I actually really enjoy the communication and support I get from my neurologist. We tried other medication‘s, but I had very little success. Staying on prednisone too long is not the best choice for some. As I said, this is the first infusion that I received that I didn’t get the results I was expecting.
Thank you for your words and advice. Happy Thanksgiving.

Michael you didn’t say if you have a neurologist? Mine took me off infusions, I just take.Pyridostigmine & prednisone. I’m doing very well with just those two things. This is my second Neurologist. He doesn’t seem to be a big proponent of infusions so he had me cancel mine. I had only had one round in the hospital, and then one treatment outpatient before I saw him and he had me cancel the other three infusions. So far I’ve been doing fine without them check with your neurologist. I’m very happy with my neurologist office. I call and actually get to talk to a person each time I call, they write my question down and usually within the same day or the next day afternoon I have my answer back , it’s very comforting to have that this crazy disease! Hope anything that I have said able to help you! Wishing you the best!

Hi,
I have been taking this infusion since late June of 2023. I had collapsed in April of 2023 after moving across town. I had 2 collapses in my new apartment in short distances landing on a bar level chair to a sofa. I called 911. I was brought to a new hospital for me. Luckily the hospitalist who saw me knew I needed mor medication than mestinon.

We tried the gold standard ivig. Well for me, I had anaphalaxis we found out. No way to know til experiencing. Most would do fine. I have rare responses and unusual autoimmune (rare) illnesses.

We did try plasmapharesis. It was invasive, but gave me 6 weeks. Then I needed to use prednisone til I could get meningitis vaccines and start on Ultomiris.

It gave me notable relief. But like you, what I experienced was feeling a lot less MG symptoms until week 6 (and sometimes 5). Then my vision would get worse and swallowing, pills especially, would worsen.

I wish the lifetime of the medication were longer. I observed a similar challenge when I was on a lupus infusion.

The important thing for me is how ultomiris works (on C5 complement) vs e.g. IgG. For me, the other that acted on IgG took my IgG critically low and put me in jeopardy of serious infections. Ultomiris is safer and lasts longer in my body. Some weeks of improvement are better than struggling on pills. Further2023-2024 were years when I needed many orthopedic surgeries. I am greatful I had this medication as I went through the surgeries hips, spine, shoulder. This medication was lifesaving for me.

It has been nice to keep my smile that mestinon gave me. It was nice to have a treatment that didn’t jeopardize my immune system (IgG) and left me more confident being around people in the post COVID-19 era.

Thanks for asking for feedback on this medicine, Michael VI. Good luck and let me know if I can answer any other question?