Sharon Haw

I fractured my ankle requiring surgery and was off work for 3 months. At the end of the third day after I returned to my very stressful, high-pressure job, I started sneezing and had profuse nasal discharge. My left eyelid felt unusual and when I looked in a mirror, it was drooping. The sneezing and runny nose stopped after an hour. Later that…[Read more]

I’m on 2000 mg Cellcept per day and I’ve noticed facial puffiness, constant skin and other infections, tremors in my hands/arms while exercising, fatigue and a marked change in sleep pattern. I used to have trouble getting to sleep, now I am so tired that I fall asleep right away but wake up fully alert usually 2 or 3 hours later when its too late…[Read more]

I’ve been using blue light glasses for 3 years. My MG is well controlled with medication so I don’t notice any difference when I use them or not, except for more eye strain without them. Everyone is different and although I don’t notice a difference now while my MG is stable, I really appreciate that you shared your positive experience with blue…[Read more]

Definitely heat – even cooking in a hot kitchen – and I have to wear my hair off the back of my neck and use cold water to cool my face and neck, or I get profuse sweating and even a sudden nose bleed. Also, more noticeable fluctuations in feeling changes in temperature even at night. I can be cold one minute and blazing hot the next. My…[Read more]

My neurologist said there is no cure but remission is possible – he used the word remission Since he is part of 3 clinics, including the neuromuscular clinic at our local teaching and research university where I see him,  I assume he’s current on terminology. I’ve been stable for almost 3 years now and the plan is to reduce then eliminate immune…[Read more]

I’m in Alberta, Canada, and got a full dose of Moderna as my 4th shot on Feb. 27 (5 months after the 3rd shot of Pfizer. I had the strongest reaction yet – a super sore arm, a day in bed with strong muscle aches – all gone within 24 hours after the shot. The most challenging part was getting reliable advice on pausing Mycophenolate Mofetil…[Read more]

I babysit my 3-1/2 yr old granddaughter two days a week from 8am-6pm. She’s really energetic and due to the pandemic restrictions, as an only child, she’s had only 1 friend her age, so I’m more of a friend. The energetic activities are the most challenging. We’ve developed some compromises, such as we take turns dancing but her turn is much longer…[Read more]

I was a government executive public relations manager until age 64 when I was injured walking to a meeting at our capital building with elected officials. I was off work for 3 months followed by 6 months of rehab several times per week. My job required me to regularly attend high profile in-person meetings and the capitol building had limited…[Read more]

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]