Working Full-Time
I was diagnosed in November so I am virtually new. I'm on 5mg of prednisolone and pyridostigmine 90mg 4 times a day I get days when I think I've got no symptoms then I get days where I'm fatigued, especially in my arms. They just don't want to go up but after a few hours I'm OK. I'm managing but sometimes it's difficult with having a full-time job but I've just got to keep going and try and keep it at bay as much as possible.
Hey! Sending you much compassion as you begin navigating MG. Have you and your doctor discussed any other treatment options? Do you know what type of MG you have?
- Jodi, Team Memberyou see like I said it's new to me but I'm in England and I do what's best for me I can't and won't give in to it like I'm reading on these sights it maybe I have to sign out because my neurosurgeon says there's a lot of negative information on here That's great that everything is tolerable! I definitely would side that medications can have severe side effects, often more bothersome than weakness limitations, so best to add treatments and increase doses when things worsen rapidly or to where you can't manage.
- Jodi, Team Member
I was diagnosed in February and currently I am on Mestinon 60mg 3x daily and 10mg prednisone daily. I am 61 years old and I also work full time and I wonder how long I can keep working. I also experience some fatigue but I have been able to power through. I have developed weakness in my right hand and arm. I feel it the most when trying to lift or hold my right arm up. When it happens to me, I also experience a tingling sensation in my arm and/or hand. It feels the same as when your leg falls asleep. I don't know if that is normal or not. My company does provide short term and long term disability insurance that pays 60% of my salary. I will turn 62 in September so I figure if I have to I can file for early retirement while I apply for Social Security Disability. Keep fighting the good fight and hopefully you can get to a better place with your MG management!
Hey! That is awesome that your company offers disability insurance. Are you going to try any other MG treatments? Or waiting until it is more needed?
- Jodi, Team MemberI have only seen my Mayo Clinic doctor so far. My first appointment with my local Neurologist is next week. I have read several studies that suggest that early aggressive treatment can lead to slower escalations of symptoms and better long-term outcomes. When I have brought them up to my Mayo doctor he doesn't seem to approve. At this point my symptoms are manageable. I would like to keep them that way. I would like to be able to work until I am at least 67 if not longer. I made a post in the thread about Low Dose Naltrexone today. I am going to push for it at my appointment next week. According to the study Low-Dose Medication and Long-Term Outcome in Myasthenia Gravis published by the NIH, their conclusion is:
"Conclusions: Most patients with MG will realize disease stability characterized by either remission or MM status. A significant number of such patients were able to be maintained on low doses of medications to treat MG. The MGFA class at year 3 of diagnosis is a clinical predictor of long-term disease prognosis. There was no statistical difference between medication doses and MGFA scores at last follow-up."
This drug at low doses, has little side effects or long term adverse health effects such as those caused by Prednisone. If it doesn't work for me at least it won't harm me like so many MG treatments can.
