My rosacea is "weird"

I have an extreme case of rosacea. I've had it since I was in my early 20s. I've gone through two treatments of Acutane, various creams and several years of antibiotic treatments. Minocyline or Minocin worked well, but after about 5 years on it I developed an allergy to it.

Fast forward to today. For several years I haven't been to a dermatologist. I decided to have my moles looked at, so I did that today and while she was looking at the moles she was also discussing my rosacea. To give you a visual my face looks like I have a permanent sun burn or that I've put a red mask on my face. Around my eyes it's white and there's a demarcated line between my jaw and neck where it goes from red to white.

Anyway, as the doc was discussing my skin with her assistant she told me my rosacea was "weird." That she's never seen it presented this way. I have to tell you it's not a confidence builder/inspiring when your doc says things like that <eye rolling!>

Good grief! And she offered no options to you or alternate therapies?

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Originally Posted by AppleTree

Good grief! And she offered no options to you or alternate therapies?

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She gave me 2 scripts for topical, but when I went to the pharmacy one was $242 and they had to order the other one. I told them to keep the $242 one. I can't afford that monthly. We'll see how much the other is.

And yes, some docs definitely suck :-)

I haven't seen an allergist but that is a good suggestion.

Accutane worked both times, but it always came back after a couple of years. Accutane is really more fir the acne portion not the redness portion.

Have you gone to a more general doctor? A dermo will only think it's a dermo problem, when it might be something else. Just a thought.

I've actually seen both gp's and derms for years. I've really given up on the rosacea.

The only reason I went yesterday was too have the moles checked, but you can't go to a dermatologist without them wanting to discuss the rosacea. It's easier just to go with it.

On the bright side the moles I thought were weird she said were fine. She did take one for biopsy just to be safe.

I'm so glad my PCP does skin work. That's the only screening I'll subject myself to. No interest whatsoever in seeing a derm who would biopsy every one of my hundreds of moles. Considering the people I've seen coming out of dermatology offices, it looks like they take LITERALLY a shotgun approach! :eek:

+1 on maybe seeing an allergist-immunologist. Even if the diagnosis is correct, isn't there some thinking nowadays that rosacea has an autoimmune component?

lol... reminds me of the time my dad showed his PCP some stuff he has on his hands (and I say stuff because *no one* has been able to figure out exactly what it is....) - the reaction he got... "That's peculiar..."

:rolleyes: I get a pretty unusual presentation of dyshidrosis on my hands - little bumps that develop into fluid filled blisters in humid weather, especially when I wear gloves, on the backs of my hands, with no redness and little or no itching - (usual presentation is scaliness on the fingers and palms in DRY weather) - could that be what your dad has?

nah- he has thick, dry, really itchy skin on his hands that cracks at times. The current thinking is that it's a contact allergy to some of the stuff in soap, caused by long term exposure to some pretty harsh cleaning agents that were used where he used to work - he said a lot of the guys there had similar problems.

Even though he retired years ago - like 17 or 18, he's still got it, though it seems to be getting a little milder over time. He won't touch bar soaps, which make it worse and has to change hand creams all of the time - he says most things he's been prescribed work for a little while, then gradually become ineffective, so he just has to keep rotating through.

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Originally Posted by thekarens

I have an extreme case of rosacea. I've had it since I was in my early 20s. I've gone through two treatments of Acutane, various creams and several years of antibiotic treatments. Minocyline or Minocin worked well, but after about 5 years on it I developed an allergy to it.

Fast forward to today. For several years I haven't been to a dermatologist. I decided to have my moles looked at, so I did that today and while she was looking at the moles she was also discussing my rosacea. To give you a visual my face looks like I have a permanent sun burn or that I've put a red mask on my face. Around my eyes it's white and there's a demarcated line between my jaw and neck where it goes from red to white.

Anyway, as the doc was discussing my skin with her assistant she told me my rosacea was "weird." That she's never seen it presented this way. I have to tell you it's not a confidence builder/inspiring when your doc says things like that <eye rolling!>

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About five years ago I was told by the dermatologist that I had rosacea and not to worry about it. Over the years nothing worked on my "rosacea" and just keep getting worst to the point that my face would bleed :eek: at the same time I was having some other health issues and doctors couldn't tell me the cause. So in 2011 I was finally diagnosed with Lupus :( As others suggested have a doctor do other studies to ruleout more serious conditions ;)

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Originally Posted by bellissima

About five years ago I was told by the dermatologist that I had rosacea and not to worry about it. Over the years nothing worked on my "rosacea" and just keep getting worst to the point that my face would bleed :eek: at the same time I was having some other health issues and doctors couldn't tell me the cause. So in 2011 I was finally diagnosed with Lupus :( As others suggested have a doctor do other studies to ruleout more serious conditions ;)

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Yikes, that's terrible :(

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Originally Posted by OakLeaf

I'm so glad my PCP does skin work. That's the only screening I'll subject myself to. No interest whatsoever in seeing a derm who would biopsy every one of my hundreds of moles. Considering the people I've seen coming out of dermatology offices, it looks like they take LITERALLY a shotgun approach! :eek:

+1 on maybe seeing an allergist-immunologist. Even if the diagnosis is correct, isn't there some thinking nowadays that rosacea has an autoimmune component?

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I've never had a dermatologist biopsy anything unless I asked them to, and even then they sometimes say it's not necessary.

I do find that dermatologists and PCPs usually think that my various skin rashes are contact dermatitis, even when I can tell that something internal is causing it.

I was diagnosed with the beginnings of rosacea several years ago and tried medications...but was not real comfortable with possible side effects for lots of things, including cancer. About 15 months ago, I began working with a personal trainer to strengthen my core for various reasons. My personal trainer recommended an interesting diet. Eliminate all processed food, sugar, bread, and pasta, no pop, diet pop, limited fruit juices. Eat as much nitrate free meat, fresh and cooked veggies as possible. I also eat yogurt, cheeses, fruits, and TONS of nuts! Within 10 minutes of waking up, I take 1TBSP of Olive oil or Carlson's Cod Liver oil, followed by a shot of pomegranate juice. In training I have lifted weights twice a week for about 45 minutes. I have gone down 4 pants sizes, can do 30 push-ups (I am 58 and have never been able to do even one push-up!) and my skin looks like I am twenty or thirty again! The dark circles are gone from under my eyes and my skin is literally glowing and dewy without a hint of rosacea! (I always wondered what they meant on commercials when they said glowing and dewy skin) Might I add, that even while my new best friends are BACON, EGGS, AND CASHEWS, my cholesterol numbers have righted themselves!
One morning I looked in the mirror at my face and my incredibly toned physique, and realized that I am walking proof that You ARE What you EAT!

Nah.. That's just so unprofessional..

or Maybe she's trying to sell her other services.