Treatment approaches
I'm pretty new to MG, after being diagnosed in February. I've been reading the experiences of others and it seems like most folks get up to their full dose of pyrigdostigmine and then are tritrated up on prednisone until they reach a level where all the symptoms stop. Then, they seek an immune suppression therapy that allows them to ease away from the prednisone. Does that pattern match what you have experienced? My neurologist seems to be ready to stop ratcheting up with a relatively low dose of prednesone (still symptoms of drooping eye lid) and rush on to IVIG, which seems pretty intense for this early stage (OMG only, so far). I'd be interested if you've had a similar trajectory or if there are usually other interim steps.
That's pretty much it, Kelly. Most myasthenic crises happen within the first couple years, so step one is always an attempt to stabilize the symptoms. And, if you are lucky, that can usually be done with pyridostigmine and some prednisone. That doesn't mean all your symptoms will go away. That probably will never happen. But your symptoms will be milder and more predictable. For me, pyridostigmine was a wonder drug. It opened and corrected my vision, put strength back into my neck and allowed me to chew and swallow normally. But pyridostigmine does nothing to address your underling issue, which is the production of a destructive antibody.
So, step two is to find a med that will reduce the production of the antibody. That is critical because your antibody - AChR Binding antibody in my case - is not just destroying your messenger cells but is destroying the little receptors on your muscles. Losing those receptors is permanent and progressive. There are a lot of new meds in development which might target just the antibody, but right now the standard treatment is an immunosuppressant which impedes production of all antibodies, not just the bad one. It's an imperfect solution, but it's what we have.
IVIG treatments are somewhat unusual but understandable if your doctor is (A) unsatisfied with the symptom control you are getting or (B) is moving you to an immunosuppressant and wants some interim control of your symptoms during the many months it can take for immunosuppressant to begin working.
Once the immunosuppressant is working, you can usually stop or dramatically reduce your intake of pyridostigmine and prednisone. Good luck Kelly. Keep reading and researching..Thank you for posting your question! I hope some of our members can share their personal experiences with you.
Have you spoken any further with your doctor about the timeframe to start IVIG?
Warmly, Chelley (Team Member)
