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've had a diagnosis of myasthenia gravis since 1995. I spent 5 days/week having plasmapheresis in an attempt to gain strength and decrease symptoms. I had light sensitivity, hearing sensitivity, touch sensitivity, double vision, slurring of speech, and choking episodes. For 8 months I did this, until my neurologist said that he felt I needed my thymus gland out. I was on mestinon 60 mgs. 4 times a day and prednisone up to 60 milligrams a day. I blew up like a beached whale! When I finally had my thymus gland removed by the thoracic surgeon, I was given the wrong blood type in ICU and was coded.
I am an RN and an administrator, I have worked ICU, CCU, Burn Units, ERs, and general Med/surg. Nothing prepared me for what happened next. I actually had my own out of body experience! The whole story can be found in my book called "No More Fear" by Karen T. Stratoti. Today, at the age of 72, I am on 30 mgs. of Mestinon twice a day and rarely have any crises episodes. Its been a real struggle for my family. I speak to many others who are going through this. They are quite surprised that I have come so far. You have to understand that you need to keep faith and hope daily. Once any crises situation gets under control, you can go into a state whereby you once again feel like yourself. But you must always remember that it is one step in front of the other. Rest when you can. When I teach or speak publicly, I always take a Mestinon in advance because of any stress I may feel. I was 42 when it was discovered; I have lived with this for 30 years.I've been diagnosed with MG in February 2005 of which when my doctor at Mayo clinic in Rochester (she was most definitely my superhero) knew about my condition before I even opened my mouth, and it's been a very slow process since then until 2019. I've been taking pyridostigmine bromide from the beginning, but since 2019 I've been taking 60mg four times a day, and 180mg timespan at bedtime. Here's my regimen....starting at 7:00AM which is when I get up in the morning, I take a 60mg pyridostigmine bromide tablet, four hours later, at 11:00AM I take another 60mg, then four hours later at 3:00PM 60mg, then four hours later at 7:00PM my final 60mg to end the day. At 11:00PM I take the 180mg pyridostigmine bromide timed release at bedtime. I sleep like a baby every night as well. Wake up the next morning at 7:00AM start again. I must caution y'all though,take with food, or you'll have stomach upset and other issues. I've at times haven't, and suffered an hour or two later.Taking with food though minimizes stomach issues. Hopefully y'all find this helpful and lots of prayer as well too. God bless y'all and Happy New Year.
Your story sounds much like mine, facial drooping, struggling with heat, fatigue, slurring speech, blurred vision, my wife had me into the ER on several occasions thinking I was having a stroke but the ER Dr. couldn’t come up with any answers.
I struggled with the symptoms for 19 years through 7 different neurologists (including 2 at the famous Mayo Clinic in Scottsdale Az.) I was tested for myasthenia several times but never had the antibodies in my blood, I was misdiagnosed multiple times and became quite disappointed in the medical community until I read a article in a group chat that said “You have to be your own advocate “
At one time a neurologist had me taking 60 mg. Of prednisone a day for 3 years, it controlled my symptoms but gave me diabetes, glaucoma and made my skin so thin that I would bleed by brushing up against a wall or a door, I still have scars on my arms from the skin being peeled back from simple bumps.
Most recently (with in the last year) I have been diagnosed with seronegative myasthenia, my doctor gave me a prescription for Pyridostigmine , I took it for a little over a month and in that time I never had a single myasthenia episode which was wonderful, however it gave me extremely bad diarrhea and constant stomach cramps, so I decided to stop taking it. Right now I’m am back on prednisone 50 mg. but my doctor has me take one tablet in the morning for 3 days then discontinue taking it for two to three weeks before I take it again.
Luckily my symptoms come randomly and are not consistent when I have an episode it last for an hour or two or it can last for 3 days.
My bottom line is; read everything you can and “don’t be afraid to be your own advocate “I've been taking Pyridostigmine for 6 months now (540mg ER in the AM and 60mg BR late afternoon) and it helped greatly with my double vision. But it still broke through so I take prednisone too. My experiences with Pyridostigmine is that I do get strong stomach cramps so I make sure I have breakfast, lunch and dinner and a snack which helps with them. It does cause flatulence and gas x helps that while I really haven't had much in the way of diarrhea episodes with it. So far everything is going well but I have experienced swallowing problems and none of these meds have eliminated that. It sounds like Pyridostigmine does help your MG symptoms and I guess you'll have to choose, its side effects, or the effects of MG.
I take 3 60mg a day and can take a 4th if I need. Plus I take cellcept and prednisone but the most help comes from a new shot Vyvgart Trulio.
