Two years ago today . . .

Two ways to turn your world upside down: July 3, 2020 (UNM Hospital) vs July 3, 2022
(at home, still trying to stick a handstand in the middle of the room)

On July 3, 2020, I was checking into UNM Hospital in Albuquerque for five days of treatment with intravenous immunoglobulin. I had just gotten a diagnosis of immune mediated necrotizing myopathy a few days earlier. 

My primary symptoms were an increasing weakening of muscles all over.  This had been showing up in new & surprising ways each day across several weeks:

• I had difficulty walking. I was using ski poles to try to hold myself up.
• I felt like my head was a bowling ball and that I was going to fall forward from the weight of it. 
• Reaching out to turn the water on in the kitchen sink would mean falling into the sink if I wasn't careful. 
• A pitcher of water was too heavy to lift from the bottom shelf of the refrigerator. 
• Couldn't pull clothes on over my head or fasten a bra at my back.
• It was hard to swallow; I had to think about it.
• Coughing became more like sighing (which, combined with difficulty swallowing, was scary)
• I couldn't lift my head while lying face down on my stomach.

Two years later I'm essentially back to normal. I'm still taking methotrexate — and still trying to follow an anti-inflammatory diet — but my muscles are back, and I can go several days at a time without even remembering that I have this disease.

THE SHORT & SWEET UPDATE:

I'm doing great. 😊

THE GRITTY DETAILS UPDATE:

Rituximab. I'll get my fourth series of Rituximab infusions July 12 and 26. This may be my last round, or we might go for a half-dose in December, per the rheumatologist. Let's watch and see what happens!

Rituximab is “a chimeric monoclonal antibody used to treat autoimmune diseases.” Given by slow injection into a vein in a hospital setting with two doses within two weeks. I've gotten these every 6-8 months since August 2020. 

Methotrexate. Still on it, 20mg per week. This drug decreases activity of the immune system. It keeps cells from dividing by blocking some of the actions of the vitamin folic acid in the body (folic acid is required to help cells divide and replicate). When the immune system is overactive, those cells tend to be the fastest growing and are (ideally) handily knocked out by this drug.

COVID-19 Vaccinations. I got all vaccinated and boosted last year, then learned that Rituximab doesn't play nice with COVID vax. Luckily, there's a solution for that — monoclonal antibodies (aka, EVUSHELD) and I'm happy to report that I was able to get in line and got antibodied.