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.
Kelly - I would ask your doctor if Mycophenolate is appropriate for you.
My story: I had sudden onset MG beginning in August 2024. We believe it may have been triggered by a mosquito bite possibly West Nile infected. Developed no WNV symptoms but by the end of the month was hospitalized due to sudden loss of arm strength and also presenting diplopia, ptosis, speech and swallowing issues. I went from an MG-ADL of 5 on admission to 19 at discharge after going through the diagnostic wringer. Once the hospital figured it out by calling in a Neuro consult and visiting that clinic I initially began taking both Prednisone and Pyridostigmine Bromide. I saw immediate improvement.
About 30 days later, October 2024, we began Mycophenolate and up-titrating it eventually to 2g/day. Fortunately I had no bad side-effects from any of the meds - including Mycophenolate - that prevented me from taking them. By early 2025 my baseline MG-ADL was "2." By March I began down-titrating Pyridostigmine to a full stop. In April 2025 I began down-titrating Prednisone from 30 mg/day and remained at a supra-physiological level (>5mg) until May 2026. I'm currently at 4mg and based on the complete lack of flares can taper to zero. Mycophenolate will be my maintenance drug. Fortunately for me the disease was caught before neuro-receptor damage.
I would encourage anyone taking Pyridostigmine and Prednisone to be aware of their side effects and not confuse them with MG. The Bromide salt in Pyridostigmine bio-accumulates. The active ingredient Pyrdiostigmine has a short hours-long half life: The half-life of the salt is weeks. In mild cases the Bromide can cause leg muscle stiffness, weakness and joint pain which is easily confused with MG, sarcopenia and arthritis. In extreme cases it can cause Bromism. Most MDs are unaware of this.
What Prednisone gives it also takes away also causing lower-body symptoms similar to Pyridostigmine. They are the devil's tic-tacs. The other side effects of Prednisone - there are many - are well-documented. At 4 mg/day my weight has returned to normal. When tapering Prednisone from a supra physiological dose the HPA-axis will oscillate. You will have good days and bad days and those days should not be confused with MG flares or MG fatigue. I feel really bad for the people who take both Pyrid-O and Prednisone, feel badly, think it's an MG flare and up-titrate to compensate. It may be an MG flare but it might not be. Learn to read your body. After the first 10 mg or so your HPA-axis is almost fully-suppressed. Below 10 mg - assuming that one doesn't become Adrenal insufficient - endogenous cortisol production wakes up. If you are asked to taper Prednisone ask your doctor if you can keep the down-titration steps to about 10%. I made the mistake of tapering from 15 mg/day to 10 mg/day and it was tough. 5 to 4 is another hard one: I went from 5 to 4.5 with 28 day holds. If you have the option to taper do it slowly, read your body, and try to isolate what you think might be an MG flare or fatigue from Prednisone withdrawal.
Other than the lower body side-effects from the meds, which are improving, I don't feel like someone who has MG. I am one of the lucky ones. Ask your doctor to consider Mycophenolate: You may be one of the lucky ones too.Kelly, I am in the same boat, new OMG for now with Mestinon, and Prednisone which I haven’t started to take yet as I want to learn more about this. So did you take Prednisone? How is the experience so far? Is Mestinon controlling your symptoms alright? I am reading a lot and not sure what to do yet.
Kelly, I started with mestinon as soon as my blood test indicated the MG. I never used the steroids. Soon after, my neurologist recommended Vyvgart. That was a disaster for me. It caused other negative issues. I stopped that immediately and tried the IVIG protocol for a few months. It was somewhat helpful, but the real benefit began for me when I switched to Ultimiris. That made me feel better just a few weeks after I started the program. I had more energy, no ocular issues, didn't choke as much and generally felt better. I've been on it for 2 years (an infusion every 8 weeks). Sometimes, I feel like it isn't working as well as it did in the beginning. I guess its like any other drug. It becomes like an addiction. You require more to get the same affect. I'm going to visit the neurologist and see what he thinks (like any of them really care).
Kelly, I started with mestinon as soon as my blood test indicated the MG. I never used the steroids. Soon after, my neurologist recommended Vyvgart. That was a disaster. That caused other negative issues. I stopped that immediately and tried the IVIG protocol for a few months. It was somewhat helpful, but the real benefit began when I switched to Ultimiris. That made me feel better just a few weeks after I started the program. I had more energy, no ocular issues, didn't choke as much and generally felt better. I've been on it for 2 years (an infusion every 8 weeks). Sometimes, I feel like it isn't working as well as it did in the beginning. I guess its like any other drug. It becomes like an addiction. You require more to get the same affect. I'm going to visit the neurologist and see what he thinks (like any of them rally care).
