How I’m Finally Taking Control Over My Psoriasis After Years of Failed Treatments

Sprawled across the floor is a variety of prescription and non prescription creams and ointments and moisturizers

Chronic illness and complex health issues aside, having skin issues can easily be one of the most frustrating and self image disturbing problems people face.

I’ve had psoriatic arthritis officially now for almost three years and have gone through way more ointments and social media influencer cure alls than I ever imagined possible.

My history with my skin has been a long and complex one, and one that should have gotten me a diagnoses years before I finally had a painful arthritis flare. When I was in high school, and especially in my early years of college I used to get these little skin flare ups along the side of my nose.

My dad had a history of various eczema type skin issues and had given me a tiny ointment to use on the irritated area and it was passed off as a thing that happens sometimes.

I also thought it was a pimple – as that’s how the patches would start – I’d pop a tiny pimple on the crease of my nose and as it would heal it would turn into a flaky patch of skin. This patch would then grow as I’d compulsively pick at it until I’d have quite the hideous scab on the side of my face.

In my second year of college, the small patch on my nose became permanent.

I had moved to a colder climate and this made it nearly impossible to adequately moisturize my face and keep the scabs from forming even if I could keep myself from aggressively picking at them.

When I moved back home in what would have been my third year of college and was instead the beginning of my journey with disability, I connected with a new primary care doctor.

Aside from the regular onboarding and getting to know her, the small patch on my nose was brought to her attention. This was 2018. She was very quick to tell me that it was nothing, I needed to stop picking at it, and that every time I had the urge to touch it I should apply this cream she sent me home with. From my understanding she gave me something akin to Neosporin.

My history with compulsive picking may have contributed to not being able to get proper treatment. Long ago as a child I remember being scolded for the way I’d rip apart my cuticles. Other kids had nail biting issues, I bit my cuticles. This remained an unhelped habit into high school until the very first time I wore a pair of stick on fingernails. Suddenly I wasn’t able to bite my cuticles. The fake nail was just high enough and unmalleable that I couldn’t successfully bite or pick at them and for the first time in my life, my cuticle beds healed.

So much of the picking habit is something that is done unconsciously and even while sleeping. And to many doctors, admitting that you have a long history of being unable to control said picking makes you a bit of a difficult case that probably doesn’t want to get better and definitely isn’t going to have success with any treatment since I’m so actively contributing to it not having the time to heal undisturbed.

Now y’all have to understand, and I’ll give you a visual as well. I was walking around with a giant psoriasis scab on my face BEGGING to be properly diagnosed.

A selfie wear the side of my nose is visible and there’s a large red raw flake where I’ve picked at my face

You can see on the right side of my nose a large red mark where I’d repeatedly peeled off each subsequent flake of skin to the point where it was too painful to even apply makeup on top of the open wound.

I walked around with these open nose wounds from 2018 to late 2019.

Eventually, I began to get really self conscious and began developing some acne as well. This pushed me into some serious skin care education and by the end of 2019 I had successfully made my nose patches go away, mostly with the aid of Cerave Healing Ointment.

I highlight these early days because to me, any one of the handful of doctors I saw with these incredibly visible patches on my skin should have been able to diagnose me with psoriasis and I may not have been so incredibly lost with what came next.

It was February of 2020 when the arthritis flared up. Surely due to getting ready to move across the country, a choice I still have not reckoned with properly, and the clear incoming pandemic that was rapidly shifting from whispers in chronic illness circles to national news. This flare was brought on by an extreme amount of stress.

At the same time, a new skin patch appeared. In both of my ears.

The skin patches this time probably expedited my ability to get my arthritis diagnosis and I was quickly pushed to separate management for the skin portion and the joint portion of my care.

I learned over this time that my grandfather had a childhood history of disabling psoriatic arthritis and that my dad as a kid suffered with extreme scalp psoriasis. With this new knowledge, I was able to go into my first dermatology appointment with a specific list of ointments that had worked for my dad that I wanted.

I was given many boxes of hydrocortisone cream as a go to “old reliable” option. I also began Mometasone cream, the topical my dad had the most success with. For when I’d end up with scabs that would bleed and just wouldn’t heal, I was also given Mupirocin to help stave off infections that could pop up.

I was told to simply keep applying these, while also having limits imposed on the stronger ones like “don’t use more than a week in a row” meaning that I never really reached a fully healed state.

I was told that if patches came back on my face to avoid using the stronger ointments on my facial skin as they’d pose more risks than in my ears.

These creams really didn’t work all that well and the Mometasone in particular just made scabs bunch up and be thicker, and therefore more desirable to pick at.

There is of course a frustrating aspect to the picking habit where there’s some satisfaction to peeling off skin or a scab even if every fiber of my being tells me it is bad and I am actively hurting myself.

In late 2021 I switched things up and began relying on very sharp pointy stiletto fingernails.

The creams weren’t working and everything I’d known about my compulsive picking habit said I had to quite literally disrupt my ability to effectively pick.

My dermatologist didn’t like this, although she admitted it was a creative solution. Her solution was for me to try skin grafting or to take some anxiety meds and hope they would stop the picking. Now, this was the first time in my life that I’d gotten any kind of information on the lifelong compulsive picking. Technically it is called: Dermatillomania – a mental health condition characterized by, you guessed it, compulsive skin picking.

The problem here was I was well on my way to my second instance of serotonin syndrome which would eventually make antidepressants and anxiety medications a class of drugs that are not viable for me.

Which put me back at square one, I’d simply have to break the habit on my own.

And skin grafts were a comical suggestion for someone who literally would pick them off, I simply cannot be trusted with something like that even if it in theory could work. For those less familiar, the idea was that I’d have an in person appointment where the medicines would be layered onto the wounds and then a graft placed to keep them protected. This would then be left on for upwards of a week with special protocols for keeping it protected like in the shower. For someone who tends to pick at my ears while sound asleep, I’d likely peel these grafts off in my sleep negating the entire procedure.

I left my last appointment discouraged with only minor advice to continue rotating topicals, to avoid any moisturizers that used fragrance, and to even give it a whirl with ketoconazole cream – an anti fungal – just in case the source of the scabbing and flakes might just be fungal in nature.

The reality was I was left with fake nails that limited a few other areas of my life and hopes that whatever weird topical cream was suggested next on the internet might just work.

What this boiled down to was years of frustration. Years of bloody pillowcases and not being able to roll over and sleep on my side because of how physically painful my ears had become. The scabs had taken over my ears, and even though my nails helped modestly the moment I’d have to take them off and prepare a new set I’d be back to square one. I’d rip apart my ears. I’d make a bloody mess. I’d undo any progress. And then I’d get fresh nails. Every two weeks, the same story.

Eventually, it just made me angry.

How absolutely absurd that I must sit here and watch commercials for biologic drugs that will clear peoples skin but to not even be eligible because of how narrowly contained my patches are. Sure, I don’t want the side effects of biologics, but to see other people experiencing clear skin? It was infuriating.

But it made me realize my dermatologist was wrong.

This isn’t about me not picking at my ears but had everything to do with me not having a good enough treatment that simply outpaced my impulse to pick.

It was a day of extreme frustration that I finally took to Twitter to outline just how emotionally taxing and physically hard this all was. Ranting and raving about how no matter how well controlled my arthritis is, none of my doctors cared AT ALL about the patches in my ears.

That picking at my ears actually causes my arthritis to hurt. That I am likely getting strain injuries on top of the existing inflammation due to how I unconsciously pick at these never ending scabs. Shouldn’t a doctor care about the patches if it makes another condition worse? And just how tired I was. That nothing has worked.

I was shocked at the response I received. People who I had no idea also were constantly at war with their ears. People who also had given up on bothering with their dermatologist.

And finally, someone who had spent just as many years I had with the same exact problems and lack of success who wanted to share with me a combination that the Mayo Clinic’s Ear Nose Throat doctor’s had offered her: a compounded ointment of tacrolimus ointment and fluocinolone body oil.

She described to me how it worked like an ear drop and you would massage it into the affected areas a few times a day and after some time with this process, her ears cleared up.

I couldn’t believe it.

I reached out to my dermatologist extremely excited to request this compound, to which they wouldn’t advise me, wouldn’t do anything as an existing patient and said “we can see you in April” which… this was October of 2022.

I then reached out to my primary care doctor who rapidly replied that she wasn’t familiar with these ingredients and therefore wouldn’t help me.

Finally, I found another clinic locally who was taking patients immediately.

On December 1st, I met mostly the doctor’s nurse, but a new dermatologist briefly.

It was the most affirming appointment I’ve had in healthcare in quite some time. My nurse didn’t feel like my picking was a problem, she even pointed out that at least in her office everyone ended up working in dermatology because picking at skin was their guilty pleasure.

This doctor was familiar with the ingredients, but not so with it as a compound. He was happy to fill them separately and gave me slightly different guidance on how to use them. He assured me that since I’d tried so many other ointments that if insurance should try and deny it, he had everything he needed to appeal and get it covered. He also gave me the option to purchase it through them for $60 if it appeared I’d be waiting awhile for an appeal.

My instructions were to use the tacrolimus in the morning, generously applied to all areas that had patches. And at night, after a shower while my skin was moist to rub the oil into my skin.

He did inform me that tacrolimus, like other stronger meds come with a risk of skin softening after continued beyond a month.

I had pretty immediate results within the first week or so. The rate at which the skin patches re-built themselves and the thickness that was often the most satisfying to pick off, reduced dramatically. It also seemed to stop the patches from spreading.

A few weeks ago, I decided I wanted even better results and that his recommendation to only use each on once a day wasn’t going to get me there. I’d increase it to twice a day and I’d try and combine it like the initial compound had been. I would dampen my ears and then apply the oil. On top of the oil I’d apply the tacrolimus.

For the first time since the scabs began, my right ear is perfectly clear. I am still applying the oil as a preventative measure. I’ve stopped the tacrolimus in that ear since it doesn’t seem needed.

My left ear is making progress, but I am still battling myself with reopening the sore and having to start over. The sore however, appears smaller and more isolated as time goes on.

It feels like a miracle, really it’s just access to better medicine and more informed doctors.

Maybe one day I won’t have any scabs in my ears. It feels like a genuine possibility that the nagging ache in my arm from constantly having something to pick at, might become a distant memory. That I’ll be able to fall asleep on either ear and it won’t hurt.

That all seemed out of reach, too good to be true.

I thought I’d spend forever in this state of misery with this minor (because it’s literally tiny not because it’s insignificant) issue going unaddressed by every healthcare person and that because this was the normal I’d been sold, it would be reality forever.

For me, it’s looking like I too might get to experience the bliss of clear skin.

Maybe now, if you hadn’t heard of this combination, that could be a new opportunity for you too.

A.

please note that nothing in this piece is intended to be medical advice, please consult a doctor if you are experiencing skin issues or are interested in any of the mentioned topicals.

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