• Community Member

    Member

    I’ve had generalized MG since 2007. During my “loading dose” over several days, I had fierce headaches and body pains, like an unimaginably bad flu —Tylenol took off the edge just a bit. Subsequently, the doses have been lower over 1 or 2 days, and I still do get headaches and feel out of it for a day or two, but the difference in my ability to move, breathe and function with stamina make it worth it. During Covid, there was a pause in my treatment, and because of the gap, I had to do another “loading dose” with the same intensity and terrible flu-like symptoms, and headache, but again settled into just Tylenol for the headaches. I hope you are able to tolerate the treatment and have good results — this treatment has been a life-changer for me, and am immensely grateful. Summer heat is rough, but not as rough as it was before IVIG, when I would lose my ability to walk entirely. The dose lasts 4-5 weeks for me — all patients are different — the “Snowflake Disease” — as I imagine is response to treatment. Hoping you find the right medication and combination to treat your symptoms, hang in there — you can do it.