@stonewheel
Hello! Four years ago, my ON started with a sudden onset headache, which I didn’t think was a headache, as it was a searing pain at the crown of the back of my head. It came on while is was brushing my teeth around midnight. It felt like someone had pulled my scalp off and put it back on. It felt like what a bad abrasion feels like, when you touch it…but to the 100th power. I took 2 Tylenol and went to bed. It helped a bit, but it progressed the next day to spread down behind my right ear and into my neck. Over time the ability to sleep on my back or right side was impossible, as it was so tender in that area.
Within a week of the ON onset, which was not year diagnosed, and I had been put on various pain killers for the pain….my Polymayalgia Rheumatica started. I work out a lot, so at first I thought I’d overdone a workout, but the PMR quickly spread up the back of my legs and up,to my shoulders. Finally I was put on Gabapentin, which was a life saver! Within 24 hours, my ON was so much better! I had the ultrasound to rule out GCA, and made an appointment to see a Neurologist who specializes in headaches. After a 3 month wait, I was seen and diagnosed with ON. The Gabapentin was kept at bay, while I waited to be seen.
The PMR was raging during this time and I finally got in to see a Rheumatologist who after a lot of tests, diagnosed me with PMR, I had no idea that PMR and ON can go hand in hand. I’ve been on steroids for 4 years and unable to taper below 4mg, without being in extreme pain, my PMR spread into my clavicle, which is only seen in 5% of all PMR cases…lucky me!
Since I also have Osteoporosis, my Rheumatologist wants me off my prednisone, so I’m currently on Kevzara injections every 2 weeks. Shortly after m fist injection, my ON began creeping back in. I have yet to begin my steroid taper, as I need to,wait til the Kevzara has been in my system for 2-3 months…so this ON flare isn’t related to any taper. It can only be the Kevzara. Kevzara has information stating it can exacerbate symptoms in some people of their other underlying auto immune diseases.
I have a video chat soon with my Rheumatologist, about my continued use of Kevzara, as she message me about possible other options.
I’m currently using my Gabapentin to help with my ON and hopefully it will help. So far it isn’t working much. I do believe Kevzara is the reason and I can’t imagine what it will be like, when I start my prednisone taper in August.
I hope you feel better soon! Please keep me posted.🦋