First week on Soolantra

[steph]

I have been dealing with the yellow crusts for almost 6 years now. Everyone here knows how it is, you wake up in the morning and check for face for any new ooze, or red bumps which might turn into it. I have been repeatedly told that my problem was impetigo, but I knew that wasn’t true. Multiple cultures of the ooze itself and carrier sites have come back negative, showing only “normal flora”. Impetigo treatments were not a permanent solution to me, as the lesions always came back after.

The lesions I get occur primarily on my nose. I have had them in different parts of my face, but they’re usually insignificant. The closer to the nose they happen, the worse they are, to the point of having to take off work / cancel plans so I could sit at home and dab the lesions dry as they ooze.

I have noticed a few triggers - if something very stressful happens, I’ll get a lesion. If I drink alcohol, I’ll get a lesion. If the wind is very bad or if I take too hot a shower, I’ll get a lesion. But sometimes, they just come out of nowhere, with no identifiable triggers. I have worked in infectious disease research and epidemiology for the past two years and have gotten to know a lot about the subject. I have never seen a patient (or anyone else besides you all here on this forum) with the same thing I have.

A few months ago I was prescribed Soolantra, which was easy enough to get because derms have told me before that I have rosacea (due to my overall complexion). I was very afraid to start due to the possible bad first reaction. Last week I had a lesion the size of a dime on my nose. I decided it was time to start the Soolantra after the lesion healed. For reference, I have not gone longer than a month and a week without getting a significant lesion. There are times when I will get new ones every few days and there are times where I won’t have any at all.

This first week turned out well. I think I may be out of the woods as far as the first reaction is concerned, because I did get three small new lesions which healed. Hoping there won’t be any more, but I’m more than happy to keep everyone updated. I’m using Soolantra every other day, about half the size of a pea, and spreading it all over the bottom half of my nose (where the lesions are the worst). It seems very gentle, I noticed the slightest stinging upon application which faded away within five minutes. I did notice, as many others have, that it causes dryness, but nothing a bit of Aveeno can’t fix.

I started using the Soolantra on Friday, and this was my nose on Sunday:

Monday (a bit of yellow ooze):

Tuesday:

Thursday:

Today (Friday):

Hoping for the best as I continue the treatment.

[Tso]

Thanks for sharing your story.

My lesions were more evenly distributed over the face, but I also had them on those areas of the nose. I was wondering, because in your case its closer to the center of the nose, do you often have a runny nose?

[steph]

Hi @Tso. Thanks for creating this forum, it brings me comfort to know I am not alone. I don’t often have a runny nose, only sometimes in the spring when my seasonal allergies flare up. More often, the worst lesions I get are around the tip of my nose, not underneath like shown in these photos.

I’m beginning to think more and more that this is some unnamed autoimmune disorder. I know that having a close relative with an autoimmune disease makes it more likely for you to develop a different autoimmune disease. This is true in my case, in my immediate family. Would you be willing to share if this is also true for you?

[Tso]

My father has psoriasis but looking at photos of psoriasis, I can’t member having seen him with it. I should ask him. And he has some mild form of arthritis.

My theory is that the problem is caused by demodex carrying bacteria like staph and protecting/hiding them from antibiotics. This could explain why Soolantra is helping, even for a long period after stopping with it (Soolantra has anti inflammatory properties apart from being able to kill demodex, but I wouldn’t expect anti inflammatory to work for such a long period after stopping with Soolantra.) I did saw a study reporting that demodex is able to carry bacteria. Staph bacteria are able to cause impetigo, which maybe it the closest medical condition that matches the skin problem (although it doesn’t match in common size, location and treatment). Staph bacteria can be adapted to the environment by creating biofilms to protect themselves from antibiotics.
My lesions started with eye lid problems (bumps and itch, causing thick/swollen eye lids), if I remember correctly. (In the beginning I may have ignored the problem, so I cannot exactly tell a point in time when I first saw it or oozing lesions). I once pulled an eye lash out that was near a bump on the eye lid, and I saw nothing unusual under a microscope. Then I managed to pull the eye lash that was right on the center of the bump, and saw multiple demodex mites. This makes me belief that the eye lid bumps itch (and later also crusts) were caused by demodex. The problem disappeared shortly after starting Soolantra.

Almost everybody has demodex. Demodex can cause problems when the population exist in abundance on the skin. But in my case, I don’t think there was an abundance, judging from visual inspection with a skin microscope.
Here’s a Youtube video that I created with it: https://www.youtube.com/watch?v=PFUz9JEW3Bo

[steph]

This is so interesting as I have also had issues with eye swelling growing up. I would go to the doctor for it and they would tell me it is a stye and prescribe antibiotic drops. The full on condition on my face didn’t start until 5 years ago though. As I’ve gotten older, I’ve noticed intermittent eye dryness - do you ever get that as well?

Could you describe to me your course of treatment with Soolantra? You’re not using it at all now? I haven’t had any lesions since those few in the pictures above, but it is early yet.

[Tso]

I did have dry eyes years before the disease, but that could also be caused by eye contacts or by the contact lens cleaning solution. I’m not sure if I had eye dryness when I started to have the disease, but I did have eyes that were itching, often had bumps on the eye lids and were sensitive for sebum, and were giving a stinging feeling during that period.
The eye problems quickly went like completely away when I started with Soolantra.

I did got some eye stinging and itching again a few months ago. Which maybe was caused by a period or recurring flu or common cold, in combination with me rubbing my eyes. But just in case, I started using Soolantra for a few weeks again, because the itching stayed (without any lesions), but it’s gone again.

I started using Soolantra in August 2015, if I remember it correctly. At that moment, I just stopped using topical triamcinolone (which I used for the disease), which gave a large breakout due to its withdrawal symptoms. This combination makes it a bit difficult to determine what was causing what during that transition phase, but to me, it felt like Soolantra was reducing the withdrawal symptoms quickly. It did got a number of small lesions when I started with Soolantra, but they were smaller than the regular lesions. This also suggested to me that Soolantra was doing something.
My skin did felt a bit red and irritated sometimes when using Soolantra, so I used it combined with something like Cetaphil cream (which is also the case ingredient of Soolantra) or another moisturizer.
My skin got better and better within days or weeks. Till I was like 90% clear, which made life a lot better.

But I never reached 100% clean, even not months after starting with it and continously using it. At some point, I stopped using it, because a dermatologist wanted to see the lesions more clearly. But the lesions didn’t really came back as I would expect. It stayed like 90% or maybe 80% clear. I’m not sure how much I kept using, maybe continous or maybe a bit less.

Then somewhere in the beginning of 2017, after reading some positive posts about Sudocrem on this forum, I started using Sudocrem for a few days. I used a lot, and a thick layer while staying at home. It was way to much to go out in public, because when I would look like a white face painted clown or something like that.
Sudocrem did irrirate my skin, but after stopping with it after using it for a few days, I never saw any clear oozing lesions anymore. Even till today. So I consider myself healed.
If I remember it correctly, I did use Sudocrem or something like it before, without these results, but maybe I did use it too short, or maybe it was the combination of Soolantra followed by Sudocrem, that did the trick.

So I’m not using Soolantra anymore. But if I get itching eyes again, maybe I apply it again for a few days of weeks, just in case.