Cross your fingers for me…

I started my new biosimilar infusions to treat my autoimmune arthritis in May 2022. Everyone asked me, “Is it working?” Honestly, it’s hard to tell. I was cautiously optimistic. Slowly, I noticed I could walk my dog for longer periods, walk upstairs to use the bathroom at the end of the day (instead of crawling as per my norm), and was able to stand up in the morning without feeling like my ankles were broken. I saw it as progress and was grateful.

Fast forward 5 weeks and I am 100% sure my drug is working. How do I know? Because it is wearing off and I feel terrible. I’m 5 days out from my next infusion and I am experiencing a huge flare up. Fatigue, crushing pain, and general feelings of malaise. I hurt and feel terrible. The worst part is I am supposed to be taking care of my mom, but barely got out of bed today. I feel worthless and her medications were messed up as a result of me not being awake. Lately, I’ve been doing a lot because I felt good. Now that Inflectra is wearing off, I can barely function. It’s not a good thing to have my medication wear off before my next infusion, but it’s good to know that the drug is working (for the most part.)

I’ve been on 10 biologic drugs over the years. Some did nothing at all for me, while others gave me some pain relief. Kevzara was the first drug in 18 years to provide pain relief and decreased swelling of my joints. It lasted almost 3 years before the effectiveness wore off. It was soul crushing when that medication began to fail. It’s an emotional roller coaster to constantly search for a medication to help improve my quality of life. Until then, I’ll deal with my painful hands and rheumatoid nodules until my next infusion provides me with relief. I’d cross my fingers if I knew it wouldn’t hurt so bad. You can cross them for me if you wouldn’t mind. 🤞

swollen knuckles make every day activities a little more difficult

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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.

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