ArthoJourney: Phase I

Hey friends! I wanted to share the clinical manifestation and symptoms of my new diagnosis with you during this initial acute episode of my multi-joint Reactive/Psoriatic Arthritis that’s linked to my HLA-B27 gene. So this is going to be a pretty science-heavy, boring post. Only those who are mednerds or have personal invested interest (maybe you’re going through something similar?) may want to proceed. If not, you can scroll down to the bottom to see some wicked swollen joints! 😉

Anyways! My rheumatologist keeps mentioning how this is one of the most severe cases he’s seen before, so we have been extra cautious on how I am treating my joints while they are inflamed so that I don’t cause permanent damage/disability. And this is why I wanted to give a play-by-play of how everything manifested to those who may be starting an ArthroJourney of their own. (I found comfort in reading about others’ stories, you might too? I hope so!)

Now typically, arthritis (even a severe initial episode) wouldn’t keep you out of work for more than two weeks, but because I’m an RN in the Operating Room I’m unable to perform nearly every single one of my job duties without running the risk of causing lasting injury or permanent damage to my affected joints. Also, different from other forms of arthritis, Reactive/Psoriatic Arthritis, not only are the bones in the joints inflamed, but Enthesitis also occurs, which is the inflammation of  the sites where the tendons and ligaments enter the bones/joints. So it’s like a one-two punch on my joints!

This next section is overly detailed and can be skipped, however if you have been recently diagnosed yourself, this detailed manifestation could be of use to you.

How it began:

3/10/17-3/14/17 Home sick with some sort of stomach virus.

3/18/17- Less than a week later, said stomach virus triggered my HLA-B27 gene to wake up the reactive/psoriatic arthritis autoimmunity in my body. So the cascade began with me waking up with my right TMJ swollen and painful and left side of my neck hurting. Brushed it off as having “slept on it funny” and grinding my teeth at night.

3/19/17- Woke up with above mentioned areas still hurting, and newly hurting the area just beneath my two smallest toes on my left foot hurting. Before going to bed the area just beneath my right knee began to hurt.

3/20/17- Woke up with my left scapula and upper back hurting, by end of day left wrist and hand began to hurt. At this point I knew something was wrong and was attempting to get in to see my PCP. She had not available times so I went to urgent care- by end of the night I was in the Emergency Room for the first time.

3/21/17-3/26/17 Symptoms continued to progress, at this point nearly all my joints that were to become affected had started hurting in some way. I had been to seen my PCP and we were attempting to control the pain and swelling with NSAIDS. I had not yet been able to make an appointment with a Rheumatologist due to their scheduling conflicts.

By end of day 3/27/17 I was back in the Emergency Room for the second time in 1 week. At this point they FINALLY started me IV corticosteroids to really help alleviate the swelling and pain.

3/29/17- Finally in to see a rheumatologist!! Extremely thorough work-up followed, and I was finally started on oral corticosteroids for maintenance pain/swelling relief so I wouldn’t have to continue going to the ER! Begin: 2 Weeks Prednisone 50mg/day.

By 4/12/17 with my follow-up appointment with my rheumatologist, I had hit a plateau with recovery (as in, I wasn’t getting any better, and I can’t stay on steroids for life,) so we decided I needed to start on Enbrel injections, once weekly. This is a type of Immunosuppressive Therapy that basically tells my immune system (which is attacking my joints as if they are foreign invaders to my body) to chill the fuck out. He also drew up a plan for me to taper my steroid– 25mg Prednisone x5 days, then cut that in half again for 5 days after that. Now it’s just a waiting game in combo with trial and error. Will the Enbrel work? How will the steroid taper go? Will I need to go on Methotrexate after my liver bounces back from the steroids?

4/15/17- By Saturday the swelling is starting to come back pretty bad. My left thumb is showing the worst of it.

4/19/17- Whoopsies! After cutting down my steroid taper in half again (12.5mg), my left foot/ankle BLEW UP that night. (Pictured below) After an urgent call to the midlevel on call, they bumped me back up to 25 mg a day… We have yet to determine when I should try stepping down again… Perhaps after my third dose of Enbrel.

Now, on to which of my joints have been affected.

Now for me, the left side of my body has been much more severely impaired than the right side of my body, but both left and right joints have been affected in every case. Both TMJ jaw joints have been affected, at one point they were so swollen I could not open my mouth past the width of one finger, it was even difficult to eat soup with a spoon at that point. My cervical and thoracic vertebrae including my scapulas have been affected, and this is where I feel the most enthesitis and surrounding muscle spasm. Both points where my clavicles meet my shoulder girdle also bother me. This makes dressing especially fun in the mornings. Luckily neither my shoulder socket itself or elbows have given me any trouble. However, both wrists and all of my knuckles and joints in my fingers have been affected. When it hurts to do everything with your hands, one really realizes how important activities of daily living (ADL’s) really are! Another win is neither my lower back/sacrum nor hips have been affected! But lastly, both knees, ankles, and metatarsophalangeal joints have been affected. It’s with the affected joints in my extremities that I notice the disproportionate amount of pain and inflammation on my left side compared to the right.

Below are some pics, chronologically. Now I don’t have baseline pics, and even though both side of each body part hurt, I haven’t had much swelling on my right side at all, so the pic comparisons still are notable.

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I hope this wasn’t toooooo painful to read, if you read it at all. I promise more fun posts are to come! I just had to get the nitty gritty out of the way. 😉

Cheers!