[Frank]

Since the pandemic, I don’t go out as much as I used to, but when I do, I always wear a mask. If people come to the house even if it’s to meet outside, I wear a mask. Since the pandemic, I went until three weeks ago without ever being sick. Three weeks ago I got a mild case of Covid that went away in a few days. I know it helps that I also eat a plant-based diet, which reduces the stress on my body and therefore makes me less vulnerable to flares with my MG. I’m also on a low-inflammation diet which also helps keep my physical stress levels low. And when my stress, physically, mentally, and emotionally, is low. I know that keeps me stronger and more able to withstand outside viruses and bacteria. It helps that I live with two members of my family. There are amazing caregivers and great companions. So not going out and socializing isn’t much of a problem for me. That’s how I’ve dealt with the cold and flu season for the last year since my diagnosis.

[shawna-barnes]

Hey Frank. Thanks for sharing. 🙂

I still go out as normal, but I avoid crowds during this time of year. My best friend’s daughter plays volleyball and I didn’t go to any of the games because there was a bug that was going around. I can’t wear a mask on a regular basis because I find it hard to breathe with my diaphragm weakness.

I do get the pneumonia shot and I use some holistic practices to help keep me as healthy as I can be. I diffuse essential oils like eucalyptus and wintergreen, I have air purifiers going, and I ask friends/family to not come around me if they are sick.

I get IVIG biweekly which seems to help as well.

Knock on wood, but this year I’ve been pretty illness free which has been amazing.

[Joe]

Hi Shawna, I just have a question for you.i know you are seronegative.can you tell me what meds help you.im currently getting ivig. But doesn’t seem to help much.i tried mestinon and steroids but they didn’t work

[shawna-barnes]

Hey Joe.

I am on quite the cocktail.

In 2019 I had a thymectomy; a CT found that I did have an enlarged thymus so it was removed.

I am currently on Azathioprine (Imuran), prednisone, pyridostigmine bromide (mestinon) and IVIG.

Dosage can make a HUGE difference, and it can take 12-18 months for the benefits of any immune suppressant like Azathioprine to be seen. For a while I was at high dose prednisone (50-60mg/day). I’m finally in the wean down process and am at 15mg/day. I also get 1g/kg for IVIG.

It may not be something like an either-or scenario, but an and; as in what else should be added or adjusted to help see improvement.

Also, be honest with yourself. Are you not seeing improvement because you’re still pushing too hard and asking more of your body than what you’re capable of? Sometimes we self sabotage by refusing to slow down and meet our bodies where they’re at until the MG gets stabilized. That is when I started noticing improvement; when I slowed down, accepted the diagnosis, and did all the things I needed to. I hope that makes sense?

And while not medication, something else that has been helpful for me in reducing symptom expression has been an elimination diet (currently using the carnivore diet) to help identify foods that were causing inflammation in my body. While not a cure, I’ve found that the less my body is fighting itself, the better my treatments seem to work.

If you haven’t dug around the archives and conversations here or over at MG News in the articles/columns, I encourage you to do so. There are a lot of great resources and articles that showcase just how different we all are in how MG affects us and what treatments may be helpful.

-Shawna

[shawna-barnes]

Hey Joe.

I had this long reply written and thought it shared..but it did not. So let’s try this again. 🙂

I am on Azathioprine (Imuran), prednisone, extended and immediate release pyridostigmine bromide (mestinon) and biweekly IVIG.

It has taken 5+ years to find a treatment plan that works for me. I noticed on your profile that you’ve been dealing with this for 8 months? Don’t give up on finding something that will work quite yet. Definitely talk to your care team about how you’re feeling and where you’re like to be.

Something else to consider is to take a look at what you are doing. Are you self-sabotaging by still trying to live life like the “old you”? I know this was hard for me to accept and really slow down and accept my diagnosis and what that meant. Sometimes we don’t give our bodies the opportunity to allow the meds to do their job because we are still trying to push beyond our limits. A year ago I was only able to do about 1,000 steps a day. I’m now up to 2,200 and surpass that on an almost regular basis. It’s almost time for me to up my daily goal. 🙂

If you haven’t yet, I encourage you to take a look at the the columns and resources that MG News has available. There are lots of reports and anecdotes about what has worked for folks. There are also new treatments and studies being rolled out all the time.

-Shawna

[Amy Cessina]

Something that has worked well for me is to rinse my nose with just plain saline in a can from the drug store. Nothing fancy . When I come in from a store of our I just give a few sprays . Seems to keep everything mild. I occasionally use zicam which is holistic plant based. Wash my hands and eat right. I sat next to my coworker on a business trip he caught the flu and had fever and coughed on me for 2 days and I didn’t get it.

[shawna-barnes]

Thanks, Amy!

So do you use a neti-pot? Or just a simple saline nasal spray to keep your nares (inside of your nose) moist?