First Confirmed Flare

Hi Everyone,

I was having a lot of SS symptoms in the last week or two, despite being on Plaquenil. My TMJ was worse than it’s been in a while, including having a tongue spasm (my rheumy assured me that she doesn’t think this is neurological, but rooted in my TMJ bc of the Sjogrens-arthritis connection and the fact that it happened mid-yawn). I had awful headache symptoms, general muscle aching, felt like sand was in my eyes, felt thirsty all the time, and oh so tired. I napped more than I have napped my whole life in the last few weeks.

My bloodwork showed definite inflammation. My Dr sent in a prescrip for a steroid taper over a few days, and I am going to start it tomorrow.

I guess I am reaching out because I feel really vulnerable. Today, my disease started feeling real. I have been anxious about it before, but it was a hard realization that there are triggers that may cause flares even with medication.

I feel lucky to have access to such a wonderful and responsive doctor. I know I am ok. She did indicate that she saw some signs of relapsing polychrondritis. I am going to be talking more with her at our next appointment in 6 weeks. Anyway, I am just reaching out to see what you all do when you have moments of vulnerability.

The last few weeks was definitely a reminder that I am not in the driver’s seat with this condition.

This is where steroids can be really helpful. The taper can help get things quieted down fast.

I generally feel like things are going along okay enough but it sometimes hits me. I’ll be overwhelmingly fatigued, disease not under control, etc. Sometimes I have a bit of a pity party but can usually get my act together again fairly fast. I have another autoimmune disease as well, so it’s challenging.

I think my biggest realization was that I am not in the driver’s seat all the time anymore, sometimes the disease is. I appreciate it your advice, steroids beginning tomorrow.

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The steroids should help you feel like you’re large and in charge again.

Hope the steroids damp things down quickly, and that you feel better soon. Thinking of you…:sunflower: