Getting a handle on MG (or trying)
I have been having fairly frequent flairs, due to stress, summer heat, and just too much exertion. And I have to admit I have gotten a little depressed about that. I have been on a 10 mg daily dose of Prednisone and 10 - 60 mg quick release tablets of Pyridostigmine, spread equally throughout the waking hours. And I still was getting times when I could not shave, or brush my teeth due to twitching and muscle weakness. I was having difficulty lifting my water bottle to my mouth to drink sometimes.
My latest visit with my neurologist. He considers my MG not under good control. He wants to increase my Predinisone, going to 20 mg for a week, then 30, then 40, until I hit 50 by week 4 in an effort to get it under control. His idea is if increasing it works to bring the MG under better control, I should then cut down on the quantity of quick release Pyridostigmine. Managed well enough, and reducing the Pyridostigmine to an almost "as needed" level rather than needing 10 pills per day just to keep the basic symptoms at bay. If I can't get it under control with this method then he says I will likely need to resort to IVIG treatments once a month.
Then if that works, he will then try to reduce the Prednisone down from the new level of 50 mg daily back down as close as we can get to 10 or 20 mg without having to take as many of the quick release Pyridostigmine to cover the symptoms.
I am still in the first week of increasing the Prednisone from 10 to 20 mg. I am thinking it is helping. I am wondering if anyone else has been on a similar treatment plan. Should I wait until I hit the 50 mg dose of Prednisone at week 4 before I start trying to reduce the daily quantity of Pyridostigmine? Or if I am already feeling an improvement can I drop a tablet and see what happens?
It would be lovely not to need 10 pills daily of the Pyridostigmine
opinions/thoughts/experiences?
Have you tried any kind of infusions? Vyvgart is my saving grace, without it I'm pretty much bedridden and need assistance with literally everything including feeding because my arms are too weak to reach my mouth. My heart goes out to you, I sure hope your doctor comes up with a better treatment option for you very soon. Have you also tried the liquid form of Pyridostigmine? That kicks in a lot quicker for me on my flare days.
I am writing for my 87 year-old husband who has gone down from a starting dose of 60 mg of prednisone to 0mg ending the steroid side-effects. Infusions of Ultomiris have been his key helper. Every case seems to need a lot of "tinkering" for finding what helps. 3 years to get some noticeable progress
I had. similar journey. started with 5 mg Prenisone. and a lot of pyridostigmine or mestonin (somehow easier to spell 😀 )
Was not good enough and lots of flairs. Only 1 crisis. So doctor upped the predisone rapidly to 50Mg and tapered the Mestonin down to almost an as needed, but my as needed was around 4 of those pills spread throughout the day.
I styed at 50 mg of prednisone for a month and then they slowly started tapering down again as I had zero crisis and only an occassional flair due to stress or heat or over exertion. But when I tried to go below 35 mg of Predisone the flairs, and symptoms got worse againRight now I was put onto IVIG. I have had 5 treatments and continued the attempt to taper down of Prednisone. At this point in time I am down to 10 mg of Prednisone 4 60 mg tablets per day of Mestonin, and 1 180 mg slow release of Mestonin in the evening to cover the night.
No cirisis at all in the last year. I do get fatigued easily with exertion. Unfortunately this regimen is not a cure, it just keeps the symptoms to a minimum. I still need to avoid prolongued labour, and heat, and certain stress.(work stress that is part of my intellectual job in IT is not a problem but stress I cannot control is like when my mom had a stroke a month ago if felt helpless and had a flair)
I hate to say it but getting my GMG under control took effort. and I had to accept that I can make myself comfortable through management and meds but I will always have to be careful. Gone are the days when I could do what I want whenever I want. I need to accept that long time physical activity will bring on a flair if I do not recognize it and stop the activity to take rest breaks. If I try to push myself through a situation I might make it, but I will burn up what is left in my energy tank and be useless for a while afterward
Good luck. It is a hard journey but it is one you can make it through with help from your loved ones and determination with yourselfand it is important that your doctor must have a plan after going up to 50 mg to stabalize you. You have to go back down as 50 mg pf Prednisone long term will have rather unfortunate consequences. You can't stay at 50 for long term
Prednisone is not good long term at high doses. Read about the long term side effects
