Rosacea--now I've Got It

[Judyin Philly]

Judy--Lynne pmed with music, so I'm good to go on that now.

THAT'S GREAT JEN...I'LL PM YOU THE INFO.

But, send me her #. I told her I'll have to visit her somtime--only 2 hrs away. Too bad we can't all lunch together! Lunching Ladies OH THERE IS NOTHING I'D LOVE TO DO MORE..WELL MAYBE A FEW THINGS BUT THAT WOULD BE AT THE TOP OF THELIST.

JUDY

[mamaw]

H JenVan

I sent you a pm so I hope you got it!!!!!!!I forgot to tell you that a good make-up is Bobbi Brown & some use Paula's choice products..

Also if you get hot at night while you sleep there is a pillow insert called the chillow tha tis good to help keep you cool........

Let me know if you didn't get the pm

mamaw

[kabowman]

I have had rosacea for about 6-7 years on my face - mild, not really bad enough to worry about, just cover it up which I know is wrong. The only time I don't have it is in July and August. I do have some veining but it really isn't too bad and a nice tan will cover that.

However, I went in to my allergist yesterday for this rash on my chest, neck, and back that just wouldn't go away. I have photosensitivity too so I have to be careful of the amount of sun I get. Well, I had gotten a sunburn and thought it was just that - but, it wouldn't go away and stayed bad. So the doc said Rosacea and he gave me the metagel. Overnight the bumps got better, not gone but better, but the red and swollen stuff is still there (my whole upper chest and back of my neck and upper back).

Now, I read that you should keep up the treatment, if it is working, even when you are not having a flare - have you had luck with that?

Also, I think the chest area was irritated by the sun but not sure but the sun and warm is what helps my face. Any ideas? Also, mine showed up a few days later - can this be normal or is it possible it was something I was putting on the slight sunburn...which I have used before - none of my products were new. My diet hasn't changed except for dropping bacon--last of the processed meats--I am now only using my homemade sausage.

I am really hoping it isn't the sun - we have a boat and spend all late spring and all summer on the lake - every weekend.

[Lynxear]

Well, I am a long term sufferer of rosecea. In my case it is genetic. My father who died at 78 had pimples to the end of his days. He never squeezed his pimples which personally I thought was a mistake. As a result there was one year in his forties where his nose grew to twice its size and he had it surgically pared back. All of the children of our family check out the size of their noses regularly.

The loss of self-esteem is the greatest problem in my opinion. As a youth I didn't like to go swimming since I always had big zits on my back...it hurt my social life too since I never had a girlfriend until my mid twenties because of it. I would wear sweaters since the zits on my back would burst leaving blood stains like I was shot.

In my late thirties I had had enough of this nonsense and decided to take Accutain (vitamin A). This was about 20 years ago. This was not the beginning of the use of this drug where they had no clue as to the dosage but then again they were not perfect.

As I have said before I suffer from extermely high blood fats (triglicerides). It was a 90 day treatement as I recall and after 3 weeks my roscea disappeared!!!! I was really happy....cloud 9 stuff. But your skin dries up and your lips start to crack and bleed....but it knocked down ...it was working. After 6 weeks my blood was flowing like treacle from any cut. My doctor was quite concerned and wanted me to stop it because of possible kidney damage....but I resisted for one more week as I wanted to get rid of the problem.

After 8 weeks I reluctantly stopped the treatment. The rosacea came back on my face a little but at least the pimples on my back stopped. I don't regret having taken this treatment since I look 90% better. I look at my siblings and they are far worse that me still.

I hated my mother in early life since she blamed the pimples on

1. Not cleaning my skin properly - FACT: you can be squeaky clean and it comes in as bad as ever.

2. Eating fatty foods and chocolate - FACT: for me anyway I could eat chocolate and peanut butter or not it made no difference before or after treatment.

Actually in looking back on it...my social insecurity in my teens and twenties can be directly traced to my mother ranting on me for not being clean enough......PLEASE DON'T DO THAT TO YOUR CHILDREN.

Today my rosecea is 90% undercontrol. I still get a monster zit on my nose once/month...usually if my blood sugar is out of whack. Through trial and error I found out using Bactroban Cream (2% mupirocin) (I think it is under prescription now) rubbed into my zit kills it overnight. But I only use it on my nose and it does work....doesn't take much more than a light smear rubbed in.

When I lived in Thailand it is soooooo hot (low for the night is +25c). I developed "prickly heat" on my thighs. You shower in that country at least 3 times per day. I used an anti-bacterial (green soap) when I showered and it helped a little.

Bottom line is that if it is genetic like in my case, you just have to live with it. WC Fields had to pretend he was a drunk most of his life to cover up the fact that his nose was red and swollen from rosacea...being drunk was more socially acceptable back then

[jenvan]

Lynxear--

I agree on the self-esteem, it is frustrating! But you look like a handsome man in your picture!! Glad the accutane helped. I had a few friends go on it for severe acne. So you notice a link with your blood sugar then?

Kate--

Well, one of the big triggers for most folks is sun exposure (isn't it ironically frustrating?? ) I know mamaw did the metrogel with not much help. I'm not sure who else has tried it. I've been doing it for a few weeks, maybe 1 1/2 to 2 wks once a day and mine is still getting worse. Arg. I'm trying to take "cooler" showers now, which can make it worse too. Haven't found a link to any foods yet. Frustrating...

[Lynxear]

Lynxear--

I agree on the self-esteem, it is frustrating! But you look like a handsome man in your picture!! Glad the accutane helped. I had a few friends go on it for severe acne. So you notice a link with your blood sugar then?

Thanks for the compliment but even in that picture you can see evidence of rosacea. I live in Alberta, Canada. That picture was taken in late fall. I am not a person who is a sun worshipper. You will note that I appear to be well tanned in this picture. Well that is in fact due to rosacea. Luckily it looks a bit like a tan but the redness is permanent and due to the rosacea.

Yes I do note a blood sugar link. Since I have brought my BS to near normal, I rarely get a large pimple now. But there are little annoying ones. Being relatively wheat free (I say relatively since I avoid bulk wheat....not tiny amounts in sauces) now I don't have much problem with my sugar ( a new med seems to help too), also my blood fats are falling (totally due to reduced wheat)..

Heat is a problem...but it is the sweat from being overheated not the the heat itself. I wear short sleeves all the time but got no pimples there while in Thailand. I didn't get an increase in pimples on my face either. But you sweat alot in Thailand....it was on the front of my thighs that I developed this "prickly heat" pimples. Lots of sweat....rubbing of material on the skin, all had its effect. Anti-bacterial soap and showering with it 3 times/day helped a little but it was embarrassing. I never went swimming while there, though some people said salt water was good for this kind of thing.

[kabowman]

I agree - heat and sun seem to make mine worse too...the doc actually laughed when I told him I try to keep covered up, wear sunscreen, etc - on our boat. Well, mine only gets better during the hottest months and when we are out all the time but this time of year it seems to act up the worst. Not sure how to work that one out.

Mine started originally when I added a lot of eggs into my diet - I don't want to give them up to try either.

I always look like I have a slight sunburn now - but my nose is getting better, slowly, very slowly. Most of the bumps are gone - just the swollen red look.

I think it is also affecting my eyes.

Jen, my doc is having me do the metagel (0.75%) 2x daily and from what I have read, it looks like we should do this for life to prevent flares but I will be checking back with my allergist mid-June.

[jenvan]

Kate--

It is an annoying disorder... Glad yours has gotten better though. I have less of the flushing...do get some redness, but more of the bumpiness. I bought some new products last night in the hopes of reducing redness and improving my skin again. I bought to Eucerin redness reducing products. They aren't all-natural like the other products I use...but what the hell, its worth a try. I'll stick with the metro for a few more weeks...but am thinking of going to see another dermo, or go back again to the other.

What do your eyes feel like? I have been having problems with mine. Not sure if it was the rosacea or if maybe I do have Sjorgren's... I don't feel like there is grit in them, like some rosacea folks describe--mine are hot, dry, sensitive...

[kabowman]

My eyes often feel gritty and dry. I use an OTC eye drop about 1-3 times per day and it helps. Of course, it could be my allergy meds or my allergy eye drops too but for now, I think it is more linked to the rosacea.

I use Eucerin or Oil of Olay depending on what SPF I want - one has 15, the other has 30.

[mamaw]

I also have the eye problems going on for a long time now.

Along with the rosacea I have the cornea erosion, where the cornea flakes off in micro bits. I was told it was was a part of rosacea that some get. Mine feels like I have an eyelash in my eye but there's nothing that I can see in my eye. I had to have my one eye lasered twice to remove the particle. Then he told me to use muro 128 oinment at night & drops doing the day. I couldn't use the drops so I use refresh tears.The oinment works well for me at night. But I have to lay in bed and wait for my eyes to open gradually because when I try to just jump up quickly and open my eyes it feels like I'm being stabbed directly in the eye ball. It has actually forced me back down once I was sitting up. In the mornings if feels like my eye is glued to my eyelids and it hurts tons if I force it open.I do not have the pus in the eyes like some rosaceans have nor do my eyelids get flakey. I do have a thickening of the eyelids.The sun kills my eyes.When I have in the past opened or forced my eyes open my whole side of my face swells and get red and very hot. I look like i was punched in the eye socket. Now that I smarter about this problem I splash ice cold water in my eyes every morning and it helps keep the heat out of them.

You can buy the muro 128 otc but it is kept behind the counter because it is so small one could swipe it to easy so they hid it.It last a long time as you only use an 1/8 ribbon in the eye.I get mine at Wally's World ---it's a few bucks less there....

red face,red eyes , celiac's what more can one ask for in this world!!!!!!!!!!!!!!

HI Jen

please be careful what you are trying off the store shelf......not all stuff they say is okay for rosacea is. There are alot of weak claims lurking around out there..

mamaw

[jenvan]

Thnx for the word Sande...I cked for the products on the rosacea forum and several folks had tried both and had success...so we'll see. Need to go back to doc--Or maybe just be patient? Feel like metrogel isn't doing a damn thing. This is really getting me down...I need to figure something out. (Like we all don't want to "figure something out though!") Sorry for your eye trouble--sounds frustrating. Glad you've found a system that works for you though. I called a new gp/internist to make an appt...maybe he'll have some ideas, thoughts on eye issues too. I've really been having some moments where I felt like crying...then thought of how crying would make my rosacea worse and nipped that in the bud!

[Mme]

Thnx for the word Sande...I cked for the products on the rosacea forum and several folks had tried both and had success...so we'll see. Need to go back to doc--Or maybe just be patient? Feel like metrogel isn't doing a damn thing. This is really getting me down...I need to figure something out. (Like we all don't want to "figure something out though!") Sorry for your eye trouble--sounds frustrating. Glad you've found a system that works for you though. I called a new gp/internist to make an appt...maybe he'll have some ideas, thoughts on eye issues too. I've really been having some moments where I felt like crying...then thought of how crying would make my rosacea worse and nipped that in the bud!

I've had rosacea since my early twenties. Both my parents have it so I was doomed. It definitely flares with diet. We just discovered the gluten link recently, but here are some other things from almost 15 years of trying to control the stuff.

1. Noritate cream works better for me than Metrogel. It's also metronidazole but in a cream base. My skin is too sensitive for the alcohol base of Metrogel.

2. Rosacea definitely flares with candida in the body. Probiotics are a very good idea.

3. Indian sandalwood powder will bring down a mild flare usually. I buy it in boxes for $3 from an Indian grocer and it is extremely cooling for the skin.

4. Sunscreen is definitely mandatory but finding one you tolerate in the heat is hard. I've been using La Roche Posay but now I have to do a gluten fact check on them. Lily of the Desert was pretty good, as I recall. But still must check out gluten!

5. Sulfites in wine SUCK. For me at least. Red wine will bring on massive flares. Some reds are cleaner than others. Still, vodka and gin and white wine are a little safer.

6. Finding a moisturizer is murder. I seem to tolerate Weleda products in small amounts. That's about it.

7. Watch all of your other skin contact products and also your cleaning agents. So, you should be on extremely mild shampoos and conditioners, gentle laundry detergents, non-chlorine household agents, etc. I use a lot of Ecover and Seventh Generation.

8. I don't know anything specific about psoriasis. I wish I could help you there. But I do know that a lot of skin things are interconnected, eczema, psoriasis, and rosacea among them.

9. Although steroids are bad, you actually need a moderately strong topical steroid like Dermatop to bring down a genuine purple bumpy flare. Just in small amounts and for short duration.

10. Eye drops are key. Safe ones. Natural tears type. Or homeopathic ones (which I've used recently). Steaming your eyelash base with a warm washcloth can help keep sties from forming (did I mention sties as a lovely side effect?)

Good luck and lots of sympathy for having this annoying and difficult but usually manageable condition.

[jerseyangel]

I have recently started using Zia Moisturizing Cleanser for my face. It is gentle--no harsh detergents--and leaves my face clean, not tight, and no redness/painful areas. I have a difficult time finding cleansers for my face, and I am really liking this one. Thought I'd share!

[jenvan]

Mme-

Thanks for all the info... I will have to ck out the cream version of the metro--the regular does seem a bit harsh. Any other foods you notice as triggers besides gluten or wine? My rosacea really started after going gluten-free I do use all natural cleaning products, so I'm good there. What are your homeopathic eye drops like--what's in them?

Patti-

Where do you get Zia? In drugstore or mall? online?

[jerseyangel]

I get mine at Wegmans (a large grocery store). They have a big, impressive natural care section. My local health food store carries it, too--although they don't have a lot of variety. Some of their products do contain gluten, most do not. Their customer service is very good, I've found.

Open Original Shared Link

[jkmunchkin]

I've been wondering the last couple weeks if I may be developing Rosacea. I noticed my right cheek seems to be really blotchy lately, and I've been breaking out a lot. How do I know if I have it?

[jerseyangel]

Hi Jillian--Mine looks more like a sunburn that goes from one cheek, across my nose, and over to the other cheek. It does not get "bumpy" very often, and even then it's confined to my nose area. Actually, it was my gyno. at the time who first commented on it. I checked with my family doctor, who confirmed that it was rosacea.

[jenvan]

Jillian--

You can get severe flushing, constant facial redness in areas, small varicose-like veins in the face and also bumpy/pimply type areas on the skin. Go here to see some pics--they are pretty severe: Open Original Shared Link

[kabowman]

My cheeks and nose just started out a red, then the bumps developed, then the v-veins, then my chin went red, then it went to my chest and neck, then the bumps started there. Of course, mine started about 7 or so years ago that I know of - it may have started sooner if I knew what to look for - it was, oh, my face is red all the time.

I just look like I have a constant sunburn.

I even mentioned it to my dermatologist last fall, and he said, oh, that isn't that bad. Well it might not be to him but it is annoying to me - I even had to start wearing some foundation to help even out my color which you aren't supposed to do and I don't wear much make up - I don't see that doc any more. My allergist manages mine.

[jenvan]

Kate-

That's nice your allergist can help... I am going to 2nd the other dermo I've been to in the past--curious if he'll have any other thoughts/ideas.

Also will say...have been using benzol perioxide...and that seems to help mine. As I've said...mine is more pimply than flushing.

[Mme]

Eye Drops: Similisan Dry Eye Relief

Open Original Shared Link

I get them at Whole Foods.

The active ingredients are Mercurius sublimatus 6x, Belladonna 6x, and Euphrasia 6x.

Inactive: Borate buffer, sodium nitrate, silver sulphate (preservative), purified water.

They're a bit pricey but they are really soothing.

As for food triggers, anything spicey. Anything. Also sour foods (pickles, etc.) in large amounts.

The white pimples are a pain and a half. I have lots of empathy. The way I get them, they look like hives. Big red sploch, small white nasty bit. You need something really gentle on them. I think the Noritate brand cream of metronidazole would be much better. It tends to be more expensive BUT I've seen Metrocream (which I've never used) by Galderma today on the list of NOT gluten-free or suspect on the Wheaton gluten-free support group drug list,Open Original Shared Link

(I had a reaction yesterday and had to recheck all of my medications to make sure I hadn't missed anything . x.x)

[jenvan]

Thanks for the info...my eyes are bothering me worse today....just feel really hot/burning.

I will mention the noritate to the dermo on Tuesday too.

[jerseyangel]

Jen--once you get a handle on it, I wanted to let you know of a trick I do with my Bare Escentuals. (I remember you saying you use it too) I take Bisque (original) and apply it lightly over the red areas--for me, my nose and upper cheeks. Then I put the foundation on over that. It really hides the redness, and lasts. Good luck at the dr on Tues!

[jenvan]

Jen--once you get a handle on it, I wanted to let you know of a trick I do with my Bare Escentuals. (I remember you saying you use it too) I take Bisque (original) and apply it lightly over the red areas--for me, my nose and upper cheeks. Then I put the foundation on over that. It really hides the redness, and lasts. Good luck at the dr on Tues!

Hey, that's what I do too-thanks! Great minds think alike !!!

[jerseyangel]

So true!