I've had this for 15 years!


#1

Hi everyone, I can’t believe that I’ve never stumbled across this form before. My first “pimple” was in '03 and I can remember thinking that it was so unusual because it itched and had several small whiteheads. Well, then it popped and the oozing started and I honestly don’t think i’ve had more than one or two days without one of these sores since then. I get them all over my face, eyebrows, lips, nose, cheeks, tops of my ears and occasionally my neck. I can feel them start to develop, it starts with itching and a tingle almost like a cold sore. If left untreated they can grow to the size of a dime, oozing constantly with the dried yellow crust building up. I’m 44 years old, It’s embarrassing and uncomfortable to say the least.

When it firs started I saw 4 or 5 dermatologists and it always started the same way, “it looks like Impetigo, let’s try some antibiotics”. I would hand them my records from the last Dr. and tell them that it wouldn’t work. I was even instructed to bath head to toe in antiseptic skin cleanser to “reset” my body bacteria. I did this more than once. Then it was the infectious disease specialists who couldn’t come up with a diagnosis either.

Along the way i’ve had at least a dozen cultures done and even a biopsy all of which produced… nothing.
I’ve tried altering my diet to no avail. Right now I’m trying to cut out all sugar, let’s see what happens.

The only thing that helps me is a topical steroid called Fluocinonide and i’ve been using it for more than 10 years. I have tubes of it everywhere, my cars, desk, night stand, etc…

I can’t believe that no Dr.'s can figure this out. I’ve given up and hope that one day they go away just as quickly as they started.


#2

Try Rosiver if you are in Canada Your story sounds exactly like mine I used rosiver for a couple of months it did give me some redness and dry skin which I treated with a moisturizer called Cervae which is supposed to be better for sensitive skin
Once I started using it I had one
It’s now been over 3 months and I have nothing and I completely stopped taking it now for about a month
If you are in the states it’s Soolantra basically I’m told the main component in both is Ivermectin
It’s worth a shot good luck


#3

Welcome on the forum :slight_smile:

Like @letmebeclear says, you should give Rosiver a try. Outside Canada, Rosiver is known as Soolantra. It contains ivermectin and is used topically. A lot of people on this forum have good results with it.

About Fluocinonide, you should be careful with it. If you suddenly stop with it, you may get a large rebound effect, due to your skin becoming addicted to it. This is called topical steroid withdrawal (TSW), which I experienced myself with another topical steroid called triamcinolone. Soolantra may be able to reduce the effects of TSW if Soolantra is going to work for the oozing lesions. So if you’re going to stop with fluocinonide, you should do it very slowly. Maybe first start with Soolantra for some time, and when everything is stable, slowly reduce fluocinonide. Maybe you should also try to plan this reduction, for example not before something like a wedding, but in a time period in which you don’t have much things planned and maybe can stay at home.


#4

Welcome aboard, mate. You’ve lived for many years thinking you were the only one with this disease. You’re not alone, we have your back. Joining with the others, I say to use Soolantra. My first two weeks on it was a little funky, but then I’ve been completely clear so long as I apply it twice a day just between my eyebrows and down the sides of my nose. I can usually squeeze about a year’s worth out of a single tube this way.


#5

Yup welcome to the party. I have some idea what you’ve been through and, like the others, I’d suggest soolantra/ rosiver as your best option. It’s hard an amazing effect for so many. It is usually not immediate so give it a good while (like a month to 6 weeks) especially seeing as you’ve had it for a good while. You should start to see improvement earlier though but sometimes there’s a die off effect. This fits well with the theory that our condition is caused by demodex mites or the bacteria they carry inside and the invermectin kills them off.