[Sharon Haw]

During the pandemic, I only shopped online and had everything delivered mostly because I’m taking immune suppressants and I find shopping exhausting. I’m a plus-sized woman so it’s always difficult to get the correct fit, so using a measuring tape and online sizing charts, and reading return and shipping policies were critical. I avoided purchasing from online stores where a trip to a germy post office was the only return option. I still found myself with a bunch of ill fitting, poor quality, out dated clothing since online options can be limited. I now shop in person at a better specialty store for plus sized women in the morning when my energy is highest, the germ load has dissipated overnight, staff have time to help me and I don’t try to do too much at one visit.

Grocery stores and pharmacies are busy, high touch environments so I haven’t stepped inside them since I started immune suppressants. My son picks up the few items that can ‘t be delivered.

I really appreciate stores that still offer curbside pick up so I don’t have to enter the store. Having to personally choose an item and returns are the biggest challenges. I usually plan to shop first thing in the morning on their least busy day and if I hear people coughing or sniffling, I put on a Level 3 ASTM surgical mask. For high germ environments like blood testing clinics, I wear an N95 mask.

Shopping malls are also a no-go, unless the store is right by an exit. Some big box stores are quite the hike to shop in and some have their return counters by the entrance/exit and some at the back of the store. I call the store if I’m not sure. I’ve learned to be more careful about what I order online in order to avoid returns.

[Sharon Haw]

I was diagnosed with generalized MG in March 2019 and took Mestinon 4 X 60mg daily until Aug. 2019, and as needed only in the past year due to a return of occasional double vision and muscle failure. In 2019, muscle twitching was so bad in my right eye that at times I couldn’t see properly when driving, worse in the morning. I also had elevated liver enzymes which was attributed to Mestinon so I was switched to Cellcept. I don’t like being on immune suppressant medication and wish I could return to mestinon or another med that doesn’t compromise my immune system.

[Sharon Haw]

Dry throat and nose is common for me, and paradoxically, so is an overproduction of mucus that sits in the back of my nose and throat which is difficult to swallow although I have no problem with food. I have a post-nasal drip so that doesn’t help. To keep things flowing, I use Neilmed sinus rinse twice a day (once a day I add a pulmicort nebule to it), a humidifier to maintain 35-40% humidity in my home and HEPA air cleaners (a large portable one cleans my entire one level house). I also use nasal gel or oil 2 times per day since the dryness tends to give me nosebleeds in winter. Allergy season usually triggers my asthma so I use bronchodilator and steroid inhalers (Diskus), which make the throat dryness worse. A combination inhaler of the two gave me laryngitis (the generic was way worse) so I went back to using two.

I was diagnosed in 2019 with generalized MG and am currently on 2000 mg of mycophenylate daily. My MG symptoms are fairly controlled but my neuro allows me to boost with mestinon if I notice symptoms worsening which quickly brings them back under control.

[Sharon Haw]

Yes, and thank you, your post gave me an epiphany. I used to be a night owl who did her best work in the late evening and often had insomnia. In the past year, that’s reversed. I’m best in the morning, energy is tapped out by 6 pm and I’m falling asleep sitting up at 9pm. I also need a recovery day after an active day. I was following the “don’t nap” sleep hygiene routine but your post reminded me that it may not apply to those with MG. Since I no longer have trouble falling and staying asleep, I’m going to try the nap route and see if that helps me have more energy in the afternoon/evening or wake up earlier. I was diagnosed in 2019 and am currently stable on 2000mg of cellcept daily.

[Sharon Haw]

I’m in Canada and I’ve had 6 Covid-19 shots, starting with the first 2 Pfizer and the next 4 boosters either Moderna and Pfizer, as soon as I was eligible (with one exception stated below). For the first 4 shots, because I was so stable, my neurologist allowed me to reduce Cellcept for 2 weeks starting 2 days before a shot. I got slightly stronger reactions from the Moderna vaccine but they were mild: a sore arm, fatigue and muscle aches.

This fall, I got boosters for Covid-19, flu and pneumonia, and the new RSV vaccine. My neurologist strongly recommends I get immunized esp. against respiratory viruses because MG affects the lung muscles. Also, I have many co-morbidities on top of MG which makes me high risk, and during the pandemic, ICUs were mostly full of high risk patients. So for me, it makes sense to be immunized.

<font face=”inherit”>Does it work? I had Covid once in August 2021 and the person I was exposed to was quite sick with it. I wasn’t, but I started Paxlovid antiviral meds on day 2 after the symptoms started. Paxlovid stopped the progression of the disease and I was mostly symptom free except for a week or so some brain oddities, like forgetting words and which way to turn the shower faucet off and weird super-salty & super-sweet tastes at </font>times<font face=”inherit”>.</font>

[Sharon Haw]

I’ve noticed that any memory issues are tied to fatigue, both due to MG and amount/quality of sleep I get regularly. I recently got an Apple Watch that tracks blood oxygen levels and found my levels often dip below 90 (lowest was 78) around 1 am and 4 am. I had a sleep study 5 years ago but couldn’t tolerate the head gear and didn’t sleep. I am going back to my doctor with the new data in 2 weeks.

For those of us with smart phones and watches, I’ve found using some of the features helps me remember when I’m tired. I use them to set timers, reminders and leave voice recordings for myself.

I also set up medication reminders on my devices and I dismiss the reminder as I take my meds. My pharmacy packages my pills in pouches that have a date and time on them so I know if I’ve taken them or not. The pouches tear open easily whereas my mycophenylate is packed in bubble packs and it’s hard to push the pills out twice a day.

[Sharon Haw]

I had a good optometrist and family doctor who both suspected my drooping eyelid might be MG and after the ice and blood tests, referred me to a local university’s neuromuscular clinic where I had further tests and was diagnosed. After aggressive treatment (low dose prednisone and pyridostigmine) for the first year, I was switched to mycophenylate for maintenance. Pyridostigmine is a short acting medication so my neurologist said dosage can be self-managed if a specialist allows it but other medications may not be (again, speak to your doctor). I had a negative experience reducing the dosage of mycophenylate resulting in a return of symptoms which I struggle to stabilize. My neurologist had agreed to allow the trial reduction of mycophenylate dosage but cautioned me to immediately return to the previous dose if symptoms returned. He also cautioned that it’s not always easy to return to stability on the previous dose. He was right. We started the trial and a month later, some symptoms started again so I went back to the previous dose. After a year trying to stabilize on the previous dose of mycophenylate, he prescribed pyridostigmine as an additional medication for me to take when I notice symptoms since I’m stable most of the time now on mycophenylate alone.

[Sharon Haw]

I’m stable on Cellcept so my neurologist has taken a wait and see approach on the newer treatment options until my next annual checkup. With so many options in the pipeline, I’m hoping that less invasive delivery methods like oral or injection will be further developed in the meantime. I appreciate the early adopters who are trail blazing with these new treatments.

[Sharon Haw]

Yes, I have, both before and after MG diagnosis. 20 yrs ago, I noticed I was out of breath (gasping) after climbing 2 flights of stairs despite being very fit at the time. It was noted during the pulmonary function and stress tests that my exercise tolerance was lower than normal for my age and fitness level – I tired earlier, but no exploration of the cause was done. The doctor just said the lower exercise tolerance was “odd” given my good fitness level. Over the years, I occasionally tripped climbing stairs and on uneven surfaces. In 2018, I fell walking on an icy sidewalk causing multiple fractures in my ankle, requiring surgery and had a slow recovery. MG was triggered 3 months later just after I returned to work. Since then, I avoid walking outside because I trip on uneven surfaces and my feet often don’t clear stairs even inside. I got a good treadmill for safe exercise and walking poles for outdoors. I had a couple of falls that led me to temporarily pull my walker out of storage. I see a personal trainer weekly for weight bearing and balance exercises. For the most part, my MG is reasonably controlled with just mycophenylate mofetil, but I was recently prescribed a small supply of mestinon to supplement as needed when I notice more symptoms.

[Sharon Haw]

I recall commenting on a previous thread discussing mycophenylate mofetil side effects so perhaps check that one out. There’s a similarly named drug so apologies if I’ve got the wrong one. However, I’ve been on the same dose of mycophenylate (nothing else) as you since 2019 and I find that it’s effect starting waning after 3 years. I have less energy than before and get the same overwhelming fatigue only mine is most often when I wake up at night. I have osteoporosis so catching myself pitching forward because I’m falling asleep when sitting on the edge of the bed is frankly terrifying. I find the body fold rashes mostly preventable with thorough drying after washing with antibacterial soap. I know that antibacterial soap is not recommended but it keeps the rash at bay better than plain soap and I’d have to use topical antibiotics more often anyway if I didn’t use antibacterial soap. I also get at least 1 sinus and 1 bladder infection annually that require antibiotics right away. I’ve had an upper respiratory bug for the past 4 weeks that is slowly increasing in severity as I can’t fight it off completely.

[Sharon Haw]

My symptom that responds the least is occasionally tripping over my big feet due to not being able to lift them enough to clear obstacles or stairs. This happens most often on longer walks (so I mostly walk on a treadmill for cardio exercise or with walking poles) and long flights of stairs but also at unexpected times, like the other day when I didn’t clear the threshold exiting the shower and fell. I have osteoporosis so falling is a huge risk. I’m on 2000mg of mycophenylate mofetil daily and otherwise symptom-free. I’m a 68 yr old woman, 5’4″ with size 11 feet – I call them my Hobbit feet.

[Sharon Haw]

The only supplements that my neurologist recommends are Vitamin D (2000 IU) daily and calcium preferably naturally occurring in a whole food source for better absorption but supplement if needed to reach 1500 mg daily. The calcium is more because of the medication I’m on and I have osteoporosis. He also said I could take more Vitamin D (I live in Canada with limited sunshine) but not to exceed 5000IU as the toxicity level beyond that has not been well established. I am transitioning to a vegan diet and have been advised to get tested for my Vitamin B12 level once I’m further into the transition. I heard from a registered dietician that turmeric with black pepper (helps with absorption) is a good supplement for vegans. I’m not there yet and I haven’t asked my neurologist about that yet. I treat supplements as drugs – with MG, the fewer I take the better. The rarity of MG means that research rarely includes MG patients. Vitamin D has been shown to support a healthy immune system in large studies.

[Sharon Haw]

I am lucky to have both a knowledgeable trainer and PT who understand go at my pace. The goal is to keep my balance and muscles functioning so I can live a mostly normal life. Lifting my feet when fatigued is a challenge & frequently a trip hazard so I use walking poles for shorter walks outdoors & the treadmill for longer walks most days to prevent falls.

[Sharon Haw]

While a cure may not be on the horizon, there is hope on the treatment front. I’d be over the moon if I could kick immune suppressant medication to the curb but not if the cost is MG instability. I’m on mycophenylate mofetil. The first year of treatment was aggressive with low dose prednisone & Mestinon, and unfortunately the latter elevated liver enzymes so I was switched to mycophenylate mofetil after weaning off prednisone. All of these meds eliminated my symptoms. After 3 yrs symptom free on mycophenylate alone, and a couple of 2 week trials off it to boost my immune system for immunizations, my neurologist gave me the green light to reduce the dose in half to see if I was in remission. A month later I couldn’t open a water bottle and I would see double when I looked up. My neurologist warned me returning to stability might not be as simple as returning to my previous dose, and he was right. It took 6 months back on full dose to resolve symptoms completely. Luckily I had been watching for the tiniest symptom. I would love to be off immune suppressant medication someday because it restricts socializing especially in our long winters here but for now, I’m thankful to be stable and feeling normal again.

[Sharon Haw]

There are plenty of treatment options for MG. Many peer reviewed articles do point to MG patients having less healthy microbiomes. While research continues, probiotics supplementation does have a couple of risks to be aware of. The first is that the supplementation industry is NOT regulated and some manufacturers may mix bad bacteria in with the good. This article is a plain language overview of some of the risks https://www.menshealth.com/nutrition/a42433382/probiotics-side-effects/# and what to look for (third party certification). I don’t take supplements, I get supplementation from food sources high in nutrients, etc.

[Sharon Haw]

20 years ago, I moved back to my home city, with a recurrence of allergy symptoms, sinus and lung infections, and new trouble climbing stairs. A lung function and stress test revealed that I tire sooner than normal when exercising but there was no follow-up. In 2018, I fractured my ankle and was off work for 3 months. 4 days after I returned to work, at 3:30 pm, I started sneezing and had profuse nasal discharge, which subsided after an hour. I noticed my left eyelid was drooping a bit. Later that night, the double vision started. I saw my optometrist the next day, who suspected I might have MG but referred me to an ophthalmologist just in case it wasn’t MG, and advised me to see my doctor asap. After ruling out several possible conditions, my doctor also suspected MG, did the ice test and blood tests, and referred me to the rapid response neuromuscular clinic attached to a local university. Further blood and muscle stimulation tests confirmed I had generalized MG. It took only a month from onset to diagnosis. The neurologist felt I probably had MG lurking in the background for most or all of my life. I realized in hindsight that I eat slower than most, heat saps my energy and my family has a lot of autoimmune conditions.

[Sharon Haw]

Great information, Jodi! I’ve found that since my MG diagnosis, I’ve become anxious during cleaning and dental procedures because I choke frequently, especially when water is sprayed. During the height of the pandemic, hygienists weren’t using air or water power and what a difference! So they’ve noted on my chart to not use air or water except for suction and occasional rinsing. Although my dentist is familiar with MG, the hygienists aren’t so well informed so I take a few minutes before they start to explain why I need them to avoid spraying water anywhere near my throat and to use suction more often for saliva control so I don’t choke. My dentist gives me a second suction tube so I can control saliva during procedures, although a couple of his assistants are excellent at keeping fluids away from my throat. Anyone else have some practical tips we can try?

[Sharon Haw]

My neurologist (Canada) said the usual drug protocol upon generalized MG diagnosis is to treat for a year with low dose prednisone AND a longer term less invasive med like mestinon. I had elevated liver enzymes on mestinon which was replaced by mycophenylate. I was weaned off prednisone by 1 year & continued on mycophenylate alone.  Mycophenylate is an immune suppressant, mestinon is not. Best to start with the less invasive treatment first.

[Sharon Haw]

Very mild fatigue for a couple of hours after the Evusheld shots but no other reactions. Not even sore at the injection sites. I had to wait 14 days after my Covid symptoms were gone to get the shot. I got Covid just as I was due for my next booster (5 months) but Paxlovid (antiviral pills) really helped. I can’t get my vaccine booster until 14 days after the Evusheld shots.

[Sharon Haw]

After 3 years, last week my neurologist reduced Cellcept (Mycophenylate Mofetil) to 2  from 4 (500 mg) pills daily  to see if I am in remission. He said the current thinking is that MG doesn’t go into true remission and that the symptoms are lurking in the background at levels that aren’t noticeable to the patient and could easily be triggered. He cautioned me to monitor for symptoms closely and contact him at the first sign as it may not be so easy to bring me back to my current state by simply increasing Cellcept. I may need aggressive treatment to reverse the escalation of symptoms similar to the first six months after initial diagnosis (Cellcept and prednisone). That said, he has 2 patients that have been off medication for 20 and 30 years respectively, and several others for less time than that, so he felt it was worth a trial based on 3 years symptom-free and the 3 brief times this year that I reduced or stopped taking Cellcept to improve immune response for my last two Covid boosters, and while I had Covid and was on Paxlovid (antiviral pills) for 5 days.

[Sharon Haw]

Yes I have Covid now. My first symptoms were Aug. 19, 2022. I had 4 shots, but was due for a full booster on July 24, 2022. Foolishly decided to wait for a bit to hear when variant booster would be available. Learned I could have had Evusheld antibody shots as preventative but I have to wait until 14 days after Day 1 of symptoms. Initially, bit of cough, bit tired, sore throat, brain fog and upper mid back pain – all off and on, one at a time. On Day 1, was prescribed Symbicort inhaler and Pulmicort nebules to use in sterile sinus rinse. Started 5 days of Paxlovid antiviral pills on Day 2 of symptoms which stopped it from worsening and slowly got better. Vomiting and diarrhea with first dose but I took it on an empty stomach after that and no more stomach upheaval. I’m on day 13 after symptoms started and I’m more tired than before but I overdid it two days ago and have been more tired off and on since. Caution: don’t return to normal activity level until your symptoms are gone. My neurologist said not to stop Mycophenolate but I reduced the dose to 2 (500 mg.) capsules per day from 4 on Day 1 of symptoms, and I’ve increased it to 3 per day today.

[Sharon Haw]

I’d be interesting in hearing about anyone’s experience with Evusheld as well and if they had it after having had Covid or before.

[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 night I noticed double vision whenever I looked upwards. I saw my optometrist the next day who said my vision was fine but suspected it might be myasthenia gravis and he told me to see my doctor. I was diagnosed with generalized MG by a neurologist 4 weeks later. The sneezing and profuse nasal discharge episodes occasionally recur whenever I’m really stressed or very tired.

[Sharon Haw]

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 to take a sleeping pill. I can’t get back to sleep until 5 or 6 am. Frustrating because I follow all of the sleep hygiene and relaxation recommendations. The acne is frustrating too as 30 yrs ago, I had 3 rounds of Accutane (oral Vitamin A derivative) to resolve adult-onset acne, and have had beautiful skin since. That’s gone now. When I went off Cellcept for 2 weeks for each of the last 2 Covid shots, I felt great and had tons of energy. My neurologist said after 3 years of stability, I could trial being taken off Cellcept to see if I am in remission. 3 yrs is in 2 months – I can’t wait!