Psoriatic Arthritis (PsA) – My 4-year Journey Leading to Diagnosis

I want to start this post off by prefacing that I am not a medical professional and am only sharing results based on my personal experience. Please consult a team of medical professionals if you are experiencing any of the same symptoms to receive a proper diagnosis.

DISCLAIMER: This blog post contains somewhat graphic images of my hands prior to medical treatment.

Did you know that March is National Autoimmune Awareness Month? Unless you have an autoimmune disease, my guess is the answer is no. Don’t worry, before this year, I didn’t know either.

If I am being honest, I have struggled with how to write this post. It has taken me a month to write because there is so much information to share. Where do I even start?

It’s a long post so pour yourself a glass of wine to sip on while reading along, or pop a bowl of popcorn if that’s more your style.

This year has been a roller coaster of emotions so summarizing it into a single blog post is more than a challenge. I’m also much more comfortable writing about food than auto-immune diseases (which I’m still actively learning about), so please give me some grace. At the same time, I am an open book, so please don’t hesitate to leave a comment or send me an email if you have additional questions.

I’m simply sharing my story in hopes to help people navigate Psoriatic Arthritis. From symptoms, to medications, to managing flare ups and everything in between. We’re covering all the ground. While everyone will experience a different series of events, I want to create a resource to help people like me. Something that I wish I had while navigating the path leading up to my diagnosis.

Psoriatic Arthritis is not new, but it’s new to me. And in all honesty, I never thought I’d be writing a blog post encouraging others to advocate for themselves. Many of you don’t know me personally, but it has been a year. A year of struggle. A year of learning. A year of growth. A year to pivot and take back control so I can enjoy life as I know it.

As you can tell from my blog and/or Instagram, cooking is a huge part of my life. My hands eventually got so bad that it was impacting my love for cooking and making cheese boards. I was dropping bowls, glasses, knives, etc. This is ultimately what set me over the edge to seek additional help.

Once I was officially diagnosed, I slowly started to open up about my journey on @rightbackspatula on Instagram. I received many DMs, which only left me questioning why I haven’t shared this sooner. So here we are! If I can help one person learn how to manage flare ups to enjoy life again, then sharing my story is worth it.

Let’s first set the stage…

What is an autoimmune disease?

Autoimmune diseases are when your body mistakes healthy cells and attacks itself, causing a flare ups or a reaction of sorts. Although living with an autoimmune can make life extremely challenging, they are chronic disorders not fatal. Meaning they are ongoing and may impact your daily life, but treatments are available to help manage pain. They can go dormant for periods of time, but they’ll never go away.

People don’t realize that there is no specific type of doctor out there that is skilled in diagnosing all types of autoimmune diseases. This is the most frustrating part that can take years to realize. Often times, a person must visit a variety of different specialists to receive a proper diagnosis. Not to mention there are many different variations of autoimmune diseases and sometimes the symptoms make it very difficult identify which one it could be.

One common misconception for auto immune diseases is that once you get on medication, you’re “cured”. Unfortunately, that is not true. Treatment plans can change over time, but there are many different variables that can cause flare ups, making it hard to pinpoint the triggers. Once you think you figured it all out, BOOM, another flare up.

There are also many different symptoms that someone could experience without knowing they are related to one another, when in fact they are related. I’ll touch on this more below…

It is said that autoimmune diseases are genetic, but to my knowledge no one else in my family had/has Psoriatic Arthritis. My mom shared that my grandpa would occasionally get psoriasis on his elbow. It’s definitely possible that it’s genetic, but no one was officially diagnosed as they didn’t have the same healthcare available as we do today.

The timeline leading up to my diagnosis:

For as long as I can remember, I have always dealt with skin issues. Far too many for my age, but I can’t change the cards I’ve been dealt.

I had shingles in 7th grade due to stress from standardize testing.

In high school I would get dry flaky skin on my eye lids. This continued through college, but improved over time. I attributed this to seasonal allergies, but hindsight is 20/20… all clues lead to psoriasis.

When I turned 16 my mom bought me a Sterling Silver Tiffany’s necklace. We quickly learned I’m allergic to all and any Sterling Silver…

In my early 20’s got Phytophoto dermatitis on a cruise. What is Phytophoto you ask? It is essentially a severe burn due to a reaction of acid, (in my case, lime juice from my cocktail) and the sun. My leg looked like a cheetah until I finally stayed out of the sun.

In my late 20’s I started developing melasma on my forehead. This is caused by hormones, commonly a side effect of birth control. I promise I’ll come full circle on this later.

Those are just a few examples, but needless to say, I always tend to keep doctors on their toes. I am the 1% patient population that requires doctors to pull our their textbooks. 😉 For as long as I can remember, doctors attributed a lot of this to contact dermatitis or eczema.

The timeline of events leading up to my diagnosis:

Let’s go back to Spring of 2016…

I was 27 years old and still dealing with adult acne so I decided to get back on birth control to clear up my skin. Keep in mind, I am the type of person that goes to an annual physical every year even if I feel fine.

As the months got colder, my fingertips started cracking. I attributed this to the cooler temps and dry air.

2017: The year I made the switch to cleaner products

I started off 2017 with a week long Caribbean cruise with my parents (picture below for good measure). The salty water and humidity did wonders for my skin. However, as soon as I got back to Ohio, my fingers returned to their cracked state. I started doing research on different products and ended up swapping out many home products for cleaner alternatives.

The cracking was limited to my hands, so I started with the products my hands came in contact with the most, such as laundry detergents and dish soaps. I also started wearing gloves when washing the dishes to eliminate as much direct contact as possible.

While I’m glad I made the switch, I can’t confidently say that I noticed a much of a difference in my hands, they continued to crack…

By the end of they year I was constantly wrapping new band aids around my cracked finger tips and would sleep with gloves on trying to retain as much moisture as possible throughout the night.

2018: The year I should have been diagnosed!

The biggest change I noticed in 2018 was how my nails were growing. My nail beds separated from my skin and my actual nails started growing in a very brittle, wavy fashion (picture below). Oddly enough, it was only 5 fingers — 4 out of 5 fingers on my right hand (every finger except my thumb) and my left middle finger. So odd!!

I sought out a new Dermatologist in hopes to get a fresh perspective. Once again, I was told I have eczema and was prescribed topical creams to help manage the cracked skin and the occasional rash that would appear. I was also cautioned to not overuse the steroid ointment because it can cause the skin to thin. According to my Rheumatologist, this is when I should have been diagnosed with Psoriatic Arthritis. One of the key indicators of this autoimmune disease is when the nail separates from the nail bed. Inflammation can cause nail deformity.

During 2018, I also had a blister form underneath one of my nail beds causing me to get on two rounds of antibiotics. Believe it or not, this was not painful, only uncomfortable. My doctor said it could have formed from overusing my steroid cream or potentially from a small cut in the kitchen or for another reason that I’ll never know. She didn’t seem too concerned. However, I became very self conscious of my hands because you could physically see something was wrong.

On top of my nail problems, allergies could not have been worse in 2018. I have always suffered from, but 2018 took it to a whole new level. From April through May, I end each day with dry, blood shot, itchy eyes that sometimes felt really gritty. If you wear contacts, I’m sure you can relate. Literally no amount of eye drops could help soothe my eyes.

After 2 weeks with no relief, I finally caved and made an appointment with my eye doctor. I was told it was Giant Papillary Conjunctivitis (GCP), which is an infection in the inner eye lid caused by allergies or bacteria. Small white bumps had formed on the inside of my eye lids, ultimately acting as a sponge that retracted my contact up inside my eye. No wonder my eyes were so irritated…

I was given 2 bottles of eye drops (steroid and antihistamine) to treat my eyes and was told to not wear my contacts for a full month. UGH! As someone that is a primary contact wearer, this was pure torture. I personally don’t like the way I look in glasses so this news left me leaving extremely disappointed. Especially since the weather was finally nice enough to hit up all the patios with my friends.

You may not understand how getting GCP had anything to do with my autoimmune, but just keep reading…

2019: The year I addressed my allergies…

Still curious as to what could be causing these issues, I continued to search for answers. In 2019, I started to experience more rashes on the surfaces of my hands, accompanied by small little blisters. I asked my Dermatologist order me a skin allergy patch test. My Dermatologist actually questioned my request and cautioned that it’s a fairly expensive test not entirely covered by insurance.

Determined to find answers, I went through with the test and wore the patches on my back for 48 (or 72hrs – I don’t remember the exact time). Patch testing is the process of applying 5 different panels to your back to look for skin reactions to substances including things like metals, dyes, chemicals, etc.

My results? Drum roll please…

A mild sensitivity to gold (face palm). Not only am I allergic to Sterling Silver, but now gold… I guess I can settle for platinum some day. 😉 My dermatologist suggested exploring seasonal allergies to continue testing.

Spring seasonal allergies are now in their prime… guess who was in glasses for another month dealing with another round of GCP? Yours truly.

Oh and remember that blister I talked about in 2018? Well it happened again, which continued to raise eyebrows. What are the odds I cut my finger in the same spot?? Something just didn’t seem right…

This is when I started doing some serious googling. Based on google image search I thought I had a form of eczema called “Dyshidrotic Eczema”, which is small, fluid-filled blisters that form on the palms, fingers, and soles of feet. They itch intensely and at times even cause a burning sensation. As the blisters heal, the skin will flake off. For me, this cycle started happening every 3-4 days. One cause of Dyshidrotic eczema is seasonal allergies.

I remained curious and began investigating allergy immunotherapy. Mind you, I passed out every time I got a new piercing and used to regularly pass out at my annual physical when they collected 2 tiny vials of blood. The thought of being pricked with 60 needles was less than ideal, but I wanted answers. Desperate times call for desperate measures.

As it turns out, I was allergic to 43 of the 60 substances. Everything from tree pollen, grass pollen, dust mites, cats, and even dogs? (I still don’t believe this one). I felt like I finally found the answer I had been looking for all these years. I signed up for the accelerated immunotherapy path and went through a series of shots once a week for 8 weeks before “graduating” to biweekly shots. The allergist warned me that eczema is the last thing to clear up with the shots and that it could take up to 6 months before I start noticing any improvements on my hands.

If you’re not familiar with allergy shots, they very costly and are a time commitment, but at this point I was willing to do anything for relief. Little did I know things would get worse.

To add some context around time commitment, I’m writing this in March of 2021 and I still get monthly allergy shots…

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2020: The year I hit my breaking point!!

This is a good time to refill your wine or popcorn! 😉

At this point, I was about 5-6 months into my allergy shots. I was (not-so) patiently waiting for “the eczema” on my hands to clear up, but my hands kept getting worse and worse.

And thennnnn COVID hit.

The world shut down and my allergy shots came to a halt. Like many, the wine and cocktails started flowing during this time. Simultaneously my hands became more inflamed and the made pain was more severe than ever. I knew alcohol was making things worse so I laid off the sauce as the world remained closed. My only goal at this point was to make it through a day without dropping something and shattering it into a million pieces.

By mid-April, I was waking up with little to no movement in my hands. The first time this happened, I thought I just slept in an unusual position, but after this happened multiple days in a row, I knew something more serious was wrong. This is a common psoriatic arthritis symptom called morning stiffness.

Towards the end of April, I went to my best friends house for a socially distanced happy hour and was sharing how much joint pain I had been experiencing over the past month. Mind you, she is a Spanish teacher and has affiliation to the medical industry. She looked at me and said “I think you have what my dad has”.

Of course I replied asking what he has and she replied with Psoriatic Arthritis.

To no surprise, I stayed up way past my bedtime googling anything and everything about Psoriatic Arthritis. IT WAS ME. Every single symptom I had experienced over the past 3.5 years was on that list. Everything started to make sense.

My symptoms:

• dry and cracked hands
• nail growth deformity/ separation from nail bed
• eye conjunctivitis
• inflammation
• skin rash/blisters
• itching
• morning stiffness
• joint pain

I finally saw a glimmer of hope, but still had to figure out how to get an appointment scheduled some sort of specialist that officially diagnose me… amidst a global pandemic.

I called my Primary Care the following Monday and scheduled the earliest possible appointment in early May. Because of Covid, my Doctor didn’t examine my hands up close and personal.

She suggested I see a dermatologist… Already did that.

She asked if I had been allergy tested. Yep. Already did that too.

Before she could offer up another idea, I requested a referral for a Rheumatologist. With a puzzled look on her face, she agreed to send over a referral.

I called the new office and the receptionist said their office was not taking any new patients at the time. TWO WEEKS WASTED! Sooo I called my Primary Care back and asked for another referral and expressed how my pain was getting worse. She said she would follow up with me once they called in my referral to another office. Two more days went by. Nothing.

Two weeks went by and I didn’t hear anything. I called my Primary Care and asked for a status. The woman I spoke to said they called one in and it could take 2-3 weeks due to Covid. I asked for the name of the Rheumatology office so I could follow up with them directly myself.

It’s now the end of May. I felt so defeated and was extremely frustrated that, as the patient, I had to follow up numerous times to check on status. I called my Insurance provider and asked the agent to send me a report of all in-network Rheumatologists in the Columbus, OH area that do not require a referral per my insurance policy. Within 15 minutes I had a list in my inbox.

I browsed for (maybe) 5 minutes and picked up the phone and called Ohio State Rheumatology immediately, only to find out they require a referral regardless of my insurance policy. UGH! I asked for the fax number and called my Primary Care office (again) and told them to fax a referral to that office that day. I tend to get bossy when I don’t get the results I want, but unfortunately I was left with no choice since no one else was advocating for me except for me.

Luckily, my referral went through in a couple of days. I finally had an appointment scheduled with a Rheumatologist 4 weeks out. This was quite possibly the longest 4 weeks of my life.

I am by no means telling you all of this to put health care workers on blast. We were all struggling during this time and health care workers were working around the clock trying to provide care and resources for the pandemic. I am also well aware that people were facing much more serious issues than cracked, itchy, swollen hands. However, I felt like my doctors didn’t care enough and weren’t pushing to get answers for me. Outside of a routine appointments, I never went to the doctor so maybe this is a standard process, but it took too long. Not enough questions were asked about my symptoms or pain. In fact, towards the end I was the one asking the doctors questions and guiding the conversations.

If you take one thing away from this blog post, it’s to keep fighting for yourself and take control when something doesn’t feel right.

July 2, 2020: ROCK BOTTOM.

This was a day I’ll never forget. While I was waiting for my Rheumatologist to come into the room, I snapped this pic. Even though I’m masked up, you can see the fear and the pain in my eyes.

This appointment was longer than any other doctors appointment I had collectively in the last 3.5 years. I finally found a doctor that listened to me and was willing to help. This was huge. This is the appointment I needed all along and the only reason it got scheduled is because of my requests. Sure enough, I was diagnosed with Psoriatic Arthritis.

That same day I had to go to the lab to get blood drawn and also had to get x-rays taken of my hands to look for joint damage. Despite the normal test results, I was prescribed with a whole slue of medications. I’ll break these down in a second blog post since we’re already on chapter 18 of this post.

August 2020:

New meds = frequent follow up appointments and routine tests.

My Rheumatologist shared that my treatment plan could take anywhere between 3-6 months for the medications to start working. Throughout this time, I had follow up appointments every 4-6 weeks to monitor my blood work and ensure I wasn’t experiencing any negative side effects.

The inflammation in my hands had already started to go down by this point, but the physical appearance of my hands had not changed much within 4 weeks.

October 2020:

My body had started adjusting to the medication, but this was still just the beginning. Although, I was beginning to manage flare ups, I also started experiencing side effects from my new meds. I felt like I was taking 5 steps forward and 2 steps back.

Overall, my hands were feeling [and looking] much better, but my hair started thinning and I experienced a sporadic days with extreme bloat. It felt like my body was digesting a brick. Talk about uncomfortable.

My doctor wanted to test me for Celiacs disease… another autoimmune disease. Thankfully these test results came back negative. It’s not uncommon for a person to have more than one autoimmune disease. In fact, about 25% of people with autoimmune diseases have a tendency to develop additional autoimmunes throughout their life. OH JOY!

December 2020

In early December of 2020, I decided to stop taking my daily birth control pills. I wanted to eliminate any other medications out of my system that weren’t required.

I went to Mexico and to no surprise my hands had cleared up from the salt water and humidity. I was fully anticipating a flare up upon my return to cold Ohio, but my hands never flared up! I guess the meds had finally kicked in and I certainly wasn’t complaining. This was the first time in years that my hands looked somewhat normal.

2021: The year I had an epiphany!

In early January I was talking to a friend on the phone and had an epiphany. I stopped taking birth control and my hands cleared up. My hand symptoms started in 2016 after I started taking birth control!!! OMG! I racked my brain of the timeline of events and hindsight is truly 20/20.

I hope you feel like you just found out the answer to the a murder mystery because that’s how I felt when I had this realization… it only took 4.5 years to figure out.

So where am I now? It’s March 31st and my hands look completely normal. I am working with my doctors to ask more questions about birth control, but I am positive that the pill was contributing to my flare ups. My Rheumatologist told me generally people flare up once they get off the pill because of the chemical imbalance. You’re talking to the person that had shingles in 7th grade… I’m the 1%, so I wouldn’t be surprised if I had the complete opposite reaction.

What’s next?

As you read above, throughout the 4 years leading up to my diagnosis, I visited my primary care physician, 3 different dermatologists, an allergist, an optometrist, and lastly a rheumatologist.

I’m still in my first year of my treatment plan so I’m still adjusting and learning side effects. Overall, I have seen vast improvements in my quality of life. Most importantly, I’m enjoying life again. I’m still working to build back muscle strength, but I’m happy to report that I haven’t shattered one glass in 2021. Knock on wood!

Part 2 coming soon…

xo,

Colleen