Navigating Myasthenia Gravis: Medication Changes, Severe Hypersensitivity, and Advocating for Myself

My journey with myasthenia gravis (MG) started almost 2 years ago with double vision. I'm 68 now.

My doctor first prescribed Mestinon, however, after just 4 days, I developed very itchy pins and needles and extreme anxiety too. My doctor advised me to stop that medication right away.

Medication Adjustments

After stopping Mestinon, my doctor started me on mycophenolate 500 mg twice daily and 25 mg of prednisone. Over time, I got puffy all over and gained weight.

About eight months ago, I started Vyvgart infusions, receiving one infusion weekly for four weeks,  followed by four weeks off. I wasn't happy with my infusion care team, so I transitioned to self-injections, keeping the same schedule of four weeks on and four weeks off.

My mycophenolate was doubled to 1000 mg twice daily, and I was tapered off prednisone slowly and stopped at that time. I started to have hypersensitivity, like pins and needles all over my body, similar to when I was on the Mestinon. So, we doubled my mycophenolate, went from infusion Vyvgart to self-injection Vyvgart, and stopped prednisone.

A severe flare-up and painful skin hypersensitivity

I ended up with a huge flare-up: hypersensitive and painful, no rash, but wearing clothes hurt kinda pain. My doctor started me back on 5 mg of prednisone, along with 1000 mg of mycophenolate twice daily and Vyvgart self-injections once weekly for 4 weeks, and then 4 weeks off.

I’m still having pins and needles, a burning sensation, and weakness in my muscles. It’s my month on self-injections tomorrow, the second round of 4 weeks on. Prednisone masks many things, including the pins and needles and hypersensitivity, but it only came to a full-on crisis after prednisone stopped. So I’m thinking I’ve been allergic to one of the other 2 meds.

It’s not up to me but my doctor to figure this out, and he said I’d rather have you on prednisone, even if it’s masking symptoms, rather then you go through that ordeal of severe hypersensitive skin with pain and choking and muscle weakness for now.

Living with Overlapping Health Conditions: MG, Fibromyalgia, and PTSD

This is scary and I’m not handling this well, as I think prednisone may have to be increased again, so here goes puffy skin all over and weight gain. What can I do to advocate for myself?

I don’t see my doctor for another 3 months. I hope the Vyvgart self-injections help after tomorrow, when I start up on them again. I’m retired, and I don’t know how others manage working. I can barely get my dishes done without stopping 4-5 times to finish. I live alone and have very little family support, as it’s not recognized. I also have fibromyalgia and chronic soft tissue damage from many injuries over the last 23 years, and PTSD is really bad too.

I love to garden when I can and go see concerts throughout the winter when I’m well, using my new walker. I’m curious if anyone else has experienced hypersensitivity?

Let me know in the comments!

Thanks Anna