Sharon Haw

None on the list – in fact I’m allergic to some of them, namely all the penicillin, sulfa and erythromyacin type antibiotics. My MG ocular & upper respiratory symptoms appeared 3 days after I started back at work 3 months after surgery for a fractured ankle. After surgery, I had morphine and aspirin for pain, and an antibiotic not on the list but…[Read more]

I also use a portable A/C with dehumidifier in summer and recently added a larger room portable true HEPA air cleaner to my office, which I move to my bedroom at night. In winter, I swap the A/C for a humidifier since the HEPA air cleaner removes some moisture from the air. It’s important to get the type of true HEPA air cleaner without…[Read more]

Ronald, you have my heartfelt sympathy. I realize that working from home or different work schedules is not possible or even desirable for everyone. My mother had dementia for the last 10 years of her life and since my MG didn’t emerge until after she passed, I can’t imagine how challenging it is for you to deal with MG on top of working full-time…[Read more]

Since I started this thread, I continue to work at home (since March 2020) and my health has steadily improved due to less exposure to others, less stress and more time to focus on wellness. I’ve kept my generalized MG firmly under control, with only a very occasional stumble if I’m tired.I’m 67 and my energy levels were in decline. I changed my…[Read more]

I’ve been working at home since March 2020 and within 2 months, my doctor cut my blood pressure meds in half. Definitely less stress since I’m at home alone all day.  I worked in an open workstation environment where I couldn’t concentrate and stayed 4-5 hours after work to get my work done. Now I work 4 days a week and still get all my work done…[Read more]

My face flushes and gets hot to touch immediately from alcohol but it subsides quickly. I rarely drink and 1 glass of wine is my limit but even that gives me insomnia that night. My neurologist said to avoid alcohol and coffee. I’m only on Mycophenolate (CellCept) now. The flushing was worse when I was on Prednisone and Mestinon when I was first…[Read more]

Road trips are the safest way to travel for me. I always get a bacterial respiratory infection within two days after a plane trip since I’m on immune suppressants. I waste precious vacation time being sick and finding a local doctor. After falling in NY due to MG muscle fatigue after walking those long blocks, in cities, I’ve learned to plan…[Read more]

Pfizer 1&2 in March/April, 3rd dose Sep.22. My neurologist doesn’t recommend stopping Cellcept but I reduced the dose by 1/4 for a week before &after for first 2 doses, had no reaction after first, & very mild tiredness/chills for second. I read a Johns Hopkins study that included Cellcept & dose reduction was done for doses. Too small a study t…[Read more]

Your post was clear – my post agreed on the importance of regular blood tests to monitor the liver. I probably shouldn’t have mentioned that testing was also done in my case with Mestinon & continued once I was switched to Cellcept. Monitoring in my case confirmed that Cellcept is being tolerated.

Excellent point about liver enzymes which is one of the reasons I was switched from mestinon to cellcept. I had monthly blood tests until Covid hit. My doctors weighed the risk of catching Covid at a busy lab against a year of normal blood tests & decided I could forego the tests temporarily. Had a test recently- still normal.

I’m on 2000 mg mycophenolate mofetil (cellcept) per day for the second year. I was diagnosed with generalized MG a month after my eyelid drooped, and was on steroids and mestinon the first year, then weaned off steroids and switched to cellcept because mestinon was making my eyes twitch so hard I could barely drive. My neurologist says the cancer…[Read more]