It has been a solid 18.5 weeks since Emma's last injection of immune suppressing medication to keep her body from attacking her joints. Alas, this round of unmedicated remission is over. It's not our longest stretch off meds, but it's the second longest!
Unfortunately, her jaw started showing signs of arthritis again, as it did back in the Fall of 2017. It started as an occasional discomfort, but for the past few weeks she has been complaining of pain almost every morning while chewing her breakfast. At the end of March, her pain lasted all day, and in the evening she told me that her jaw felt stiff, like she wasn't able to open her mouth as wide as usual. I busted out a ruler, and sure enough, she has lost an entire centimeter of "maximum interincisal opening" since her last doctor's visit two months ago. Well, crap.
Prior to the Covid-19 pandemic, the plan was to repeat an MRI if she started experiencing arthritis symptoms in her jaw, but I'm not keen on the idea of taking her into a hospital for imaging right now. Her pediatric rheumatologist agreed with me because she is a sensible lady. We also usually have Emma’s blood drawn for labs at the start of a flare, but we aren’t doing that right now either. We'll continue with our shelter in place, thank you very much.
Emma opted to try starting with NSAIDs, so she began taking ibuprofen twice daily eight days ago. It has done a great job eliminating her pain, but did nothing for the stiffness or range of motion in her jaw. As a result, Emma, her doctor, and I made the decision to restart Enbrel today. Okay, actually *I* made the decision to restart as soon as possible. Em would prefer to wait until the weekend because she is a creature of habit and is accustomed to Sundays being our shot day... Even though every day is like a weekend right now, so I’m not sure why it matters.
*** If you are lost, here’s a quick summary: Emma has an autoimmune disease called Polyarticular (multiple joints affected) Juvenile (happens to kids) Idiopathic (no one knows what causes it) Arthritis (inflammation of joints) and has had it since she was a toddler. In her case, it is well managed with an injectable medication called Enbrel (etanercept). We get to wean her off of that medication each time her arthritis goes into remission. This is the end of her fourth remission and the beginning of her fifth round of treatment. You can read more about JIA at the ARTHRITIS FOUNDATION’S WEBSITE. You might also read through our timeline on this journey to the right of this entry (on the web version) . →→→→→ ***
I will confess, I’m not super excited about restarting my child on her immune suppressing medication in the middle of a global pandemic, but I don’t want to risk permanent damage to her jaw joints. So, here we go. First injection of Round #5 was giving today.
Fingers crossed her wonder drug works fast and well, and that we all stay healthy!!!!
|Cookies make injections better.|
***If you are financially able, I would love if you could donate to Emma’s fundraiser for this year’s Virtual Walk to Cure Arthritis. It is put on by the Arthritis Foundation, a non-profit that has many programs for adults and kids to learn more about their arthritis and meet people with similar diseases. My connections with other families of kids with autoimmune arthritis have been invaluable to me, and the friendships Emma has made with other JA kids are very meaningful.
In addition to bringing people together, the Arthritis Foundation fights for patient rights and goes to bat for patients politically. That feels really important to me right now, when the leader of our nation is talking up a medication, hydroxychloroquine (also known as Plaquenil), as a potential treatment for Covid-19 despite the lack of scientific data to back such claims. You know what hydroxychloroquine has been medically proven to be useful for treating (in addition to Malaria)??? The symptoms of Rheumatoid Arthritis and Lupus! Some people who rely on this medication to manage their autoimmune diseases are unable to fill their prescriptions because of the current situation, companies's tendencies to hoard and drive up prices, and the advice of non-medical professionals. That is not okay and makes me cranky inside.
You can donate to support Emma’s efforts on her Walk to Cure Arthritis page, or you can donate to the exact same fundraiser through Emma’s Facebook Walk To Arthritis Cure Donation page (which is super easy if you’ve ever participated in a Facebook fundraiser before.) Any amount helps and we appreciate your support. PLEASE FEEL FREE TO SHARE THESE LINKS! If you would like to register for our team for the virtual walk, let me know! I'll send you the link to that!
Keep washing those hands, my friends. Please, stay at home. Also, stay away from me for Emma’s sake!!!