Can You Please Help Me Solve a Mean and Nasty Mystery Skin Condition?
January 10, 2011 1:32 PM Subscribe
Skinfilter: Help! Help! Help! About 10 years ago, I started suffering from extreme dryness and peeling on my face, which got so bad that my skin would feel like it was burning. I'm female, and I was in my early 30s at the time. When I went to the dermatologist, he diagnosed sebborheic dermatitis based on my (long-standing) hypothyroid condition and peeling in my eyebrows. He treated it with Elidil, and told me to go off it when the sebborheic dermatitis remitted. But it never did. Over time, I’ve come to think the diagnosis was wrong, but I’ve yet to hear a better theory. Maybe you have one?
The Treatment: When I went back to see the dermatologist a year later, he told me the lack of remission didn’t matter and to keep using Elidil as needed. (He also said he’d worked on the original studies and the black box label was nothing to worry about.) So I have now been using Elidil for nearly 10 years. About 2 years ago, I added .25% trentinoin to the mix, to attempt to make my skin easier to deal with, and this has been helpful, but it’s not solved the problem.
The Problem: Whenever I have tried to stop using Elidil, my skin has erupted with:
• red bumps on the cheeks,
• flattened bumps (more like lumps) on the forehead,
• some minor but hard-to-kick acne,
• obvious stretched pores,
• obvious uneven texture,
• redness from the irritation from (probably?) subcutaneous stretching (swelling) and acne, with some veinyness in my cheeks,
• closed white comodones, which are all but impossible to get rid of.
The central problem seems to be an extreme and very emphatic lack of skin shedding, exemplified by the fact that I
• hardly sweat at all, and
• moisturizers won’t sink in unless they’re very liquefied, and even then I tend to spend about half my day looking “shiny” so there’s enough moisturizer left on my face later in the day, so it won’t peel.
For all that, my suspicion is that it’s just the top layer that is dry, and underneath my skin is still quite greasy, as it was in my adolescence.
Anyway, note that the one improvement in my condition over ten years is that my face used to start showing symptoms within hours of waking, washing (or even not washing), and not using Elidil. More recently, I’ve been able to go as long as 36 hours without symptoms or medications.
What It Isn’t: It’s worth saying that I do not believe I’m describing rosacea. From what I’ve read, I think they’ve found Elidil to be ineffective for it—and it clearly does have an enormous effect on my skin. But also because my problems do not occur in a butterfly pattern, and if anything I’m too pale: I never flush.
When My Skin Looks Its Best
My skin looks its very best, and needs the least manipulation, in very hot humid weather. Unfortunately, I’m in the inclement Northeast right now. When it’s not hot and humid, and when I use Elidil along with a buffer of two (!) moisturizers and the trentinoin on top, my skin looks pretty clear, keeping the bumps and lumps either dormant or fairly flat and only visible from very close up.
Meds & Other Health Issues
I suffered from untreated hypothyroidism for about half my life–although it has been well-treated since my late thirties.
I suffer from strong mold and wheat allergies.
I take thyroid medication and amiloride (a diurhetic) daily.
I recently found I was wildly allergic to benzoyl peroxide: the tiniest dab swelled my face for days.
Make-Up + Sunscreen
I do wear makeup because I become unutterably depressed if I can see blatant traces of this affliction on my face: tinted moisturizer, blush, and powder (all recommended by Paula Begoun). The first and last contain sunscreen. I recently switched from using Paula’s Choice tinted moisturizer to a Sephora brand because I realized it was the one thing I’d been using consistently for all ten years, and I thought maybe I was allergic to the titanium dioxide or one of the colorants. The change seemed to make no difference.
What I’ve Tried
In general, I follow Paula Begoun’s advice, and I have used many of her products.
In addition, I have tested countless moisturizers (Cerave is a favorite), and recently changed cleanser. None of that’s made a difference either.
Nor has early use of Nizoral, or any other product that’s used to treat seborrheic dermatitis.
All the hydroxies (alpha and beta) and the tretinoin are way too strong for me without the dilution of Elidil + moisturizers. None of which helps matters. I definitely need something to help shed my top layer daily.
*
I know you are not doctors, but I’m desperate to figure out what this is, because I am quite sure the original diagnosis is bunk, and no doctor’s yet to come up with any sort of replacement theory. (I’m also really, really broke).
Anybody have any ideas!?!
All thoughts, stories, clues, notions would be dearly appreciated!
The Treatment: When I went back to see the dermatologist a year later, he told me the lack of remission didn’t matter and to keep using Elidil as needed. (He also said he’d worked on the original studies and the black box label was nothing to worry about.) So I have now been using Elidil for nearly 10 years. About 2 years ago, I added .25% trentinoin to the mix, to attempt to make my skin easier to deal with, and this has been helpful, but it’s not solved the problem.
The Problem: Whenever I have tried to stop using Elidil, my skin has erupted with:
• red bumps on the cheeks,
• flattened bumps (more like lumps) on the forehead,
• some minor but hard-to-kick acne,
• obvious stretched pores,
• obvious uneven texture,
• redness from the irritation from (probably?) subcutaneous stretching (swelling) and acne, with some veinyness in my cheeks,
• closed white comodones, which are all but impossible to get rid of.
The central problem seems to be an extreme and very emphatic lack of skin shedding, exemplified by the fact that I
• hardly sweat at all, and
• moisturizers won’t sink in unless they’re very liquefied, and even then I tend to spend about half my day looking “shiny” so there’s enough moisturizer left on my face later in the day, so it won’t peel.
For all that, my suspicion is that it’s just the top layer that is dry, and underneath my skin is still quite greasy, as it was in my adolescence.
Anyway, note that the one improvement in my condition over ten years is that my face used to start showing symptoms within hours of waking, washing (or even not washing), and not using Elidil. More recently, I’ve been able to go as long as 36 hours without symptoms or medications.
What It Isn’t: It’s worth saying that I do not believe I’m describing rosacea. From what I’ve read, I think they’ve found Elidil to be ineffective for it—and it clearly does have an enormous effect on my skin. But also because my problems do not occur in a butterfly pattern, and if anything I’m too pale: I never flush.
When My Skin Looks Its Best
My skin looks its very best, and needs the least manipulation, in very hot humid weather. Unfortunately, I’m in the inclement Northeast right now. When it’s not hot and humid, and when I use Elidil along with a buffer of two (!) moisturizers and the trentinoin on top, my skin looks pretty clear, keeping the bumps and lumps either dormant or fairly flat and only visible from very close up.
Meds & Other Health Issues
I suffered from untreated hypothyroidism for about half my life–although it has been well-treated since my late thirties.
I suffer from strong mold and wheat allergies.
I take thyroid medication and amiloride (a diurhetic) daily.
I recently found I was wildly allergic to benzoyl peroxide: the tiniest dab swelled my face for days.
Make-Up + Sunscreen
I do wear makeup because I become unutterably depressed if I can see blatant traces of this affliction on my face: tinted moisturizer, blush, and powder (all recommended by Paula Begoun). The first and last contain sunscreen. I recently switched from using Paula’s Choice tinted moisturizer to a Sephora brand because I realized it was the one thing I’d been using consistently for all ten years, and I thought maybe I was allergic to the titanium dioxide or one of the colorants. The change seemed to make no difference.
What I’ve Tried
In general, I follow Paula Begoun’s advice, and I have used many of her products.
In addition, I have tested countless moisturizers (Cerave is a favorite), and recently changed cleanser. None of that’s made a difference either.
Nor has early use of Nizoral, or any other product that’s used to treat seborrheic dermatitis.
All the hydroxies (alpha and beta) and the tretinoin are way too strong for me without the dilution of Elidil + moisturizers. None of which helps matters. I definitely need something to help shed my top layer daily.
*
I know you are not doctors, but I’m desperate to figure out what this is, because I am quite sure the original diagnosis is bunk, and no doctor’s yet to come up with any sort of replacement theory. (I’m also really, really broke).
Anybody have any ideas!?!
All thoughts, stories, clues, notions would be dearly appreciated!
I suffer from strong mold and wheat allergies.
For me, there's a direct correlation between eating foods I'm allergic to and my skin flaring up. I saw multiple dermatologists and internists who were stumped by my skin. After I got allergy testing and stopped eating those foods, my skin cleared up within three days. I was completely dumbstruck and horrified that it was that simple. Even now, I watch carefully for skin changes because it's often a sign that I'm developing a new allergy.
So I guess my question is- how well are your allergies controlled? Do you avoid wheat completely, or is it sneaking into your diet?
I should add that IANAD, and I haven't heard of many other people experiencing this problem the way I do. But it is certainly cheap to do an elimination diet and see what happens!
posted by Mouse Army at 2:07 PM on January 10, 2011
For me, there's a direct correlation between eating foods I'm allergic to and my skin flaring up. I saw multiple dermatologists and internists who were stumped by my skin. After I got allergy testing and stopped eating those foods, my skin cleared up within three days. I was completely dumbstruck and horrified that it was that simple. Even now, I watch carefully for skin changes because it's often a sign that I'm developing a new allergy.
So I guess my question is- how well are your allergies controlled? Do you avoid wheat completely, or is it sneaking into your diet?
I should add that IANAD, and I haven't heard of many other people experiencing this problem the way I do. But it is certainly cheap to do an elimination diet and see what happens!
posted by Mouse Army at 2:07 PM on January 10, 2011
IANAD But I Do Love Cutaneous Conditions. Some things that come to mind:
- Have you ever been prescribed oral doxycycline OR oral retin-a? Each of these individually can make a HUGE difference in certain conditions. I mention the doxy because...
- The "lumps" and "bumps" sound a bit like sebaceous cysts, which can sometimes seem acne-like. Oral doxy is sometimes good for managing these.
- The retin-a basically works by making your skin go BATSHIT CRAZY with cell production/turnover... basically pushing the bad stuff outwards and pushing (hopefully) nice, new skin materials upwards. Takes a few weeks to work (during which your skin may be hellish), comes with a host of crappy side-effects and hassles (sun sensitivity and having to be on 10,000 forms of birth control, to name a few), but many people say it changes their life.
- Not sure if I saw anything in your write-up about exfoliation, but exfoliating the crap out of yourself one night a week, followed by a nice slather of non-comedogenic moisturizer before bed, might do some good, too... get the icky surface stuff off of there but ALSO protect the newly-exposed sensitive skin to prevent it, too, from getting icky.
posted by julthumbscrew at 2:31 PM on January 10, 2011
- Have you ever been prescribed oral doxycycline OR oral retin-a? Each of these individually can make a HUGE difference in certain conditions. I mention the doxy because...
- The "lumps" and "bumps" sound a bit like sebaceous cysts, which can sometimes seem acne-like. Oral doxy is sometimes good for managing these.
- The retin-a basically works by making your skin go BATSHIT CRAZY with cell production/turnover... basically pushing the bad stuff outwards and pushing (hopefully) nice, new skin materials upwards. Takes a few weeks to work (during which your skin may be hellish), comes with a host of crappy side-effects and hassles (sun sensitivity and having to be on 10,000 forms of birth control, to name a few), but many people say it changes their life.
- Not sure if I saw anything in your write-up about exfoliation, but exfoliating the crap out of yourself one night a week, followed by a nice slather of non-comedogenic moisturizer before bed, might do some good, too... get the icky surface stuff off of there but ALSO protect the newly-exposed sensitive skin to prevent it, too, from getting icky.
posted by julthumbscrew at 2:31 PM on January 10, 2011
I would try Mouse Army's elimination diet advice - and I'd probably couple that with a visit to an allergist. If money is too tight for that, maybe someone here has ideas for an elimination diet concept.
What about a steam type treatment, followed by a gentle exfoliation? I am thinking the face above gently boiling water, followed by a mild apricot scrub as needed, followed by a very gentle moisturizer for ultra sensitive skin. My gut reaction is that there's too much being topically applied - I get how it all makes sense, but all of that information is saying allergies to me/some kind of reaction, either to what you are eating or to what you are applying.
posted by mrs. taters at 2:31 PM on January 10, 2011
What about a steam type treatment, followed by a gentle exfoliation? I am thinking the face above gently boiling water, followed by a mild apricot scrub as needed, followed by a very gentle moisturizer for ultra sensitive skin. My gut reaction is that there's too much being topically applied - I get how it all makes sense, but all of that information is saying allergies to me/some kind of reaction, either to what you are eating or to what you are applying.
posted by mrs. taters at 2:31 PM on January 10, 2011
What about a steam type treatment, followed by a gentle exfoliation? I am thinking the face above gently boiling water,
Hot water is very drying to skin. Stick with lukewarm. An easy, extremely gentle exfoliant that is cheap to boot is extra-fine, caster, or baker's sugar ( all the same thing) in jojoba oil. Massage it gently into your skin, and rinse with a lukewarm washcloth. some people think that glycolic acid in the sugar helps your skin exfoliate, I don't know if that's true, but the mechanical action of the sugar crystals certainly does. Jojoba is a light oil that generally does not leave a greasy film.
If your skin is best in humid weather, look for skin products with humectants in them.
posted by oneirodynia at 2:51 PM on January 10, 2011 [1 favorite]
Hot water is very drying to skin. Stick with lukewarm. An easy, extremely gentle exfoliant that is cheap to boot is extra-fine, caster, or baker's sugar ( all the same thing) in jojoba oil. Massage it gently into your skin, and rinse with a lukewarm washcloth. some people think that glycolic acid in the sugar helps your skin exfoliate, I don't know if that's true, but the mechanical action of the sugar crystals certainly does. Jojoba is a light oil that generally does not leave a greasy film.
If your skin is best in humid weather, look for skin products with humectants in them.
posted by oneirodynia at 2:51 PM on January 10, 2011 [1 favorite]
Your skin sounds like my skin, only my skin is olive and generally pretty oily except in winter when it gets rough and scaly.
This is what I've figured out about my own skin so far:
Uneven texture: In the winter, my skin gets thick, rough and bumpy. Exfoliating with glycolic or alpha hydroxy acid thins it out and makes it smooth again. I've found that using Differin (when I remember to) keeps it smooth. I've also noticed that washing my face with hard water makes my skin get thicker and rougher, but I've found that cleansing with a toner (I like Mario Badescu) after washing my face helps with that.
I get itchy flattened bumps on my jaw, forehead and cheeks when I wear wool or wear cosmetics that contain lanolin. I've concluded they are hives in response to a hypersensitivity. You already have two known allergies, so you may have a sensitivity to something in one of your cosmetics.
Stretched pores: They get clogged with dead skin and oil. Washing my face regularly and using Differin (Many people find it gentler than Retin A) have helped keep my pores clear. Clinique Pore Minimizer Instant Perfector is a silicone based spackle that not only makes my pores less noticeable, it soaks up oil and helps keep my skin clear when I'm not using Differin.
Differin and/or acid exfoliation + silicone based primer helps keep the zits at bay, but if I've encountered wool I still get painful sebacious cysts on my cheeks.
I use prescription strength Nizoral for my flakey scalp (seborrheic dermatitis) and it seems to help a little, but I can't say I'm too impressed with the results.
Which tinted moisturizer do you wear? I ask because I used to wear Clinique City Block, and went through a terrible bout of itchy and painful flattened bumps on my face until it finally occured to me to stop using it. Then they went away. I'm not sure what I had a sensitivity to, but I know that my skin responds well to simple silicone gels without SPF.
posted by ladypants at 2:53 PM on January 10, 2011
This is what I've figured out about my own skin so far:
Uneven texture: In the winter, my skin gets thick, rough and bumpy. Exfoliating with glycolic or alpha hydroxy acid thins it out and makes it smooth again. I've found that using Differin (when I remember to) keeps it smooth. I've also noticed that washing my face with hard water makes my skin get thicker and rougher, but I've found that cleansing with a toner (I like Mario Badescu) after washing my face helps with that.
I get itchy flattened bumps on my jaw, forehead and cheeks when I wear wool or wear cosmetics that contain lanolin. I've concluded they are hives in response to a hypersensitivity. You already have two known allergies, so you may have a sensitivity to something in one of your cosmetics.
Stretched pores: They get clogged with dead skin and oil. Washing my face regularly and using Differin (Many people find it gentler than Retin A) have helped keep my pores clear. Clinique Pore Minimizer Instant Perfector is a silicone based spackle that not only makes my pores less noticeable, it soaks up oil and helps keep my skin clear when I'm not using Differin.
Differin and/or acid exfoliation + silicone based primer helps keep the zits at bay, but if I've encountered wool I still get painful sebacious cysts on my cheeks.
I use prescription strength Nizoral for my flakey scalp (seborrheic dermatitis) and it seems to help a little, but I can't say I'm too impressed with the results.
Which tinted moisturizer do you wear? I ask because I used to wear Clinique City Block, and went through a terrible bout of itchy and painful flattened bumps on my face until it finally occured to me to stop using it. Then they went away. I'm not sure what I had a sensitivity to, but I know that my skin responds well to simple silicone gels without SPF.
posted by ladypants at 2:53 PM on January 10, 2011
Perhaps this is not the suggestion you want to hear, but I'm going to go ahead and make it anyway: have you tried going to another dermatologist? I would suggest seeing someone at a larger medical facility like a teaching hospital. Someone with a larger patient population may have seen more things and may be able to more readily diagnose your skin. Talking to people with dermatological issues, I've noticed that many people are frustrated by dermatologists and their inability to diagnose and cure.
Obviously this isn't something that can happen when you're broke/without insurance.
From one person with skin issues to another: this sucks and I'm sorry you're dealing with it.
posted by sciencegeek at 3:08 PM on January 10, 2011 [1 favorite]
Obviously this isn't something that can happen when you're broke/without insurance.
From one person with skin issues to another: this sucks and I'm sorry you're dealing with it.
posted by sciencegeek at 3:08 PM on January 10, 2011 [1 favorite]
Have you tried cleansing with oil? Yes, this sounds ridiculous, but it is "a thing." (See, for instance, here, though there are a million other sources). I have much milder problems than you, but I also get the flakey skin in the winter that no amount of toners, abrasive exfoliants, etc. will get rid of. I use a combination of castor oil and jojoba oil (two products other people have mentioned). Massaging these oils into your face for several minutes (at least 7) will help to slough off the dead skin while slowly and permanently moisturizing your face. And, since you do have other skin issues, the oil alone (without something abrasive like sugar or salt) can be gentler. Jojoba oil, in particular, can be helpful for pores (apparently).
Of course, some people do not do well with OCM, so there is that caveat. Also, while I find it to be generally positive, I just want to clarify that I am not one of the OCM-loving mob, so please don't think this is proselytizing...
posted by oohisay at 4:11 PM on January 10, 2011 [1 favorite]
Of course, some people do not do well with OCM, so there is that caveat. Also, while I find it to be generally positive, I just want to clarify that I am not one of the OCM-loving mob, so please don't think this is proselytizing...
posted by oohisay at 4:11 PM on January 10, 2011 [1 favorite]
This thread is closed to new comments.
Again, IANAD. Good luck!
posted by Admiral Haddock at 2:05 PM on January 10, 2011