[Scott McCormack]

Big relief this week as I received the EvuSheld injections! As I am now tapering down Prednisone (and transitioning to CellCept), my immunity is pretty much zero. EvuSheld makes COVID much less of a fear. Still need to worry about colds and flu though. Masking up will still be important going forward.

[Scott McCormack]

Hi all-  D3, C, Omega 3, Tumeric, zinc, and ,due to the prednisone I take, Calcium.

[Scott McCormack]

Very informative.  Thank you for this timely post as I am going in for oral surgery (including some bone reconstruction) next month.  It is scheduled two days after my next IVIG infusion.

[Scott McCormack]

I have had a 10 pound weight gain, probably due to the 80mg of prednisone I take daily.  As far as affecting my MG (moderate gMG ACHR-positive), I can’t quantify any differences.

[Scott McCormack]

I’m not sure that burden is the right word but I definitely feel that I no longer uphold my fair share at home.  As an example, we are preparing to put our Christmas decorations for both the inside and outside of the house.  For decades, I always did all the outside myself.  Now I’m lucky to do 25% of the work.  There are many more areas that I used to be able to do so much more.  I am very lucky to have an incredibly understanding wife but it still bothers me.

Logically I would tell someone that all they can do is the best they can but emotionally it’s not so cut and dried.

[Scott McCormack]

My concern is that I am on 60mg of Prednisone daily which can reduce or eliminate my immune response from the vaccine. In addition, My MG had been in remission for about a year and only affected mouth, jaw and eyelids when I received my second Moderna shot in March. Two weeks later I was hit with severe weakness in most of my voluntary muscles except, thank goodness, my lungs and throat and still continues today. Was it related to the shot? Who knows. I am passing on the booster.

[Scott McCormack]

Hot showers exhaust me on most days.  I have had to dial back the temp to lukewarm.  A hot shower is just one of the things I miss from my pre-MG days.

[Scott McCormack]

The biggest misconception I hear is ‘Are you feeling better now?’.  Undoubtedly due to being a rare disease, people don’t understand this is a lifetime disease, not an illness that passes like the flu.  Couple that with the snowflake effect that makes MG different for everyone as well as every day different for each sufferer, it is impossible for those not afflicted to understand.

[Scott McCormack]

<p style=”text-align: left;”>I am in the ramp up process with Prednisone, currently at 60 mg/day.  Although I was fully vaccinated (Moderna) in March, I wear an N95 respirator mask anytime I go out.  I also limit my public forays to necessary trips.  The biggest challenge is my wife’s fear that, although also vaccinated, she could acquire the virus and pass it to me.  No easy answers but we try to strike a balance between safety and living a good life.</p>

[Scott McCormack]

Interesting. The Vyvgart website says that it is for ACHR-Positive gMG.

[Scott McCormack]

I am lucky to have many Medicare insurance choices where I live (Southern California).  I chose Kaiser and am very glad I did.  I was diagnosed by my PCP 5 years ago with localized MG (jaw, mouth and eyelids) and referred to a neurologist, put on prednisone and Mestinon, and symptoms went away after about two months.  Four years later (March 2021) I came out of remission with most muscles in my body extremely weakened.  Kaiser ran tests on my heart, breathing, kidneys, and  liver to rule out other possibilities before diagnosing it as moderate generalized ACHr positive MG.  My neurologist  took a conservative approach with a higher dose of prednisone and time release Mestinon. Since my symptoms have not improved much, I am now also doing IVIG infusions.  My doctors listen and are always available to communicate with.

[Scott McCormack]

• Totally get what you’re saying.  There is nothing cut and dried about what we go through.  It truly is the snowflake disease.  No two people react the same, treatments that work during one flare may not the next and no two days are the same.

[Scott McCormack]

Yes, leg strength and especially stamina are affected.  Arms, wrists and fingers also.  Pyridostigmine 180mg time release 3x daily helps as does our single level home.  Voice when I am fatigued, stressed or overheated.

[Scott McCormack]

Suddenly five years ago my jaws got easily tired when doing a lot of chewing, my speech sounded a little drunk when talking for any length of time and my left eyelid drooped a bit. My wife (Dr. Google) looked it up and came up with something I never heard of; MG.  I went to my primary care the next day and he and I discussed probable causes.  He also felt it was most likely MG and referred me to a Neurologist.  A positive AChR antibody test confirmed and the rest is history.  All told it took less than two weeks before I was on meds (Mestinon and Prednisone).  I was one of the lucky ones with a quick diagnosis.

[Scott McCormack]

Before I retired two years ago, I traveled three out of four weeks and always noticed that people from Asia on planes often wore masks but I didn’t understand why.  I sure do now.  I am traveling on a cross country flight in a few weeks and will have an N95 mask (with valve) plus a standard 3-layer mask on top of that.  Social distancing isn’t an option on aircraft anymore but if you opt for the extra legroom area offered by most carriers, it will reduce the density somewhat.  Pick up your own water bottle in the terminal before boarding.  The food on the flight should be safe but you can also bring your own on.

In short, enjoy your travels.  You should be fine.

I am vaccinated but declined the booster on doctor’s recommendation (I went from minor facial MG in remission to moderate gMG two weeks after my second Moderna shot.  Maybe a coincidence but there seems to be traction of this happening with more than a few people).

Happy travels!