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  • #16
    Well, the one word that jumps out that seems to ring true for all of us is 'STUBBORN'!!!

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    • #17
      Originally posted by EK1 View Post

      +There are kinda different types of flakes if you will, ones that are like sticking out that you can to pull/scrape at to remove and others are more flat like a layer of skin. No matter what, whenever i run my fingers down my skin, some flakes will come off. Hence why i never scratch or touch my skin during the day.
      Yes!

      I'll be keen to see how you go with the Clarifoam - keep us posted please.

      Aside from the stubborn nature of these devil flakes, we do seem to all have very similar experiences going on with our faces particularly with our intolerance to topicals.

      Does everyone here experience P&P's as well as flushing with their Rosacea?

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      • #18
        Yep, the whole shabang here - flushing, p&ps, blotchy, wooo!

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        • #19
          Originally posted by EK1 View Post
          Yep, the whole shabang here - flushing, p&ps, blotchy, wooo!
          haha...me too. i figure if you're going to have one thing, you may as well go all out and show-off with it.

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          • #20
            EK1 is the sulfa/sulphur combo helping with the papules?

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            • #21
              a little.

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              • #22
                OK

                Monte - Thanks for posting up the photos, it always makes such a difference. My first reaction is to think that my case looks different. You described the flakes in your case as like "a fine white sand" and also as "waxy", so I am guessing that the white flakes that appear on the photos are not rough, dry, ragged skin, but rather this 'sand' - am I right in saying that? Also, is the picture taken soon after washing or not? If I were to wash my skin with a cleanser and take a picture after, it may look a little like that - areas would show as ragged, speckled, white, just because the skin would be dry, parched, not elastic etc.

                Oh also - so the Elidel doesn't lead to breakouts like moisturisers do?

                And just to be clear on how it started, was it at the same time as the steroid rosacea, or something that appeared a while after?


                Sarahjohn - So, let me see.

                -Yes, I have a particular build-up at the nose but I think this is just because when washing it is a less exposed area. I think this would occur in any case of, like, dead skin, so not sure it suggests anything about a cause.
                -Yes, a yellowy appearance when it builds up, but I think this is just because, if it builds up it also gets dirty, plus the addition of skin-oil (Lovely ).
                -Mine did develop while on antibiotics (I am still on them) and for a long time I have wondered about a connection. However in your case, if you are now off them, I should have thought it rules it out, no?
                -I too have a scalp connection and this has turned me towards seb-derm many times. But I don't think it is seb-derm. The fact that I have issues on the scalp is also something that makes me think the flakes are not connected with rosacea-inflammation, because my scalp doesn't have rosacea. But maybe there's more than one thing going on...
                - Did it really develop over a day or two? And then just set in? That would be very odd.
                - The variation (less visible first thing in the morning; improved by going in different environments) seems different from me.


                EK1 - You know, many people with seb derm have no success with anti-fungals, whether topical or oral, but do respond to hydrocortisone, so I wonder...
                - What do you mean, you can rub till the cows come home? I assume you're not flakes 'all the way down' .
                - Yeah, I get that thing with the metro.
                - Not sure about your different kinds of flakes. I mean, in my case I suppose that, if I were to rub/pick/wipe off all the flakes, there would still be, underneath, the damaged, incomplete dry skin, which would show a ragged flaky appearance.
                - The clarifoam, is it at all harsh? Has it led to any flaring of the rosacea?

                *

                What do you guys all use to wash your skin?

                *

                I still don't really feel I know whether we're dealing with the same thing. I think that we may all be suffering from a skin barrier that is having trouble forming - hence, instead of proper, elastic skin it ends up as dry dead flakes. And if the barrier isn't there, you're bound to get dryness (because it doesn't keep moisture in) and sensitivity and hence rosacea-problems (because it can't keep out irritants). Not sure how much this says about the cause, though.

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                • #23
                  To answer your questions:

                  - i mean i can continue rubbing and rubbing and while flakes come off and it gets somewhat smoother, it still continues to flake. I have rubbed for 20 mins and there were still flakes coming off. No amount of rubbing gets rid of them all, so it's not like just flakes sitting on top that you can remove with a cloth. It's the skin.

                  - the clarifoam doesn't burn when i put it on or anything, but i find i get a bit aggravated when i wash it off. (and i have to, because leaving it on led to a rosacea flare). It's the only thing that has been able to smooth my skin so far without burning my face off. But of course, i have to use it every 2nd night and sometimes, like today, i skipped tonight because i felt a bit dry and didn't want to dry my skin out more.

                  - Well for the different types of flakes part i mean there are ones that stick right up and are noticeable, and others that are there but only really noticeable when the skin stretches. Also putting cream on top helps to mat them down and make them not noticeable.

                  - the interesting part is that i responded to the hydrocortisone the first time i used it, but when i used it again mixed with ketocanozle (an antifungal) it didn't do anything....What's up with that?

                  - oddly, mine NEVER look yellow....

                  - now how do we fix this skin barrier..... i tried that "impruv" cream that's supposed to be for this and it did nothing (this was like 2 years ago).

                  - ive been told by a derm that seb derm can effect the whole face, but wouldn't that be more of a layer type feeling? So confusing!

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                  • #24
                    also i wash my skin with la roche posay toleriane

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                    • #25
                      Oh I forgot:

                      Sarahjonjon - This clearing up of your scalp issues when you went to SE Asia, have you investigated this at all? Is The scalp thing similar to what now affects your face?

                      I can't help having this make me think about the influence of the sun, as a possibility.

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                      • #26
                        I'm also a flaker

                        My flakes are worse around my nose, where my rosacea is worse, i also get then on my cheeks and forehead. Interestingly my rosacea is very benign on my forehead but the flakes are still their in force.

                        For me it's definitely not dryness, my skin seems to pump out oil. The flakes are much more obvious after i've had a wash and if i used moisteriser they disappear from view. But their still there just hidden. If i rub my face they get disturbed and become visible again.

                        I'm with TheMediumDog in that i think my skin barrier is not working which makes my face so sensitive. Harsh washing doesn't help, it actually makes it worse. I've also noticed that if i don't wash the flakes build up. One time i actually thought the flakes were my bodies way of trying to protect my skin and build up the barrier. So i experimented with not washing. I got to 2 1/2 days and gave up, i was very oily and had two very deep rooted pustules on their way...not good!

                        I never used to get any flakes until my rosacea started.

                        I'm sure rosacea and the flakes are linked. The question is are the flakes a symptom of rosacea or another condition which rosacea make us more vulnerable to or maybe the flakes and rosacea are themselves just symptoms of another problem.

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                        • #27
                          My flakes/skin has a rough feel to it right after showering and I guess as I get oily during the day, it becomes smooth and not a noticeable.....my pics were taken right after showering.

                          Elide gave me great relief and no breakouts whatsoever but it wasn’t curing anything so it was best to stop....

                          Regarding Rosacea, the flakes came about after a Prednisone rebound….when the redness and swelling subsided I was left with the flakes.

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                          • #28
                            Originally posted by Spav View Post
                            Interestingly my rosacea is very benign on my forehead but the flakes are still there in force.
                            Yes, that occurs with me too! It is one of those things that makes me think there is a disconnect between the rosacea and whatever-this-is. Like you, I'm sure they are connected, but it doesn't seem to be a simple matter of those areas which are most red/papule prone/flushy being also most flaky. Then again, I suppose that the 'very red' areas are just the places where the skin is thinnest or there is the highest concentration of blood vessels - the same things (i.e. physiological abnormalities) may be going on in the other areas, but are just less visible. So it could still be a matter of inflammation disturbing the normal barrier-forming processes.

                            EK1 - I suppose its possible that, when the ketoconazole was mixed with the hydrocortisone, it irritated the skin, masking any benefits from the steroid? I don't know really.

                            As for how we go about fixing the barrier, yes, that is the crucial question. I would personally avoid cosmetics companies' promotion-heavy 'solutions', probably especially anything that says "barrier" in it. They're normally useless.

                            I've looked a little into the biological processes that go on to form the outer skin layer and (as you'd expect) its extremely complicated (there's an easy, mostly visual presentation here with another on the whole epidermis). But a key point is that, as my derm said to me, forming a barrier is just what the skin does. There is a tightly-genetically-controlled process that happens. In other words, short of some genetic abnormality (which I can hardly believe suddenly occurs) if you give the skin what it needs and don't obsruct it in any way, it will form properly. Hence the focus on inflammation, because this would obstruct the processes. (The other obvious candidate is a deficiency of some kind. Vitamin D is one of the key prerequisites for the processes to occur properly, which is why I've had my nose in it. But its just a guess).

                            I suppose that, in this context, your hydrocortisone experience, EK1, is quite interesting, because steroids are such 'broad spectrum' anti-inflammatories. I myself took prednisone (an oral steroid) for a week once, and I'm pretty sure that along with a big drop in redness etc, the flaking improved.

                            Reducing redness without reducing flakes (such as Monte's Elidel experience) wouldn't necessarily disprove this because it may be that it only cuts out a portion of the inflammation (that connected with the redness), or is too small to notice.

                            Spav wrote:

                            One time i actually thought the flakes were my bodies way of trying to protect my skin and build up the barrier. So i experimented with not washing.
                            I think it is. Or rather (to get rid of the athropomorphising) I think that the barrier-forming processes are occurring, but just with some crucial missing component. I think this is our skin doing its impression of a skin-barrier.

                            There is a mechanism in the barrier-formation process (involving a change in Calcium gradient) whereby, if it is compromised/broken/disturbed in any way, various signals are sent out to speed up the re-formation process. I think that (at least in my case) this vicious cycle is part of what is happening - but always without the crucial means to form a proper barrier.

                            I have actually experimented with not washing for rather a long time. The flakes kept on a-comin' until there was quite a thick crust (yum yum, I know). When I eventually scraped/picked this off (some skincare routine, right!?) the skin actually looked fairly normal underneath. For a second I thought I'd cracked it, but within a few washes I was back in the normal cycle.

                            Spav wrote:

                            For me it's definitely not dryness, my skin seems to pump out oil.
                            Yes, me too; this is a very prominent part of my condition.

                            This seems to be a bit of a common link. It is interesting that, EK1, this was diagnosed as due, in you, to a hormone imbalance. I know you subsequently had them all found to be normal....I just wonder if there is some other link. In my own case, I've mentioned that one connection was that my problems began after I stopped smoking (though I could be inventing a connection) and I've wondered if this might have knocked something out of balance. ...Thing is, one would expect all sorts of other bodily symptoms if there was some major imbalance... I dunno. Anyone have any other major non-skin symptoms? I've thought I've had a great deal of mouth-sores (which is still the skin, I suppose) and maybe a slight increase in allergy-proneness. But I could be making it up.
                            Last edited by TheMediumDog; 13 June 2009, 06:17 AM.

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                            • #29
                              Have you considered acid levels, MD?

                              http://www.ncbi.nlm.nih.gov/pubmed/1...?log$=activity

                              Apparently some skin conditions - not sure which - tend to lessen the acidity levels in the skin.

                              Do you all live in hard water areas (theoretically bad) perhaps? Actually, from memory, I don't think you do, MD.

                              http://www.morphyrichards.co.uk/Down..._water_Map.pdf

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                              • #30
                                The thing is that in my case, the flakiness has remained the same while I have moved between several different areas. I have also changed my skincare routine quite a number of times, presumably therefore having an effect on the skin's acidity.

                                I think, in the terminology, acidity may be a dependent variable in my case. In other words a load of stuff is going on which is buggering up the barrier, but although this probably then throws its acidity out of normal range, (which may create secondary problems, I don't know) simply trying to fix the acidity won't help because it doesn't go 'deep' enough; its not the underlying cause.

                                That's my suspicion, at any rate.

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