Taking pyridostigmine
After 2 yrs of stroke like symptoms, blurry vision, low o2, intolerance to heat, trouble chewing and swallowing...I have a diagnosis of seronegative MG. A wrong dx of lung fibrosis and ILD led to a second opinion, on the advice of my rheumatologist treating me for lupus. My low o2 is not a lung issue and I do not have fibrosis or ILD....great news! My new pulmonologist suggested we check heart...heart was great! She then suggested perhaps neuromuscular disease like mg. Conveyed I had been tested 2 yrs ago and was negative, she ran a MuSK test which was negative too. She then mentioned seronegative mg and referred to a neurologist which took 4 months to get in "quickly"...I just had my appt on Jan. 15, 2025. I did the 2 min ice test and had a WOW improvement! Finally a dx, and med along with SFemg to be scheduled...(may29).
I started on pyridostigmine 30mg 3 times a day 4 days ago. First and second day the nausea and diarrhea were horrible but yesterday and today nothing really. But what I have noticed is I get almost 2hr block of time after my first dose ( 9am) in which I can do things but after that block of time, I'm exhausted and must sit. My next 2 doses, I get hardly any boost. Will that improve? Today at lunch I could hardly chew and almost choked several times. For supper I just drank a Premier protein drink, as my entire face feels so sluggish. I love the 2 hr of relief and I think today I just pushed too hard...but it's been so long to have that. Tonight my words are slurred and I feel I have stepped backwards.
I read they can do steroids but I have taken so much of those with my lupus my bone scan shows osteopenia. Do you think it's reasonable to call to see if we can up the pyridostigmine? I know 4 days is not much time.
I have went from active to sitting in my chair trying to lift my coffee to my mouth...the second night of being on meds, I finally was able to take care of my showering all by myself.
I am taking 90 MG 3 times a day. I have a mild case of generalized MG, ache positive. Symptoms are minimal but still not normal but acceptable.
achr positive
I've been taking 60mg pyridostigmine 3x per day since June of 2025 when I was diagnosed with MG. Well, except for when I forget to take the mid afternoon tablet. 😀 And when I forget to take it I can tell. My eyes get tired and my eyelids start to droop a bit. As long as I take it 3x a day, I really have no issues with MG symptoms and fortunately, I haven't had any reactions to the medication. I also take Cellcept, 1000mg 2x/day and am weaning off prednisone. I'm down to 3mg/day and expect to be at 0mg by the end of the year. That's the one medication I am seriously looking forward to being done with due to the side effects for me.
I am 72. Diagnosed when COVID hit. Couldn’t even dress myself. Started on pyridostigmine which helped. Went to 60 mg x 4 and put on prednisone at 80 mg x 1! Finally got off that and went on CellCept with reduced pyridostigmine and was doing fair. Finally went on Ultomiris and had a thymectomy. Wow!! That stuff and the surgery made me feel normal! Essentially in remission but still doing Ultomiris. There is hope!
Hi, I suddenly could not swallow food and my eyes were closing like shades over them with blurred visions and I just felt strange. All this happened at one of my best friend's 70th birthday party. Thank God her cousin was a nurse and noticed these things happening to me. My other friend took me to the nearest hospital and they gave medicine that started to help with the breathing problem and finally my eyes got a little better after being there for 5 days. However, they did not know what was causing all this to go wrong. I came home and went to my Primary Care Doctor and when I told him my eyes would not stay open, he knew exactly after doing a blood test it was Myasthenia - Gravis and gave me Pyridotigmine to take 3 times a day. Then sent to Neurologist who knows this disease and he put me on Infusions of Uplizna infusions after talking with me and Prednizone 30 mg three times a day. This was one year and half ago. Now, I'm having joint pain in every joint in my body. My neck, arms, knees and ankles. I do need knee surgery but don't know about all the other pain. My left side of my head at my scalp felt funny for a week or so ago but that is better, but I don't know where to go or to let my neurologist know. Has anyone else had their joints to all hurt. Some tingling in my hands like they are asleep too.
Donnice Smith
