As the list goes on…

In addition to my autoimmune arthritis and other chronic illnesses, I’ve written about my skin issues. Right before my diagnosis of Sjogren’s syndrome, I was diagnosed with a benign skin disease called DSAP (disseminated superficial actinic porokerotosis).  I basically get these little circles on my skin. They get hard and sometimes flake.  Over time, they will turn red and look like chicken pox. I’ve tried a zillion creams over the years with minimal results. The only treatment I have found to keep the disease under control is to use cryosurgery (freezing the spots off with liquid nitrogen).  It’s painful. I sometimes have 50-100 burned off at a time. Imagine 100 bee stings all over your body.  It’s excruciating. I’ve learned to do it in stages because burning too many off all over my body tends to cause my arthritis to flare, it’s not a pretty picture.

Recently, my rheumatologist has been saying the she feels my symptoms are becoming more consistent with psoriatic arthritis than rheumatoid arthritis.  To be clear, I do not have psoriasis and DSAP has no autoimmune links and is typically genetic (but no one in my family has it but me). Recent studies have found that there have been cases where people had inflammatory DSAP, but no one has bothered to study me, so who knows what is wrong with me!  I’m a quandary!

Over the years, certain biologic drugs have had an impact on my DSAP.  Humira made it go away almost completely (but did nothing for my joints), Enbrel, Cimzia, and Xeljanz had zero positive effect on my skin and it progressed rapidly.  Now I will say, none of these drugs are made to treat DSAP, so any benefit is strictly an off label benefit.  Some biologics did slow it down dramatically, which I appreciate.  The rapid spreading while on other biologics is probably just typical progression of the disease.  I noticed over the past few months that it was spreading like crazy.  Recently, in addition to my DSAP, I’ve had a red, bumpy rash on my face.  So I went to the dermatologist for two reasons to cryosurgically remove DSAP and to diagnose the lovely red bumps on my face. I was afraid the bumpy red patches was the start of psoriasis…..because it didn’t look like acne or any other skin issue that I have ever had.  55f09698-c1a7-4783-933a-b45cbb9784e2I had 30-35 DSAP patches burned off.  It didn’t look too bad at first…..

But now that it’s blistered, e0ad6f7c-748a-45e6-9c04-1a8ea62861f6

I look like the monster from the blistered lagoon….. (I’m not going to show the spots that turned into blood blisters).

It typically blisters like this only when my inflammation is high.  I go back in a month to have the rest burned off. Hoping that my new biologic has a positive effect and the activity slows down the DSAP activity in addition to reducing my inflammation. I really hope it’s not too much to wish for.

As for the red bumpy patches on my face???  I now have Rosacea.  Yep. One more thing. My pharmacy still hasn’t filled the new prescription for it. I have to call tomorrow to find out if it isn’t covered by my insurance or just not in stock.  So the red patches continue to sparkle uponst my face for all to see.

I know that DSAP and Rosacea are not “serious” issues, but they sure are aggravating, annoying, and just make me feel ugly.

I need to get back to my happy place.  Time to snuggle with my furry ones and get a good night sleep.  I hope all of you have a happy and pain free week.  Be well my friends!

 

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

2 thoughts on “As the list goes on…

  1. I developed a nasty dermatitis a few years ago. It covered my back and legs and it would never go away. It itched so badly and no matter what I did I could not get rid of it. The dermatologist thought I was a munchausen syndrome sufferer. It finally took a special cream and even to this day when he sees me he comments about how stubborn that was. Yeah no kidding.

    Liked by 1 person

    1. Ugh, that sounds awful. Ironically, Georgia ended up in the hospital with dermatitis on her paws that got so infected it showed up in her blood work. I swear it is like I gave birth to this dog. I signed up for RA blog week. Going to start working on stuff this week!

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