New to the site, diagnosed a while ago.. need opinions

Have you just been diagnosed with rosacea ? This is the forum for you. You can walk out of the doctor's office with a head full of questions and feeling overwhelmed. Well settle in here and see that you head in the right direction to get some good relief from your symptoms.

New to the site, diagnosed a while ago.. need opinions

Postby fedup » Fri Jun 19, 2009 2:21 am

This will probably be the longest introduction I've written anywhere... Dates and prescription (number of days) is probably not 100% accurate

To start off, I'm a 28 year old male, I've had some odd skin issues since I was 13 (maybe younger, hard to remember at this point). No family history of rosacea, no one else in my family effected at all for that matter. Roughly 15 years ago (when I was around 13), one day in gym class doing some strenuous activities, scalp started itching like crazy. For a while I noticed whenever I got hot, nervous, or embarassed my head would itch, and my back itched horribly (millions of pin pricks). This calmed down and very rarely happened, never really worried about it (back still occasionally gets that feeling). About 10-11 years ago (roughly) I noticed I had a few pimples on my scalp (in the hair), nothing major, came and went, so I never worried about it. By age 21-22 these pimples had been occurring more frequently, found myself always picking at my head, spent countless hours searching for answers online, after coming up empty handed I decided to go see a dermatologist.

I went to this dermatologist maybe 2-3 times a year over about a 4 year period, every appointment he seemed to have absolutely no idea what was going on, or what he had prescribed/said the last time, he took a look at my scalp, says "its folliculitus" (the way he said it, every time, was as if it was a breakthrough and he figured out some giant mystery, even though he said the same thing last time). Over those years he wrote me several different prescriptions. To start, clindamycin phosphate topical solution and loprox shampoo, which did little. I continued my research online, next appointment I asked him to check for some type of bacterial/fungal/yeast infection. He poked at one of these "pimples" with a swab, sent it off, and sent me home with a prescription for Ceftin 500mg 2x a day for 2 weeks (insanely strong antibiotic, I know now..). I started the Ceftin, took one pill in the afternoon of the first day, woke up the next day and everything was completely clear, I was amazed. Finished off the Ceftin, despite the fact that it seriously, seriously, screwed up my stomach to the point of where I just didnt want to eat.. everything was fine for about 4-5 months. Then, one day I noticed a pimple, and after about a week my head was worse than ever.

Went back to the dermatologist, told him the ceftin cleared it up for a while, but it came back. He asked if I had worn any old hats, if while my scalp was clear I had contacted anything from when I had the problem, told him I wasnt sure, but I suppose its possible. Told him how ceftin messed up my stomach, he told me to take some probiotics, and prescribed 250mg ceftin 2x a day for 60 days. Once again I started this medicine, almost immediately everything cleared up, my stomach was a wreck again, but finished it off... now about 3 months later, the problem returned. Went back again, told him I finished off the antibiotic and again it came back, he wrote me a prescription for some "topical solution" that "should dry things up". Didnt realize until I picked up the prescription, that once again it was simply clindamycin phosphate, and jsut like before, had no effect. Called the doctor up, told him the only thing that worked was the ceftin, he said to refill it. Again took ceftin for 60 days, stomach upset like crazy, still hadnt normalized from the last ceftin prescription. This time it took about a week for everythign to clear up, after completion of the antibiotic, the pimples came back after about 1 month this time.

Still didnt see any red flags here, went in for another appointment, again this dermatologist just seemed to not be all there.. was starting to realize that. He took another swab of my head, I came back a week later, and he told me there was a bacterial infection. Again, prescribed ceftin, this time, took about 2 weeks on the antibiotic for my scalp to clear up, and at about day 55, i noticed I had a couple pimples on my head.. Now this was when the news had just started talking about MRSA, and misuse of antibiotics leading to resistant bacteria.. the red flag on this dermatologist finally went up.

Made an appointment with a new dermatologist (roughly 2 years ago), after explaining the antibiotic fiasco, he told me my old doctor probably shouldnt be practicing medicine. He took about 10 seconds to diagnose me, looked at my scalp, and simply said "you have inflammatory rosacea." I was just happy to hear anything other than the bulls**t generic worthless "folliculitis" diagnosis the original doctor was trying to tell me. New doctor prescribed me Luxiq Foam, Oracea, and Metrogel. Told me to figure out what combination worked best. The metrogel was out, as it doesnt do too well as a hair product, ended up using the Luxiq foam and Oracea every day and had things under control for quite a while. Around November 2008 I started getting pimples again on my scalp even while using the medications daily. Made an appointment with the doctor for 3 months out because they were booked solid. Stopped using the oracea and luxiq for over a month until my scalp got to the point where I couldnt take it anymore, went and got my last refill for Luxiq, and used it over the next month (no oracea).

About a week after running out of the luxiq, and a week before my appointment, a really intense itch developed behind by ears, where the ear and head meet, over the next day this turned into what looked like a little rash on my neck. Then my face started to feel sore, I initially attributed that to the use of a harsh generic brand face cleaner, a month earlier after using the cleanser heavily, I got the same sore feeling, went away after i stopped using it. I had just used it again the day before the facial soreness, figured its just too harsh for me. Over the next 24 hours this turned into what looked like a pretty bad acne breakout (I've never really had acne problems), lots of very sore red bumps. Managed to survive the next 2 days till my derm appointment.

Went in for my appointment, as soon as the doctor opened the door he said it was a rosacea flare up.. leaving me wondering what the hell, as I've only ever had problems on my scalp. After telling him how the prescriptions he gave me were not working well anymore, he proceeded to tell me that I shouldnt have been using the Luxiq every day, that the skin will build up a resistance to it. Again, his prescription specifically said to use the Foam every single day, and he told me this in person as well. Red flag at half staff... Told me to lay off the foam for a while, wrote me a prescription for what he simply called a "lotion" and Doryx (doxycycline antibiotic). Upon picking up the prescriptions I found the "lotion" was once again clindamycin phosphate, this time in lotion form. Started the antibiotics and lotion immediately, as well as some cetaphil facial moisturizer. Both lotion and moisturizer stung the living hell out of my face, continued for about a week, very slow improvements. The clindamycin seemed to be causing more damage than it helped, so I stopped taking that, and decided to find a moisturizer that wouldnt irritate my skin as much. Ended up finding some Mary Kay Satin Hands moisturizer (thick/heavy stuff) laying around, tried it, and to my surprise things felt much better pretty quickly, finished off the Doryx (scalp was clear while i was using it as well).. things were fine, until about last week, again, my neck started itching (no real visible spots this time), and face started mildly breaking out. This of course got me extremely stressed out and I noticed my chest was a little itchy with a few small red bumps

Im at the point where I'm really starting to question the competence of these doctors.. looking for some opinions.. is this just the beginning of what is going to be a horrible case of rosacea as i age? Some type of skin infection? Possible food allergy/celiac's? All these damn antibiotics and chemicals just screw something up?

I should also note I am probably one of the most stressed out people on earth, do some intense exercise several times a week, I eat fairly healthy for the most part, rarely drink, and also get very little sleep during the week

The more I read the more indecisive I am, some sites say rosacea of the scalp is rare, some sites say rosacea doesnt manifest itself there... I need to figure out some new things to try, and I need to find a specialist (preferably in the dc area) that actually knows what is going on.

Any input is appreciated
fedup
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Re: New to the site, diagnosed a while ago.. need opinions

Postby Lisamouries » Fri Jun 19, 2009 12:16 pm

Welcome fedup.
So sorry to hear about what you have gone though. I understand your frustration at finding the right doctor as a lot of us have to go through this 'procedure'. It can take time though even with the right doctor to find a routine and medications that will work. I think you should also bear in mind that a lot of times Rosacea can be diagnosed in conjunction with other ailments like Seb Derm. Seb Derm is something that also can occur in the scalp and is itchy and flakes so I wouldn't rule anything out.
I'd say the best thing is to look through the different sections on this board.

Here is something on itchy scalps
viewtopic.php?f=31&t=1107
And a few links on seb derm
viewtopic.php?f=31&t=130
viewtopic.php?f=31&t=452

You can also do your own searches on this site by putting a key word in the little search box on the top right.

Hope that helps and that someone will come back about a potential Dr in your area. But be aware that some of us do travel long distances to go to a Dr they are particularly happy with.

All the best.
Lisa M.
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Re: New to the site, diagnosed a while ago.. need opinions

Postby SouthernMoss » Sat Jun 20, 2009 3:46 pm

Welcome, fedup. Rosacea is definitely frustrating to deal with. Rosacea skin is notoriously slow to respond to treatment, and it can often take a month or more to determine whether a specific treatment is working or not.

I'm not from the DC area, so I can't recommend a dermatologist, but I encourage you to keep searching until you find one with whom you feel comfortable.

You mention that stress is a big part of your life. Stress is definitely a triggering factor for most rosaceans, so try to find ways to minimize stress. Some find that meditation or yoga helps.

Certain foods can often trigger a rosacea flare, as well as sun exposure, hot or cold environments, physical exertion, and many others. Here are some lists of the most common rosacea triggers: http://www.rosacea.org/patients/materia ... sindex.php . Keep in mind that not all the triggers will apply to you, and you will need to determine, through trial and error, which ones are your personal triggers.

The fact that the Mary Kay cream helped so much indicates that you probably haven't been getting enough moisture. Rosacea skin does not hold moisture as well as undamaged skin, and when rosacea skin is not well hydrated, it is much more reactive. So you need to develop a daily cleansing and moisturizing routine, using gentle products designed for sensitive skin. You may need to reevaluate any shampoos and styling products that you use, as well.

You might want to browse through our natural remedies and supplements section too (viewforum.php?f=4) . Some of our members report success using supplements such as Omega 3 fish oil.
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Re: New to the site, diagnosed a while ago.. need opinions

Postby Auburn » Mon Jun 22, 2009 1:25 am

Hello Fedup,

Hopefully, you'll find a decent rosacea specialist in your area soon (I'm looking for one, too). In the meantime, would you mind giving a natural treatment a try?

What you have could be seborrheic dermatitis (from Mayo Clinic: "Seborrheic dermatitis appears on the parts of the body with the highest concentration of sebaceous glands, which produce sebum, an oily substance that lubricates and softens the skin. Affected individuals may notice red, greasy scaling or flaking areas on the scalp, the sides of their nose, eyelids, the eyebrows, the ears or over the breastbone.").

I had to deal with a seb derm episode recently. I tried a number of traditional remedies but nothing really worked. One day, after dozens of hours of online research, I landed on this page http://www.ncbi.nlm.nih.gov/pubmed/11485891 and I thought, well, I've got nothing to lose so I gave it a try. I'm glad I did. (BTW, the patients in the study presented "scaling macules, papules and dry white plaques with crust and fissures.")

For this treatment you will need to get raw (crude) honey and that's the only tricky part (regular honey will not work at all for this, unfortunately). Don't buy it at a store/supermarket. See if you can find a beekeeper in your area, that's your best source. Raw honey is totally unprocessed and has never been heated (store bought liquid honey has been heated and does not contain enzymes, propolis, nutrients, etc.). Raw honey crystallizes rather quickly and it's seldom sold in liquid form (unless you happen to buy it shortly after it's been collected).

A quick google search turned out this: http://www.google.com/search?client=opera&rls=en&q=raw+honey+maryland&sourceid=opera&ie=utf-8&oe=utf-8.

I hope this helps. (wave)

Auburn
Last edited by Auburn on Tue Sep 01, 2009 4:43 pm, edited 1 time in total.

Treated seb derm successfully with raw honey and virgin coconut oil and have been symptom-free since June '09.
Follow this --->link<--- for details.
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Re: New to the site, diagnosed a while ago.. need opinions

Postby Lisamouries » Mon Jun 22, 2009 9:15 am

Welcome Auburn.
What an interesting treatment using Raw Honey. I get bouts of Seb Derm once in a while too. I'll have to talk to the beekeepers at the summer country shows they have here in London and see what they say. It's a shame I didn't know this before, I'd had asked my Mum as she kept bees till 2-3 years ago. Thanks for that info.
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Re: New to the site, diagnosed a while ago.. need opinions

Postby Auburn » Tue Jun 23, 2009 3:29 am

Hi Lisa!

She might still have a jar or two (honey keeps indefinitely).

Do you know what triggers your seb derm? How often do you get it?

In my early teens I had a few bad dandruff episodes (giant white flakes all over my entire scalp) but I don't remember to have had seb derm ever until now. Actually, I didn't even know what it was, I thought it was a rosacea flare.

Back in March, I started drinking yerba mate tea after dinner (instead of regular tea) and a few weeks later my face and scalp turned tomato red and oh that unbearable itch :cry:. I stopped drinking the yerba immediately though I couldn't find any info online that would link it to skin reactions. Maybe I'm allergic to it or maybe it wasn't the yerba at all, who knows.

Auburn (wave)

Treated seb derm successfully with raw honey and virgin coconut oil and have been symptom-free since June '09.
Follow this --->link<--- for details.
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Re: New to the site, diagnosed a while ago.. need opinions

Postby Lisamouries » Tue Jun 23, 2009 8:31 am

My seb derm is very mild luckily. I just notice maybe twice a year that my scalp gets itchier and itchier so that's when I use head & shoulders or Neutrogena or Nizoral and that seems to be sufficient to keep it under control.
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