma faciale (scroll to the bottom of the page) which Acne.org defines as this:

Quote

This type of severe facial acne affects only females, usually between the ages of 20 to 40 years old, and is characterized by large painful nodules, pustules, and sores, all of which may scar.^1,6-7 It begins abruptly, and may occur on the skin of a woman who has never had acne before.^6-7 It is confined to the face, and usually does not last longer than one year, but can wreak havoc in a very short time. Doctors often prescribe isotretinoin (Accutane) and systemic corticosteroids are sometimes use an an adjunct.

I pretty much fit all the criteria (and am currently on Accutane), and was just curious if anybody else here thinks they're battling/have previously experienced the same kind of "acne." If so, how did you guys react after your first crazy breakout (mine happened almost literally overnight), or alternatively, how are you dealing with PF at the moment? If you're somebody who has experienced this in the past, do you have any tips to give to "newbies?" Did your derma treat PF any differently than they would regular acne/rosacea?

Lastly, and this is just out of curiosity - I'm currently wondering if (East) Asian females (which I am) might experience PF more commonly than women of other ethnicities. The reason being so that out of my workplace, two other women have probably had PF as well (though they didn't label it as such, from what they've told me, they seem to fit the criteria), and both are Asian... but PF is supposed to be very rare, so it seems odd that out of four Asian females in a single workplace, three would've experienced roughly the same thing. Obviously this is a very small sample size, so I'm just wondering if you guys on Acne.org had any thoughts to share on that.

[porcelainagain]

I am so, so happy to find you. At the urging of my Derm, I had a 2nd opinon on my condition today and whether a biopsy should be done on my face. (No biopsy!! Yea!!)

Then, I heard the words that gave me hope because now I finally know what I have: Pyoderma Faciale. I am a 36 white female who longs to be 'PorcelainAgain'.

I didn't have acne to speak of until Labor Day Weekend. Then, my face exploded and I was in a lot of pain. Cyst upon cyst and now a big red spot on my chin. Complicating all of this, I had an aggressive, gross bacterial infection set in - Ghram Negative Rods so it was rare. (I posted all of this in another long, unanswered post.... I think you can search the site via my username for that whole story. I had to leave the boards for a while because I just couldn't handle this emotionally. The x-rays I was sent to do to ensure bacteria hadn't leached into my chin bones nearly sent me over the edge).

I start Accutane next week and I can't wait!! How long did it take for Accutane to make a difference?

Also, if you have any lingering red spots, then a Photofacial will reduce them greatly. I had one last week and am so glad I did. I'll have another one in 2-3 weeks. Both derms have approved them while taking Accutane.

Ask me anything you want about this. I'll answer it.

[hotburrito]

porcelainagain, on 09 November 2011 - 01:03 PM, said:

I am so, so happy to find you. At the urging of my Derm, I had a 2nd opinon on my condition today and whether a biopsy should be done on my face. (No biopsy!! Yea!!)

Then, I heard the words that gave me hope because now I finally know what I have: Pyoderma Faciale. I am a 36 white female who longs to be 'PorcelainAgain'.

I didn't have acne to speak of until Labor Day Weekend. Then, my face exploded and I was in a lot of pain. Cyst upon cyst and now a big red spot on my chin. Complicating all of this, I had an aggressive, gross bacterial infection set in - Ghram Negative Rods so it was rare. (I posted all of this in another long, unanswered post.... I think you can search the site via my username for that whole story. I had to leave the boards for a while because I just couldn't handle this emotionally. The x-rays I was sent to do to ensure bacteria hadn't leached into my chin bones nearly sent me over the edge).

I start Accutane next week and I can't wait!! How long did it take for Accutane to make a difference?

Also, if you have any lingering red spots, then a Photofacial will reduce them greatly. I had one last week and am so glad I did. I'll have another one in 2-3 weeks. Both derms have approved them while taking Accutane.

Ask me anything you want about this. I'll answer it.

I'm so happy somebody replied to this - I was feeling so lonely, so thank you!

I am so, so sorry you've had to go through this too - the emotional repercussions are enormous, so I completely understand why you had to leave before coming back (I nearly checked myself into psychological counseling). It sucks that you had bacterial infection, as I think that doesn't usually come with pyoderma, and it sounds like your experience was really traumatic in a lot of ways. I genuinely hope you're faring better now. I wouldn't wish this experience on my worst enemy, y'know?

As for me, I had near-perfect skin (like, the kind of skin salespeople would compliment whenever I walked by a makeup counter) all my life before this happened, so you can probably imagine my shock as well. For the first month or so I had no idea what was going on so I stayed calm and tried leaving it alone for the week (I assumed I was having a severe allergic reaction at first), then mild topicals (no help), then antibiotics and steroid creams (oh god side effects), then diet and Chinese herbal remedies and nothing worked so I was all but resigned to living the rest of my life in a state of disfigurement.

The Accutane is working pretty well! By the time I got to the Accutane my acne had already calmed down maybe... 20 percent from the initial outbreak? And now I'd say its calmed down another 40 percent, so I'm about 60 percent on my way to recovery. I'm just finishing the first week of my second month, and it took about two weeks for the Accutane to really kick in for me the first month. For the record, I weigh about 130 lbs and my doctor started me off at 40 mg, and then moved me up to 40/80 mg with alternating days. I hope you have as much luck with Accutane - just don't get discouraged when your Accutane breakout starts and be patient

I've had photofacials in the past but I'm not sure I should do one while I'm on Accutane - my skin was pretty sensitive to begin with (I'm Asian and our skin just tends to be that way) so my face would be mildly irritated after a photofacial even back when I had clear skin. I will definitely talk to my derma about it, though! I'm planning on getting a bunch of work done (including jawline botox) after I'm done my Accutane course - I feel like I need the confidence boost after the pyoderma has brought me so low.

Question: is your derma putting you on any oral corticosteroids?

[porcelainagain]

I wouldn't wish this on anyone either and I'm so happy to find you too. I feel your pain and know exactly what it is like to go from a clear complection to complete horror. I've missed meetings, holed up inside my house, cancelled lunch dates, not wanted to kiss my husband or kids and worn bandages to the gym, grocery store, school PTA meeting and business meeting. Demoralizing!

Outbreak one was done. And then outbreak number two started and it was almost as bad but w/o the bacterial infection. That's when I had my IUD out. When the 2nd outbreak started, I began taking pictures of my face ever day or two just so I could actually see the progress - if there was any - or show my doctor if it was getting worse. The pictures have helped me mentally so, so much. In Sept I took cortizone pills and got a kenalog shot last month, so I don't anticipate any more cortizone during the Accutane, but we'll see.

I'm not scarring, just leaving red spots behind. I'll do another photofacial... He didn't even charge me for the last one. It took a few days to see results, but the redness did lessen!

I will let you know how it goes with Accutane after I start next week. Would love to keep in touch via this thread or we can start another one.

Have a great rest of your day!

[hotburrito]

Ugh, I feel you there. I skipped work for an entire month and I'm pretty sure I did significantly less well on my LSAT than I could have because of my sudden depression, plus I think I turned down about five different travel invitations and countless general social ones. You really just want to hide inside the house all day long and feel sorry for yourself, as pathetic as that sounds.

Wait, so you had two outbreaks? That's awful. How did you figure that your IUD is related to your pyoderma? I ask because I've been meaning to get one for a while (so much more convenient) but now am terrified because of the acne/weight gain it may cause.

I'm not really scarring either, thank god, but the red marks are something awful. And wow, your derma didn't charge you for the last one? That's really nice of him! I'm planning on spending thousands on top of the hundreds I've already spent on all the skin rejuvenation I'll have to do post-Accutane. I'm glad to hear the photofacials are working well for you, though - has your pyoderma died down a lot since the start?

(And sure, send me a message or something - I'd love to hear from you!)

Edited by hotburrito, 09 November 2011 - 02:10 PM.

[porcelainagain]

I figured out that my (second) Mirena was causing the really bad outbreaks because it coincided with my first cycle on the IUD (2 mo after insertion) and then it happened again 26-28 days later. I can't believe that Mirena #2 did this to me, but my doctors and I think it did. I only have one main and one smaller pyoderma cyst right now, but I still have the big red spot on my chin. Red spots remain where the cysts have faded.

I also had 8 in-office LED treatments (alt red and blue) over 4 weeks, and used hand-held LEDs (red and blue) at home at night. Almost nightly. They kept so many, many cysts at bay and made others go away. So glad I did them.

I'm on day four of Accutane. I only have one new pimple -- a regular one next to my nose. Weird b/c it is a pimple, not a cyst. I know the Accutane will push stuff out as it dries you up. I don't know how many more will present before I clear up! If I don't get too, too dry, then my derm will let me do another Photofacial in three weeks. Fingers crossed.