Does anyone have to change their lifestyle because of rosacea. I have a severe case and it has cost me my friends and hobbies.

Dear Mauve,

I'm so sorry to hear that Rosacea has cost you your friends and hobbies. I myself have had to drastically change my lifestyle, but can't say that I've lost those dear to me or an enjoyable life because of the disorder.

I myself am middle aged and dealing with the worst of the disorder the past few years. It affects my skin, my eyes, and my autonomic nervous system. Looking back on photos from when I was a teen I now see that I showed the pre-rosacea signs of flushing. That stereo typical Princess Diana, pink cheeked look that everyone took for a healthy/rosy complexion. I inherited it from my father. Who has some rhinophyma because of it. My middle nephew also shows signs of pre-rosacea. We three are the fairer skinned members of the family.

My rosacea is such that I avoid sun all together. (Exposure on my face, neck and chest stings.) Living in California and having been a former sun-bunny it's not an easy thing. I realize however that my years as a sun worshiper, and a few bad sunburns as a kid contributed to the disorder. I wear zinc based SPF 50 or higher year round, sun glasses, long sleeves and hats in the summer (just like a skin cancer sufferer would), and take vitamin D to compensate for my lack of sun.

I use gentle skin care products and have recently found the Clarisonic with the Delicate brush head to be very beneficial in keeping flare-ups and inflammation at bay. I also have started taking the Rosadyn supplement along with my usual daily vitamin regimen and it seems to be showing improvements with my flushing, breakouts, and regulating my body temperature. Oral and topical antihistamines also have proven helpful with flareups. I have found mineral makeup to be beneficial in keeping my skin calmer as well as covering up the redness. I keep antibacterial wipes in my car and purse to help quickly combat an itchy flareup of breakouts. I also daily use Genteal eyedrops at home and at work. Working at a computer makes my sensitive and dry/occasionally gritty feeling eyes worse, but such is life. I use Moderate formula during the day, occasionally accompanied by an allergy eyedrop and Severe formula at night.

My body is no longer able to regulate temperature as is once did. Exposure to extreme heat or cold can set me off into a very bad flush and sweating. With such episodes my skin immediately pays the price with an extremely itchy outbreak of papules and pimples. These outbreaks can range anywhere from my scalp to my clevage... not just the face and neck. The dog days of summer are the worst for me as one goes from sweltering heat outdoors to ice-cold air-conditioning. I have a devil of a time getting my body to regulate. I carry a hand held or battery operated fan in my purse at all times during the Summer. I also can no longer use my lovely down comforter on my bed in the Winter as I have a tendency more often than not to get overheated with it while I sleep. And who wants to wake up with new breakout in the morning!?! Fall and Spring are the best times of year for me when temperatures are mild and cool. I usually wear layers throughout the year so I can try to keep my body temperature even and comfortable.

As for lifestyle I try to avoid overly strenuous physical exertion, exposure to extreme heat and cold or quick changes in temperature. Try to keep my stress under control and get enough sleep as both will affect my skin. No alcohol whatsoever... not easy living in wine country, and I adore champagne. The holiday season without it is a tough one for me, but the price I pay is a steep, so it's a choice I make. No spicy food... just the occasional mild spicy now and then. No cheese, especially aged. No yogurt. No bananas. No organ meats... liverwurst will break me out in a heartbeat... and I love the stuff. No beef or pork... very, very rarely. No skin on poultry. Very little citrus or anything acidic. I have to be mindful of my overall consumption from oranges to tomato sauce to pickles or salad dressing and not over indulge. Limiting processed and packaged foods. No hot coffee, hot tea, or hot soup. Very little chocolate. As an admitted chocoholic I will not give it up entirely, but I know the combination of the sugar and caffeine will break me out. So being the holidays I cannot say no to Sees Candies, but only have a couple pieces. Very little sugar and watching not to over indulge in white flour type carbohydrates like pasta and bread. No juices, sodas, or sugary drinks with real or artificial sweeteners. On rare occasion I'll have some juice. Yesterday being Christmas I had one glass of Martinelli's Sparkling Apple Cider cut down by half with water. Otherwise throughout the year it's filtered water all day. I must say, the drastic cut in sugar has enabled me to drop a few pounds without even trying and it does help my body temperature stay better regulated. All in all, you start eating more and more as if you were a diabetic or have high blood pressure. Not bad in that it's more healthy, but for a foodie who knows that fat, sugar and spices are what makes dishes fabulous it's not easy.

My friends and family have learned not to pester me, although they do joke from time to time about me spontaneously combusting. They've all seen me turn beet red in the past and know there is a price to pay for poor choices on my part. So when we went to an airshow this summer it was with SPF #65, sunglasses, a widebrim straw hat, long sleeves, bottled water, and a fan. I had a fabulous time... and was the only one that came home that day without a sunburn! When toasts were made at the company Christmas party last week nobody questioned my glass of water. I know come Summer that I can only do yard work or wash the car around dusk or dawn to prevent myself from overheating. When it's icy out I know my sunscreen and a scarf are necessary to physically protect my face. I still love a fire in the fireplace, I just can't cozy up to it anymore... or stand over the stove or oven too long cooking holiday meals. As a former esthetician I know that skin care and sun protection are an important part to not only keeping breakouts at bay, but from developing disfiguring phyma. I also have on my 2010 "to do" list laser appointments to improve my existing telangiectasia on my face, neck and chest... also see if I can't knock my disorder into remission for a little while.

Such is life. I consider myself fortunate in that this is a disorder that does not cripple me or leave me in chronic pain. So, with a little work and educating myself as much as possible, I am making the most of things.

Nadiko,

Thank you for your excellent post. Very informative and many rosacea sufferers can relate. That is often therapeutic in itself.

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__________________
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Best,
Geoffrey

Dr. Geoffrey Nase
Ph.D: Neuro-Vascular Physiologist

Email: drnase1000@hotmail.com
Bibliography: http://drnase.com

All posts are for informational purposes only. Please visit our Home Page to view our Medical Disclaimer.

Thanks Dr. Nase... just telling it like it is.
Yes, knowing you're not alone in the daily challenges and lifestyle choices made because of Rosacea is therapeutic in and of itself. None of us should have to feel alone in our struggles. Knowing that someone else understands exactly what you're going through makes things a little easier. I hope "Mauve" with some adjusting is able to keep a modified version of the lifestyle she loves as well as those she cares for. Goodness knows I would love to go back to the days of going out in the snow or on a beach without a second thought to protecting my skin, or body temperature. I'd love to once again eat whatever my little heart desired... especially at this time of year...yum!!! Nothing is stopping me, I certainly can go right ahead. However I'm too vain about appearance, and realize I'm also judged by society on that appearance, and won't allow myself to become the woman with the bluish-red swollen face because I've thrown all care out the window. Whatever choices need to be made in order to maintain calm with my disorder... I'll make them. Hopefully through the sharing with other fellow Rosaceans I'll find a few more tricks to the trade in keeping my health and complexion in check. Hopefully all of us at this forum will.
Here's wishing everyone a happy, healthy and blush-free 2010!

dear nadiko,
thankyou for your testimony. May I ask what mineral makeup you use and what sunscreen. I have yet to find any that my skin can tolerate. I had an IPL treatment and hope this and the rosadyn will keep the disease at bay. my skin is very reactive to almost all products, even water hurts!! Thanks, ladygolf

Dear LadyGolf,

What is your handicap? Dr. Nase recommended a new product by Dr. Perricone. I'm sure he'lll reply.

dear ncpharmacist,
My handicap is a 25. I love to golf, doesn't mean I'm good!!!! Do you golf and if so what is your handicap? In response to your demodex mites strip test. Been there done that. I used a cream called zz cream for awhile, I broke out in lots of the bumps for the first 3 weeks. YIKES!!!! Cream made my face feel good while on, its zinc based, but very very dry. Used as directed for 90 days. Don't get the itchy bumps as bad now but they still come once in awhile, always at nite. I know Dr Nase doesn't believe they cause rosacea and I do not either, but it did cut down a lot on the itchy bumps using the cream. So I probably killed off a bunch ,BUT the underlying disorder of the rosacea,redness, burning, stinging, basically a sore face when triggered are still there and worsening, hence the IPL treatments. I've had one and will keep people informed of how they go if anyone cares. I have also started taking rosadyn,I think I said that in another post.

Ladygolf,

It sounds like Demodex may play a minor role in your rosacea symptoms, especially if zz cream brought relief and bumps to the surface.

I would highly recommend one month of oral ivermectin. Great treatment and it would wipe out all three stages of demodex.... very few side effects as it targets only invertebrate anatomy and cells.

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__________________
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Best,
Geoffrey

Dr. Geoffrey Nase
Ph.D: Neuro-Vascular Physiologist

Email: drnase1000@hotmail.com
Bibliography: http://drnase.com

All posts are for informational purposes only. Please visit our Home Page to view our Medical Disclaimer.

Does anyone know what season is suppose to be the worse for rosacea?

Is it winter with the cold or summer with the heat?

Katie

For anyone who has been tested for Demodex with biopsies or tape tests OR those who suspect that Demodex may play a role in their symptoms, I can highly recommend Susan Merestein, a compoundng pharmacist with Murray Avenue Apothecary. I have collaborated with her for several years now and she currently sells 100 capsules of ivermectin (12.5 mgs) for an exceptional price. I have collaborated with her in the past for topical ketamine, topical clonidine (2%) and other novel treatments for severe neurovascular rosacea.

Over the past 5 years approximately 25% of rosacea sufferers who have tried a 3 month treatment regimen have noted significant improvement.... no side effects. It also helps rule out there involvement or secondary immune involvement. All you need to do is email or call her and request a form for your physician to sign.

Ivermectin Capsules
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__________________
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Best,
Geoffrey

Dr. Geoffrey Nase
Ph.D: Neuro-Vascular Physiologist

Email: drnase1000@hotmail.com
Bibliography: http://drnase.com

All posts are for informational purposes only. Please visit our Home Page to view our Medical Disclaimer.