Last Hope..Please Help

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.

Last Hope..Please Help

Postby Mike T on Thu Mar 18, 2010 8:01 am

Hi

I never write to these kind of things i only read but i am at the end of my rope now so i am hoping for a miracle.

I used to be a happy guy and very confident until i got what i later found out to be sebhoreic dermatitis. First in my head then my eyebrows.

I learnt to deal with it with antifungal shampoos which did a good job and thought things couldnt get any worse...i was wrong

After 4 months of sucesfull treatment my nizoral started giving me reactions around my eyebrows which got redder and redder. I did not know it was the chemicals in the shampoo so i swapped to tea tree oil shampoo same thing. i tried EVERY anti fungal shampoo they either worked for a bit then stoped working or gave me a reaction.

The situation is whenever my eyebrows flake i loose hair. My eyebrows have thinned heaps and i cant take it anymore. I feel helpless cos thers nothing i can try left. My dermatologist has ran out of ideas too. He got a pharmasist to make a special cream without any chemicals which the shampoos have in them. This didnt give me a reaction, worked for a month then stopped. It seems the fungi adapts to anything...(little bast#$%s)

Until recently..like 4 months i didnt know i had rosace aswell. I did ask me derm about it but he said thers no veins so i cant say yes. All my symptoms matched though. I got progressivley redder face in the heat and when angry. One day i went to the beach got burnt and it was like no burn i ever had. Bright red. It subsided but never to normal colour. Since then i have been getting bumps on my face.

Ok this is getting too long..

My situation is i dont care (or only slightly care about the rosacea and seb derm) what i DO care about is my hairloss in my eyebrows. I need to treat the fungi, but i cant because of the sensitive rosacea skin. Whenever the fungi has been treated, without having a reaction my hair gets stronger.

I am running out of ideas..my last hope is for a cream with Pyrithione zinc in aquoeus cream. Head and shoulders works well but again gives me a rash when i use it.

I am also thinking of getting a RED LASER to help my rosacea which may reduce sensitivty allowing me to use the antifungals..But you can use that near eyes can you?

Anyways i need help..please anyone that can help me through this i will be forever gratefull...

I am a proffesional structural engineer and my work life has suffered dramatically as a result of whats been happening. If i can get through this depression i will dedicate my money and life to finding a cure for this dreaded disease and helping as many people as i can.

Thankyou..especially if you read all of this..especially if you have your own problems.
Mike T
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Re: Last Hope..Please Help

Postby Mike T on Thu Mar 18, 2010 8:16 am

Sorry i forgot to add what i use..this may help[ some people

Steroids work well but the have bad side effects if used too long..i only use if i have reactions.

Elidel has wroked miracles for my redness..not the bumps..but it may give cancer in long term.. i take the chance. I have been applying this after i use any antifungal in my eyebrow to reduce the reaction. It is good if you put it on before you get the reaction or early signs of redness.

Noritate gets rid of bumps very good after first use..but increases redness. so i use in combination with elidel.

I have tried using suncream with dioxide stuff in it for sensitive skin.. they all make me shiny.. slighlty redder...and hassle to get off leaving gooey residue.

I use cetaphil moisturiser but not on my rosacea area of face. only on seb derm part without roscae..which isnt much. Elidel is prettymuch my moisturiser i use once a day.

I have not tried any antibiotics. i have tried all the anti fungals which ALL work perfect for my head but react with my eyebrows.

The rosacea and sev derm is managable like this..The hairloss is not.

Thankyou
Mike T
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Re: Last Hope..Please Help

Postby Aurelia on Thu Mar 18, 2010 2:19 pm

Hi WhyMe? and welcome to our board (wave)

Sorry that you are having such an awful time.Here's hoping we can help you. I don't have seb derm so know little about the subject, but have hunted out some posts that might be of some interest.

Auburn has mild seb derm along with her rosacea and has kindly written quite a bit about that difficult combination. Here is her blog post about treating seb derm with raw honey/coconut oil:
blog/Auburn/how_i_successfully_treated_my_seb_derm_b-6.html

Here is her blog post about using natural remedies such as raw honey to cleanse the skin:
blog/Auburn/gently_exfoliating_with_raw_honey_and_a_microfiber_cloth_b-27.html

There is a new prescription cream (steroid-free) sold as Sebclair in Europe and as Promiseb in the US:
http://rosacea-support.org/sebclair-for ... titis.html
http://rosacea-support.org/sebclair-lau ... cream.html

Auburn created this thread to report on her trial with a small sample of Promiseb:
viewtopic.php?f=8&t=1690

Note the reports from Dr Ron, who is happy with Promiseb so far, and Stingray326, who wrote: “So far my experience with Promiseb has been good. I did seem to get a red face after applying it but after a couple days the flakes went away and the redness faded after a few more days. My diagnosis was Seborrheic dermatitis so I really can't say it would help with anything else but it seems to be working for that.

Stingray326 also comments on Extina: “The nice thing about that is it works good for eyebrows and other areas where the flaking is under hair. I would use it when I noticed symptoms coming back.” “The Extina seems like if there are any open areas on the skin it might burn when you apply it.

You might also be interested in the thread ‘new with rosacea and seborrheic dermatitis’ where Min (Snim005) wrote about different treatments tried in a seven year history of rosacea and seb derm, including this: “Anyways, I myself have started using coconut oil which helps smoothen the skin and relieve dandruff from my eyebrows. I'm so upset cuz I also lose eyebrow hair a lot due to this nasty disease. I had permanent tatooing done. DEF a good thing but make sure you find the right person! Mine look very natural. At least I haVe somewhat of eyebrows. ALso, I did use afrin nasal spray in between my eyebrows and must say that it does indeed relieve the redness. Hope this helps someone out there and if anyone has any advice to offer me would be greatly appreciated.
viewtopic.php?f=3&t=1079

Here's a thread ‘Real cause of seborrhea discovered!’, where Breezes wrote about scalp diseases, shampoo and anti-fungals, then this: “I notice that my scalp swells, burns, stings and then breaks out with sores that have pus in them and crust . I lose hair every time.I am really getting thin. I have hair that is various lengths b/c of this. The doc calls this folliculitis …”.
viewtopic.php?f=5&t=363

Do you think there might be any element of folliculitis in your seb derm? (Apologies if that is a dim question.)

Lastly, several rosaceans with seb derm have posted about treatments they have used in our thread ‘Help with choosing treatments - not only for newbies’, but you would need to search through it:
viewtopic.php?f=37&t=669

Kind regards, and very best of luck,

Aurelia
Last edited by Aurelia on Sat Mar 20, 2010 7:23 am, edited 1 time in total.
Reason: Added a link to another of Auburn's blog posts
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Re: Last Hope..Please Help

Postby Mike T on Fri Mar 19, 2010 7:01 am

Id just like to say to everyone that tries to help somone here thank you so much.

Especially to the mods and constant helpers some of who have probably answered more questions of individual rosacea suffers (for free) than a practicing dermatoligist would in his whole career. Also many of the products you guys know about my dermatlogist does not. I really think that they should all meet and go over some of the new safer meds rather then just stick to what they know.

Anyways thanks Aurilia for that great post you have helped me to feel like i have a chance again.

I realise that any OTC antifungal will not work for me. I have rosacea in the inside of my eyebrows and when i use them i either get redness and/or blistering or more scaling due to inflamation (even though it may not be red).

I will wait till this tuesday and get the 1% zinc Pyrithione in aquous cream. This will have no chemicals, fragrances, parabins etc only the active ingrediant the carrier and anything else needed to make it stable. This should work for me without any reactions (hopefully) untill the M.Globosa adapt to it. This adaption can be as short as 1 month form experience. I am yet to determine wether after they have adapted to something abstaining from using that same product then using again after a while helps.

Anyways, i will during the 1 month using the ZP cream try and get another compounded with active ingrediant selenium sulfide 1%.
Also i will have raw honey + coconut oil ready to use as suggested in another post. (i am a bit sceptical of the oil part as experience has led me to believe any oil worsens seb derm..but will see..maybe only raw honey)
I had a aqeous cream with 1% salicic acid, 1% LCP and 1% sulfur which worked well with no irritation for about a month. Then stopped being effective. May try this in 3 months again.

In this way i will alternate treatments changing the active ingrediant monthly. After 3 months of not using a speific active ingrediant i believe you should be able to use it again. Therfore you need atleast 3 different active ingrediants to do this.The fungi will have no time to adapt.

This is my game plan. I hope it helps some.

Seb derm in my hair is the easiest to take care off. Never any irritation to any antfungal shampoos (no rosacea on head) and only need to use the anti-fungal shampoos once every 3 days which means active ingrediant doesnt need changing (although may still change every 3 months to be safe). The best anti fungals for head seb derm i believe are zinc pyrithione and Ketoconzole shampoos. Please dont use 1% ketocnzole only 2%. 1% shampoo has "quartanium-15" in it which gave me massive inflammation and pustules around my eye when i used it. It was the worst reaction i ever had 6 hours after i applied it. I later searched this ingrediant and found it is no good for anyone even without sensitive skin.

OK il wrap it up. Please let anyone with seb derm + rosacea know about this thread it may help them. I know i relied on my dermatologist too much for the past year who would just say apply anti-fungal shampoos (even though i said i was reacting to them), steroids or use elidel (elidel is great for redness-non steroid-some think may cause cancer if used heaps). He is not a bad derm but in the end no-one can be worried about yourself asmuch as yourself. Please continue to research. I found out i had rosacea on my own (wasnt too hard after the permanent redness came) i originally thought i just got embarrased heaps.

Ok thankyou Aurilia. all the best to everyone with these conditions and let me know if you have similar condition to me i have been through heaps with it and am happy to help relieve somone of the trial/error part of dealing with this stuff.
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Re: Last Hope..Please Help

Postby Aurelia on Fri Mar 19, 2010 2:06 pm

Hi WhyMe?,

WhyMe? wrote:... you have helped me to feel like i have a chance again.

Excellent! (yes) That's what we're here for: to help us figure out how to fix our own kind of problems while sharing with others on the same path the lessons of our own experience. For that reason, I was delighted to see you already diving in, helping and encouraging others. Well done!

WhyMe? wrote:... i will alternate treatments changing the active ingrediant monthly. After 3 months of not using a speific active ingrediant i believe you should be able to use it again. Therfore you need atleast 3 different active ingrediants to do this.The fungi will have no time to adapt.

A lot of rosaceans use the same technique against Demodex, cycling between different eradication methods. It's unfortunate when a good treatment stops working, so keeping them all "on active duty" can be an excellent idea, provided there is no medical reason against it.

WhyMe? wrote:Please let anyone with seb derm + rosacea know about this thread it may help them.

We will, but readers will also find it by running a site search for seb derm.

Kind regards,

Aurelia
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Re: Last Hope..Please Help

Postby Auburn on Sat Mar 20, 2010 2:40 am

Hello WhyMe?, (wave)

Both raw honey and virgin coconut oil are excellent skin conditioners. Both have antifungal, antiinflammatory, antibacterial and antiviral properties.

The raw honey mask does its magic while sitting on the skin for three hours. The virgin coconut oil absorbs quickly, treating the skin from below, so to speak. Virgin coconut oil is not like any other oil you may have tried, btw.

I have successfully treated my seb derm with raw honey masks and virgin coconut oil. My seb derm has been quiescent for almost a year now. Went through a very dry winter (dry air aggravates the condition) with no flares. I participate in another forum where several members are now treating their seb derm with this treatment with very good results.

If you would like to give it a try, all you need to do is:

Mix raw honey with 10% of lukewarm water and apply this to your face, ears and scalp.

Leave the honey mask on for three hours, rinse, pat dry and moisturize with a very small amount of virgin coconut oil.

You'll do this every-other-day for four weeks. If the treatment works for you, you'll see results within a week. It may take four weeks or a bit longer for the flakes and seb derm-related inflammation and redness to subside, particularly if you've used steroid creams on your face.

The days between treatments, just cleanse and moisturize with the oil twice daily.

Two important things about the oil:

- One tablespoon is enough for the whole body so, for your face, please use a pea-sized amount (small pea). In other words, be very stingy with this oil. Don't apply it as you would baby oil or a lotion. Just put a tiny amount of oil in your palm, rub it between your hands and apply to face. It will feel like you are not applying enough but you are. The oil should absorb immediately. If your face looks shiny after 10 minutes, you've applied too much.

- The oil melts at 76 F so keep it in the fridge because it's easier to measure when in solid form.

Don't let hot water touch your face. In the shower, use a hand held shower head to rinse your head.

For more info (where to get raw honey, good brands of virgin coconut oil, more tips, etc.) follow this link: blog/Auburn/how_i_successfully_treated_my_seb_derm_b-6.html

All the best. (wave)
Rosacea symptoms: occasional flushing, diffuse pinkness.
Treated seb derm successfully w/ raw honey and virgin coconut oil. Quit eating sugar in Apr 09.
Suplements: Arctic-D cod liver oil + wild Alaskan salmon oil.
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Re: Last Hope..Please Help

Postby Mike T on Sun Mar 21, 2010 6:07 am

Thanks

that raw honey sounds good (Cleanser + Moisturiser + Antifungal + Antibacterial) with a little, little bit of coconut oil. (i say little because i usually put too much oil which i find clogs pores and occasionally led to redness)

Anyway i have come to find, with a proper cleansing and moisturising routine (2x daily) that my seb derm + rosacea is not really that bad.

My bumps are kept to a minimum with noritate (now i onyl need use once evey 3 days..before i sleep as makes me a bit red).

I cleanse with cetaphil cleanser for sensitive skin (very good). After this you need to moisturise. I like to moisturise while my face is still moist (a little wet) as its easier to spread and you use less. I use cetaphil moisturiser with alovera 97.5%. I like cetaphil but i find the moisturiser just a tad heavy and shiny (only a little bit). I have bought netraugena moisturiser for sensitive skin just to give a go. WIll let you know if any good.

Since following my cleansing routine i have found that the seb derm in eyebrows is less. My prescription of 1% sulfur 1% LPC 1% salicic acid is working well now. I know exactly how much to use and how long to leave on (very little on finger tip lathered into eyebrow left for no more than 1 hr) to prevent redness.

I am getting Zinc Pyrithione cream in aquoes cream aswell soon. I stress if you have both SEB DERM + ROSACEA normal antifungal shampoos may be too harsh..they were for me..ALL OF THEM. I kept swithching through all of them thinking one might not aggravate my rosacea and they ALL made my face so red, blistered, blotched and increased hairloss. This was the worst year of my life. You need specially compounded creams without all the fragrances, dies, etc.

Also i tried 4% tea tree oil in alover gel once (i mixed this myself- teat tree oil antifungal - alovera antiinflammatory) worked well untill i decided (stupidly) to increase concentration of tea tree oil when its effectivness dropped. I had a reaction. This drop in effectivness i now believe is because M.Globosa (seb derm) adapts to treatments. See my earlier post on how to change treatments regularily. You may find your seb derm is not as quick to adapt as mine..dunno.

Lastly if you try something new (after it passes patch test) and feel real itchy and feel hot and start to feel bumps comming you are most likley having a reaction (too much product used or left on too long). I apply Elidel as quick as i can this usually hold back the redness and all is well (research elidel for side effects if used alot- i believe safer than steroids for occasional use). If i am too late and the reaction has progressed i apply liberally a bit of Desowan (mild steroid) or if its real bad like allergic reaction i.e if you forgot to do pacth test, i apply VERY liberally Advantan lotion (Strong steroid). Both these steroids clear my reaction within 8hrs especially the Advantan. I would not use either only if i had a reaction to a product which used to be around 3x a month when i was experimenting with OTC anti-fungals ..I never made the same mistake twice (i suggest writing down all reactions in a book).. now i know better and hopefully dont have to ever use them again because steroids should always be A LAST RESORT i believe and NEVER be used regularily (i.e for more than 1-2 months daily per year) especially the strong ones... UNLESS ADVISED TO BY YOUR DOCTOR AND HE HAS GIVEN YOU A GOOD REASON WITH NO SAFER ALTERNATIVES.

Also dont get burnt or have too much sun exposure with any steroid or elidel. I did this once got bad lumps, burnt real quick (in like 30 mins) and may increase cancer risk.


Peace Out
All advise i give is based on MY personal experience. Things that work for me may not work for you. If you are worried (especially about drug interactions) see a proffesional dermatologist.
Mike T
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Re: Last Hope..Please Help

Postby Auburn on Sun Mar 21, 2010 3:06 pm

WhyMe? wrote:
Anyway i have come to find, with a proper cleansing and moisturising routine (2x daily) that my seb derm + rosacea is not really that bad.


Oh, never mind then. I was under the impression that you had come here looking for advice on how to treat your seb derm. My mistake.

Best of luck.
Rosacea symptoms: occasional flushing, diffuse pinkness.
Treated seb derm successfully w/ raw honey and virgin coconut oil. Quit eating sugar in Apr 09.
Suplements: Arctic-D cod liver oil + wild Alaskan salmon oil.
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Re: Last Hope..Please Help

Postby Aurelia on Sun Mar 21, 2010 4:09 pm

Hi Auburn,

Many thanks for your helpful advice in this thread.

WhyMe? was indeed looking for help with his seb derm, but mainly for his eyebrows. He has struggled badly with the combination of seb derm and rosacea, but the hair loss was really beating him down. Hence: "i am at the end of my rope now so i am hoping for a miracle." "I used to be a happy guy and very confident until i got what i later found out to be sebhoreic dermatitis." "My situation is i dont care (or only slightly care about the rosacea and seb derm) what i DO care about is my hairloss in my eyebrows. I need to treat the fungi, but i cant because of the sensitive rosacea skin.." "The rosacea and sev derm is managable like this..The hairloss is not."

Now, after reading advice on the board, WhyMe? has put together a new “game plan” he is hoping should work for him, but of course only time will tell.

That's how it is with us all, I suspect. Worry, reaching out, feeling stronger and even optimistic, then we try a bit harder and see how we get on. Such is life! (hug2)

Kind regards,

Aurelia
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Re: Last Hope..Please Help

Postby Mike T on Mon Mar 22, 2010 6:37 am

Yes that is correct

before i joined this forum i was at the lowest point because i was trying to deal with my two conditions as if they existed seperatley. I was told to use OTC antifungals for my seb derm (my derm didnt know i had rosacea) and i went through them all just having a red face for about a year.

Since i came here i read hundreds of posts and found many people were cleansing and moisturising as part of there daily routine..which i did not...i actually avoided washing my face as it made it dry and i felt like it stripped the oils and made my seb derm stand out more.

After my first cleanse i noticed my seb derm (and rosacea) reduced dramatically however not completely. This reduction allowed me to treat the remaining seb derm with the sensitive skin antifungal i have containing sulfur. I know this antifungal with sulfur will stop working for me in the near future due to the adaptability of my seb derm so i have lined up more treatments.

Auburns suggestion of Raw Honey i believe will work very well for me as it is natural with no harmful additives so shoudnt aggravate my rosacea. I have searched for this raw honey but not luck yet...i like to buy most of my products from shops not online because i hate waiting.

I would still appreciate any other suggestions for natural remedies for seb derm which are known not to aggravate rosacea so that i may throw them onto the back burner. i have around 4 now but i never know if my body might suddenly react to one or it may stop being effective or if the new suggestion is more effective.

It may seem like i am being greedy not sticking to one thing which works, but since i am ahead now i want to keep it that way and never go back..even if that means having a plan E.

I also want to help people who may be suffering like i did due to lack of knowledge...i wish i read a post like this when i thought i only had seb derm to teach me why i was having all these reactions. i would have linked my constant flushing to rosacea pretty quick and then to my reactions.

Thankyou again
Mike T
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