My Seronegative MG Treatment Update

I've been living with myasthenia gravis for 6 years, and I've had to learn how to navigate a lot. Every day is a new adventure, especially since I have 22 other health conditions that I have been fighting alongside my MG. Some have been ongoing while others shorter-term, yet life-threatening. My MG symptoms wildly swing depending on what my other conditions are doing that day.

IVIG treatment confusion

I have been getting IVIG treatments fairly regular for the last 3-4 years. I say fairly regularly because there was some mix up with my insurance company and my Medicare. No one could figure out who was supposed to be paying for my treatments.

The primary insurance IVIG provider company was charging me for treatments that I didn’t actually receive. Because of the confusion, I had to discontinue the IVIG treatments for about 4 months at the end of 2025.

I am so thankful for my neurologist's assistant. She worked hard and got me approved to restart the IVIG treatments in January 2026. Currently the IVIG helps not only my MG, but at least 4 other conditions I have.

Moving in the right direction

Despite the stress of the last few months, I am down to taking half pills of a Mestinon every three hours, instead of two pills of Mestinon every three hours, which has been my dose for the last 6 years.

Even though I wasn't able to receive my IVIG treatments for a while, I was having times where I was only needing between 1.5 pills to 1 pill of Mestinon, and not always the full dose.

Diarrhea is the worst side effect from taking the Mestinon at that dose, for me. But the Mestinon helps me move. I have to choose between being able to move and having diarrhea. What a fun choice to make!

Shifting medications

When I was first diagnosed, I had to take a higher dosage of my meds. This was 2 years prior to beginning IVIG treatments. I was also taking 30 milligrams of Prednisone daily. That has now dropped down to 2 milligrams every other day.

I'm hoping in the next month or so that will drop down to 1 milligram. My neurologist is dropping me down slowly, because I've been on Prednisone so long, and it can really mess up your body, especially if you go off of it too quickly. The long-term use of Prednisone actually can some of my other conditions worse. So I've really had to be careful.

My newfound freedom

My mom said to me not too long ago: "That would be horrible to have to take a pill every three hours just to be able to move." And you know what? It is. I have to set alarms and all sorts of things to remind myself.

Luckily, I'm having much less diarrhea because of lowering the dosage. And that's especially helpful because I have a permanent colostomy. That's from having to take CellCept for my MG. I'm hoping at some point I can get taken off this medication and get everything hooked back up the way it should be, without the colostomy bag.

And my energy level has been the best it's been in years. Although when I'm due for my Mestinon, I notice my symptoms flooding back very quickly.