Introduction
Generally speaking, Myasthenia Gravis (MG) can be well managed with the right medication. Flare-ups do happen – often without warning or clear cause; but in my experience, they tend to occur when reducing medications.
MG treatment involves a careful balance of several drugs, as some may interact with others. Below, I outline the main medications I’ve used, along with my personal experiences.
Disclaimer: This is based on my personal experience and should not be considered medical advice!
IVIG (Intravenous Immunoglobulin)
What It Does
IVIG is a blood plasma treatment used to ‘shock’ the immune system and quickly reduce MG symptoms.
How It’s Administered
IVIG is administered intravenously, typically in a hospital under nurse supervision. In my case, it is usually delivered over two mornings. The infusion starts slowly to monitor for allergic reactions, then speeds up if all is well. Dosage is based on weight and will require multiple bottles.
My Experience
Day 1 of IVIG lasted about 6 hours, Day 2 about 4 hours. I was drowsy during treatment, likely due to Piriton given preventatively. I continued to feel sleepy for 2–3 days afterwards.
Results
On Day 4, I’d wake up feeling amazing – energized, productive, and focused. This boost lasts a few days before tapering off. Sadly, the ‘Day 4 high’ doesn’t last forever!
Prednisone (Steroids)
What It Does
Prednisone is a steroid that suppresses the immune system.
How It’s Administered
Taken orally in the morning, typically with food; I’ve taken up to 60mg/day. Tapering down is slow – about 5mg per month – so coming off 60mg could take over a year, as once you are down to 20mg, it’s tapered down 1mg per month.
Side Effects
There are many documented side effects, however, personally I’ve noticed weight gain, poor sleep and hunger.
My Experience
I gained about 30lbs, and my sleep became very interrupted. On the plus side, it worked very quickly to control my MG symptoms.
Azathioprine
What It Does
Azathioprine is a long-term immune suppressant, intended to eventually replace steroids. However, it can take up to 6 months to become effective.
How It’s Administered
Taken as 50mg tablets in the morning with breakfast, I currently take 250mg (5 tablets).
Side Effects
Potential kidney effects mean regular blood tests are needed. I experienced extreme fatigue during dose increases, and briefly felt nauseous when initially starting the medication. It also makes your wee fluorescent green!
My Experience
It allowed me to reduce my steroid dosage, which is a win! The fatigue during increases was intense but temporary – and I am hoping my kidneys hold out!
Pyridostigmine
What It Does
Pyridostigmine inhibits acetylcholinesterase, boosting acetylcholine and improving muscle strength. Its effects last about 4 hours.
How It’s Administered
It comes as 60mg tablets (although depending on my dose, I half them), which I take every 4–6 hours. I set alarms to stay on schedule. My typical times are 08:00, 14:00, 18:00, and 22:00.
Side Effects
Minimal, though it can increase bathroom visits.
My Experience
As I explain on the my story page, this drug worked almost immediately with my severe symptoms, when I was given it – within an hour my symptoms improved. Now I am consuming lots of it, I don’t really notice if I go over the 4-hour mark (there is no effect); but this is also possibly due to combination of this, Prednisolone and Azathioprine.
Supporting Medications
To manage side effects from the main medications, I also take:
Lansoprazole – once daily to protect the stomach from steroids
Adcal – twice daily (08:00 and 18:00) for calcium and vitamin D
Alendronic Acid – once weekly to protect bone health
These are mainly to offset the longer-term effects of steroids, including providing a linking to the stomach and also bone corrosion.
Final Thoughts
Managing MG involves juggling multiple medications. Prednisone, while not ideal due to side effects, is fast and effective. My medium-term goal is to fully transition to Azathioprine and reduce steroid reliance – but time will tell! My long-term goal is, of course, to come off medication altogether!
I have also done recorded a video, which I go into some more detail, which you can view here: