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 Post subject: Tired of rosacea
PostPosted: Thu May 09, 2013 11:49 pm 
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Loves Carrots (in the biblical sense)
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I was diagnosed with rosacea just before my 21st birthday in September since then I’ve seen 3 dermatologists, about 5 different doctors, saw an allergist and got tested for food allergies (there were none) as well as patch tested for skin allergies (there were quite a few) been given several different medications, creams, cleansers etc and got blood work done. Everyone I see seems to believe they will be able to get it under control for me but it’s just getting so much worse to the point where I can’t go outside during the day because the sun makes the flushing worse and much more painful. I don’t get acne or the pustules that are sometimes associated with rosacea just extreme, painful flushing on my face, chest, shoulders and upper back and dry patches on my face that come and go and are very itchy. I’m at a loss, I’ve cut out all the common triggers as well as the things I’m allergic to and nothing is getting better. It’s really destroying my self-esteem and my anxiety and ocd which were pretty under control have just gotten so much worse. I’m so frustrated and unhappy. I know there isn’t a cure I’d just like to see some improvement. Does anyone here have rosacea? Have you been able to get it under control?


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 5:47 am 
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Seagull of the PPK
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do a search, we've got a few other threads here and you might find something helpful you haven't tried. boring story even more boring, if you've taken the oral antibiotics there's not so much you can do (i've heard people say good things about accutane, my doc is nuts to put me on it but i think it's just too risky).
i find in the winter that oil cleansing makes my skin feel better but that's about all- appearance stays the same. At this point now I don't put anything on my face that isn't super simple/homemade/neutral. It's cut down on the pain with the flushes, if not the problems with appearance (i have the pustule type).

this year my skin was decent- during spring, summer, fall it's not bad. But winter is SUCH a disaster, especially fall-into-winter. I hate this time of year.

also, do a search: a few years ago i stumbled on an australian site, i think, that talked about research on the flushing effect and the takeaway was to avoid heat, not cold [opposite of what i had always thought]. i wish i could remember. there are also a few good rosacea forums online.

Do you avoid the food triggers? The doc is always bugging me on it but hot peppers, alcohol, tea- these are my major food groups and i will not give them up no way no how. Coffee I have more or less given up, because I really did see an immediate pain flush.

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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 10:13 am 
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Did they put you on antibiotics? I went through two different antibiotics and a ton of creams before it kicked into remission. I still have flare ups, I get the pustules and will flush. usually I flush from heat, or alcohol. But sometimes I manage to drink alcohol and not flush, so I don't know. My triggers seem to change from day to day. heat lamps always make me flush really bad.
I splash my face with cold water whenever it gets bad, and if I remember to, after I wash my face. It really helps.
There was one cream I was given, I forgot which one, but one of the side effects was skin irritation from sun exposure, so my doc said only put it on at night. Read all of the product information and make sure your not wearing anything like that when you go outside.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 12:22 pm 
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I haven't posted here in a few years and don't remember what my username was, but I read occasionally and thought I should reply since I have a similar problem.

If you have just extreme flushing without the bumps, then the antibiotics and topicals won't help you, or at least that is what the dermatology literature says. Have you gotten any workup to exclude other conditions that can cause flushing?

The non-facial flushing is not typically associated with rosacea, so I would be cautious about accepting a rosacea diagnosis, especially since there are no objective tests to distinguish rosacea from similar-looking problems caused by various other pathologies.

I have a similar problem, albeit with flushing that is probably less painful that yours. The main thing that has helped me is propranolol, which is a non-standard therapy for rosacea, but somewhat widely understood to inhibit flushing. You might also want to look into clonidine, which is also an unconventional therapy for rosacea, but the side effects weren't tolerable for me.

Here are some resources that might be of interest to you:

The flushing patient - differential diagnosis
Cleveland Clinic - Flushing
Neurogenic Rosacea: A Distinct Clinical Subtype Requiring a Modified Approach to Treatment
Pathophysiology and Treatment of Erythema in Rosacea
Rosacea and small intestinalbacterial overgrowth:prevalence and responseto rifaximin

You might also find some useful advice on rosacea forums, but there is a lot of crazy stuff as well.

Good luck and I hope you can find a doctor to help you investigate this properly if you haven't already.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 2:15 pm 
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Loves Carrots (in the biblical sense)
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Thank you everyone for your replies, it’s nice to know I’m not alone with this problem but I’m sorry that you all have to suffer through this too.

torque, Yes I have tried antibiotics. First one doxycycline seemed to make things worse so I gave up on the antibiotics for a while but my last derm wanted me to try minocycline so I'm on that now and not really seeing any improvement. I've heard accuntane can help but I agree that it's too risky, I've heard a lot of horror stories! I've never tried oil cleansing before but I've heard a lot about it, what oil do you recommend? For a while I was only using a mixture of shea butter and coconut oil on my face but after my last big flare up I was just like fork it and decided to use the moisturizer my doctor gave me which is by avene. And I've cut out all food triggers, it doesn't seem to have changed anything but I don't really want to chance it and make it worse than it already is. I've heard that acupuncture can be good for flushing because it can take away the heat, I'll have to look into more but I'm willing to try just about anything at this point.

Alaina, Yup first doxycycline and now I'm trying out minocycline, no improvement yet though. I never had a flare up after drinking alcohol but I cut it out just to be safe, heat is something that definitely causes me to flare up though but like you my triggers seem to change from day to day. It’s a real pain in the asparagus!

Jrl, Thanks for signing up just to leave me a message! That really means a lot to me and thank you for all the links as well, I’ll be looking through those tonight. I do feel like the antibiotics haven’t done much good for me so you’re probably right about that, I’ll give the current one I’m on a bit longer though just to make sure. I thought it was weird that I have some upper-body flushing as well but the doctors seem certain that it is rosacea, I was also tested for lupus but that’s about the only other non-rosacea conditions they’ve looked into. I was prescribed propranolol by my first derm but had no luck with it, it did nothing for me except make me tired. I will look into the clonidine though!

Thanks again everyone!


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 3:15 pm 
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It took me a few weeks to see improvement. I did an antibiotic and creams at the same time, then jsut the creams, then I was off for about a year, now I'm on and off different creams.
I took Doryx and my mom took tetraacylane (?) I was tetra something. All of the antibiotics can cause photosensitivity. That could be your problem and it would affect your whole body. Talk to your doctor and read the med info to see if your experiencing a side effect.
Roseacea can spread from your face to your ears, neck and chest, but usually that's pretty advanced or severe. I get some slight psorasis and my mom does too, along with some other skin conditions. The symptoms of them tend to overlap a lot and it can be hard to figure out which one it is, but the treatments are similar. Are the dry patches hard and white? That could be some sort of dermatitis / psorasis / eczema. My mom gets those and what helped her the best was bathing in dead sea salts. Didn't cure it and she still needs meds, but it helped. I'll probably be going down that road when I'm older.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 3:36 pm 
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I think it probably is eczema on top of rosacea, eczema does run in my family. I was also given a sample of finacea cream to wear under my moisturizer but at the moment I can’t tell if it’s making things worse or just staying the same (sigh) I also think you’re right about the photosensitivity and I’ll be making another appointment with my doctor soon to talk about getting my anxiety under control right now because I think that’s really contributing to this awful flare up. I’m just so frustrated and I feel like the doctors don’t really listen to me and take into account everything I’m feeling, I’m so lethargic and stressed and my hair texture has changed and is falling out but no one seems too concerned about that. My anxiety is so bad right now that I’ve started bringing my mom into my appointments because it’s hard for me to communicate everything that is going on and it’s just so damn frustrating because before the rosacea happened my anxiety was finally starting to get under control.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 3:48 pm 
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I always got the same feeling at the doctors. I felt like they see so many cases they just don't care.
I love the finacea cream, it makes my skin so nice. I used it with desonate, which is like a moisturizer, but prescription. The over the counter moisturizers that the doc's recommended, Cerave was one of them, made my skin absolutely terrible. Do you but on sunscreen when you go outside?
I'd be super concerned about the hair, but that's something to go to your general doc about and not the dermatologist.
Whatever you do relax and stop stressing yourself out!


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 3:56 pm 
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I was also recommended cerave but I didn’t buy it because I was skeptical, I’ll ask about the desonate though. I almost always wear sunscreen but right now my face is so reactive and sensitive it’s not tolerating anything so I just try and stay inside as much as possible. Is there a particular sunscreen you like though? I was given samples of elta md spf 46 and vanicream spf 60 but haven’t tried them yet, I’m waiting for my skin to calm a bit down first. I’m hoping the hair loss is just something to do with stress and isn’t anything more serious but I’ll be sure to talk about that more in depth with my doctor when I go see her about my anxiety.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:00 pm 
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Korisnory wrote:
I've never tried oil cleansing before but I've heard a lot about it, what oil do you recommend? For a while I was only using a mixture of shea butter and coconut oil on my face but after my last big flare up I was just like fork it and decided to use the moisturizer my doctor gave me which is by avene.

i use about 2/3 almond oil and 1/3 castor. it's a bit too much castor and next time i mix it will be about 25%. castor is really drying.
i used to moisturize with coconut but stopped, i miss it! maybe i will have to start again. miss the smell....

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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:03 pm 
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I think I may give that a go, thanks torque.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:10 pm 
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it's such a relief for my skin. also, i was really afraid of it when i started, because i thought the steam/hot water would make me flush more. it is a very different flush than a rosacea flush, and passed in a minute without the pain i was expecting. i think the massaging part makes it all a bit more tolerable, and a light exfoliation with a washcloth [even though everyone says no exfoliation for rosacea, ever] does me good.

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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:10 pm 
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I don't recommend the Cerave at all. I still have the bottles, they were barely used. I was full of pustules in by the middle of day 2.

I have a Neutrogenia sunscreen, which, unfortunately isn't vegan, but I want to use the bottle out before I buy one that is. It doesn't bother my skin and I hate wasting stuff, especially if it doesn't bother my skin, cause I have so many almost full bottles of stuff that does. I'm generally don't have any bad reactions to sunscreen as long as it isn't super thick. Moisturizer's are a completely different story, I have bad reactions to so many. I have no idea why! But sunscreen seems like I can put anything on that isn't heavy or greasy.

http://www.neutrogena.com/product/ultra ... y=ourPicks that's the neutogenia sunscreen. I generally don't wear sunscreen in the winter, but I'll probably start putting it on a week or two for the summer.
I can't wait to the bottles empty and I can buy one that's vegan and not full of chemicals. I guess I should start looking into that.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:26 pm 
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I've actually had an allergic reaction to that sunscreen before ): hopefully my skin will be able to tolerate one of the sunscreen samples I was given. My skin doesn't seem to like much of anything anymore, I even had a nasty reaction to evening primrose oil before which is supposed to be good for red reactive skin, just not mine I guess!


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:27 pm 
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you guys... i just realized that is what i got. also ocular rosacea. crepe :( i thought it was just "my skin acting up for quite some time" and "my eye itching a lot and feeling weird" :(

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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:34 pm 
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VeganinBerlin wrote:
you guys... i just realized that is what i got. also ocular rosacea. crepe :( i thought it was just "my skin acting up for quite some time" and "my eye itching a lot and feeling weird" :(


I'm so sorry *hugs* that's what I had first thought too, that my skin was just acting up. fork rosacea!

Have you seen a dermatologist about it yet? I found it very frustrating but I think the sooner you get help the better because it will make it easier to get under control.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:36 pm 
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I totally feel you on your skin not liking much of anything anymore. Mine seems the same way. One thing I do is alternate moisturizers, one one day and a different one the next. Same with body washes. Seems that no matter what is is if I use it too many days in a row I eventually have an allergic reaction to it, so I alternate it.

I thought I had ocular rosacea once. It turned out I had an allergic reaction to the eye crud build up my contacts. So like I'm allergic to dirt and my own eye liquids. I was on eye drops for months and then when it was gone I had to switch from bi-weekly to daily contacts. And even still if I have my contacts in for too long my eye starts to wig out.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:41 pm 
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Alternating skincare products is a good idea! I'm the same, if I use something for too long then I usually have a reaction to it.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:41 pm 
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ugh, my mom has ocular rosacea and once she hit about 50 she couldn't wear contacts anymore. i am not looking forward to that stage [my skin is juuuuuuust like hers].

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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:48 pm 
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I wonder if I'll eventually get ocular rosacea? I'd hate to not be able to wear contacts, I already can't wear glasses because they aggravate my rosacea.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:52 pm 
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Korisnory wrote:

Jrl, Thanks for signing up just to leave me a message! That really means a lot to me and thank you for all the links as well, I’ll be looking through those tonight. I do feel like the antibiotics haven’t done much good for me so you’re probably right about that, I’ll give the current one I’m on a bit longer though just to make sure. I thought it was weird that I have some upper-body flushing as well but the doctors seem certain that it is rosacea, I was also tested for lupus but that’s about the only other non-rosacea conditions they’ve looked into. I was prescribed propranolol by my first derm but had no luck with it, it did nothing for me except make me tired. I will look into the clonidine though!


For what's it worth, dry patches could also be seborrheic dermatitis, which is often found alongside rosacea

That's an interesting idea about the antibiotics causing flushing via photosensitivity. I hadn't heard of that.

You might also want to look into thyroid problems, since some of the symptoms you described like hair loss can be related to that.

Getting anxiety under control helped me a lot... It wasn't a cure but combined with the propranolol it helped me limit the flushing attacks to a point where I could handle work again.

For skin care, I like the Murad cleanser (not sure if it's vegan) and I moisturise a lot. I use the cleanser about twice a week and just wipe my face gently with a damp, very soft washcloth on other days. I don't let hot water or steam touch my face, since my facial skin gets damaged ridiculously easy. If I take a hot shower, I look like a mild burn victim for a few days. A mineral sunscreen also helps, but there isn't much sun where I live.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 4:59 pm 
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I think I need to go to get my eyes checked before I get my skin checked again. Uhh... i hope i dont get any more antibiotics prescriped ..

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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 5:06 pm 
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Korisnory wrote:
I wonder if I'll eventually get ocular rosacea? I'd hate to not be able to wear contacts, I already can't wear glasses because they aggravate my rosacea.


Yeah I have this problem with glasses too! So annoying. I can't find any that don't make my nose swollen and red.

About getting ocular rosacea, there is a paper about how commonly progression between subtypes occurs, but I haven't read it yet:

http://onlinelibrary.wiley.com/doi/10.1 ... 761.d01t01


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 10, 2013 5:35 pm 
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jrl wrote:
Korisnory wrote:
I wonder if I'll eventually get ocular rosacea? I'd hate to not be able to wear contacts, I already can't wear glasses because they aggravate my rosacea.


Yeah I have this problem with glasses too! So annoying. I can't find any that don't make my nose swollen and red.

About getting ocular rosacea, there is a paper about how commonly progression between subtypes occurs, but I haven't read it yet:

http://onlinelibrary.wiley.com/doi/10.1 ... 761.d01t01


Glad to know I'm not the only one!
Thanks again for all the resources, it's really appreciated.

I'm hoping getting my anxiety under control will greatly help with the flushing, I hate getting my hopes up but when I'm not hopeful I just feel depressed. Aside from my anxiety I know my skin barrier is probably severely damaged. One of my ocd rituals prior to my rosacea was to wash and exfoliate my skin, I used to do this about three times a day even though I have always had dry sensitive skin. It was something I just couldn't help, I was obsessed with perfect skin and now my skin is far from it.

I'm the same way when I get out of the shower! A hot shower used to be one of my favorite things in the world but now I turn the heat down, try and keep my face out of the water and only shower about three times a week. I think I may cut down on cleansing my face, my derm always tells me twice a day but it's not doing me any good.


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 Post subject: Re: Tired of rosacea
PostPosted: Sat May 11, 2013 12:19 am 
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If the thing on the skin is mild, do you really need to do something about it?

But as far as my eye is concerned, if it really is what I'm thinking it is, than it's very freaky.

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