How I Can Tell If My MG Medication is Working

My neurologist said some medications take approximately six or eight weeks to truly get into your system and start working. However, with certain medications, you can almost notice immediate relief. For instance, Ibuprofen or Acetaminophen, you almost immediately notice a change in headache, pain, fevers, etc.

When looking into drugs that strictly deal with myasthenia gravis, most people obviously want to feel immediate relief, though that's not always possible. Also, staying on top of any issues and reporting them ASAP is much easier to fix then trying to dig out of a side-effect “hole."

Fatigue and weakness are my main symptoms

For me, to know that a drug for MG is working the first thing I notice is my energy level. I want to know that my overall fatigue is much less than before. The next thing that I am looking into is my arm weakness, as my arms are the absolute first thing to take a major hit. I struggle to brush my hair, my teeth, or even just hold my hands above my head. When a drug is working, I will know because I can brush my hair with none, or very few rest periods.

I always reach out to my neurologist if I have concerns

Keeping in tune with my body is the key to knowing if a medication regimen is working for me or not. I was able to tell when an infusion therapy was no longer benefiting me, and I was able to reach out to my neurologist, and she switched me to something else. I had declining symptoms and even had new ones I had never experienced. Once my infusion therapy was changed, I immediately felt better and the new symptoms I was experiencing were no longer there!

Keeping track of symptoms

A lot of people do rely daily on the MG-ADL score, however, I cannot accurately do so because I live with other conditions (such as thyroid eye disease, so my double vision and droopy eyelids are constant no matter what).

However, the MG-ADL is a blessing for most people. If you are starting a new treatment and want to keep up with any improvements or anything, I would recommend keeping a daily journal utilizing the MG-ADL score. Then if you notice any changes that may be detrimental you can relay the information to your neurologist.

Tuning in with your body

With all this being said, knowing your body and its limits are key. You have to be able to decipher whether your medication is working properly or if it is slowly causing a plateau. If you’re staying steady with your symptom control or having improving symptoms it is a sign that your medication is properly working (of course everyone is different, so be sure to speak with your doctor if you have any concerns).

But once you feel that decline or even new symptoms it’s safe to say your medication may no longer be working or the right one for you. In that case, you need to reach out to your neurologist and let them know that you’re experiencing new symptoms or you’re feeling a decline. That way your neurologist can decide what could need to change. It is better to let them know sooner than later to avoid any serious flares or a potential crisis.