Medication & Treatment Side Effects

I was diagnosed with MG about 3 years ago. Although I am sure it was present long before being discovered. I was started on Mestinon, prednisone and Tacrolimus , I improved minimally, if at all but had to stop all three because of intolerable side effects. Currently I receive infusions of Ultomiris every 8 weeks. I revcently was given Amatadine . I stopped it because it was to constipating.

Breathing issues, swallowing, chewing, talking and muscle weakness! Side effects: cramping, excess saliva, thin skin, bruising and some vision issues.
Other than that I’m very healthy 😊

My doctor put me on Imuran. Results were stomach upset. Gotta remember to eat something 1st!

I have reduced my Prednisone from 10 mg daily to 10 mg one day then 2.5 mg the next. I did have a flare up problem but I doubt that it is related. I told my physician that I was pursuing weight loss goals and due to other side effects I wanted to reduce my Prednisone intake as much as possible. I am obese. I began my weight loss journey about 7 months ago at 325 lbs and I am down to 276 so it has helped in that respect. On a side note, I can tell a 10 mg prednisone day from a 2.5 mg prednisone day by how hungry I am that day! Currently, I just messaged my Neurologist last Wednesday about switching from 60 mg Pyridostigmine Bromide 3 x day to one Pyridostigmine BR 180mg extended release. She must be on vacation because I have received no response and calls go to voicemail. Pyridostigmine BR causes two side effects that cause me problems, increased bowel movements and increased urination. Wikipedia tells me that Mestinon is prescribed for Myasthenia Gravis AND for underactive bladder. I also take a diuretic for water retention issues which doesn't help with urinary incontinence. When I have to pee I have to go RIGHT NOW! With my job, I normally leave the house in the morning to go to a customer's location. This drive can be as close as 15 minutes away and as far away as 6+hours. Holding your bladder in the middle of Interstate 90 when there is a 30 minute drive to the next gas station or rest stop is pure torture. Twice I have peed myself so bad I couldn't stop either. I had no choice but to sit there and let it go. It is like having a strong cramp. I can feel my bladder muscles start to contract and there is just no stopping it. I now wear a pee pad and keep a folded bath towel to sit on while I drive. I cannot express how awful it is when the bladder contractions start and you are helpless to stop peeing. Make me feel like an infant. I keep myself dehydrated during the day to keep from peeing myself. That isn't healthy I know but I am doing everything I can to keep this wreck of a body working and bringing home a paycheck. I don't eat at regular times so taking Mestinon means waiting until I can eat. I am working and driving and my day ends when I have fixed their equipment or I call it a day because it is getting late. To make a long story short, a more even dosing should help reduce the worst of my symptoms and I will go to war for the ER tablets if I ever hear from Neurologist again.