[Bill Johnson]

Hello, Richard:

As with some of the other responses, I think the term “remission” is complicated (and probably hard to achieve with MG).  However, I am writing to give you some hope as I believe I am in a pharmacological remission – I have had no appreciable symptoms for four (4) years.  I feel blessed.  However, I have been on rituximab 1,000 mg. IV infusions every 6 months.  Unfortunately, the rituximab causes significant immunosuppression: B-cell depletion and antibody depletion.  Consequently, I have to be careful making sure that I avoid situations where I could be exposed to a significant infection, and it is work with all the labs & appointments monitoring my immune system.   I am hoping they eventually come out with a more selective drug that isn’t so immunocompromising.  Nonetheless, I currently believe the trade-off is worth it.

Regardless, the goal you and your provider should strive for is an optimal balance: the least amount of symptoms using the least amount of drugs.  I also suggest you get a second opinion from another provider (familiar with MG) on your treatment plan — two heads are better than one.  That’s how I got to where I am now (symptom free).

Godspeed to you in your journey with MG.    — Bill

[Bill Johnson]

I was diagnosed with Oculobulbar Myasthenia Gravis 25 years ago after experiencing an acute myasthenic crisis.  I was hospitalized for several weeks while I underwent several rounds of plasmapheresis, IVIg, high-dose corticosteroids, and ultimately a thymectomy.  I recovered relatively quickly, and for nearly two decades I was effectively treated with 150 mg. of daily azathioprine.  On a couple of occasions when my symptoms would begin to peak through the immunosuppression, short, 2-week treatments of high-dose prednisone were given to reduce the auto immune response.  In recent years, I was diagnosed with Anti-MuSK myasthenia gravis which slowly became refractory to azathioprine and IVIg therapy.  After several rounds of hospitalizations for exacerbations (successfully treated by numerous PLEX and prednisone), in 2020, it was felt that IV rituximab 1,000 mg. would be most cost-effective.  I was slowly titrated off the prednisone over a 14-month period.  I have continued that treatment plan for the past 2 years and have remained <u>symptom free (now only Ruxience™ 1,000 mg. IV every 6 months, due to insurance)</u>.  Haven’t used mestinon in over 2 years.  I have no side effects, other than immunosuppression (i.e., no B-cells, but moderate T-cell response).  I now see an immunologist on a bi-annual basis to ensure that my immune system status is monitored – this has proved to be a worthwhile referral.

[Bill Johnson]

I am receiving rituximab infusions every 6 months, so I have no B-cells and therefore, create no antibodies.  As such, my immunologist recommends Evusheld.  I received my first series (300 mg. tixagevimab & 300 mg. cilavimab) of IM shots in mid-March 2022.   I don’t recall having any appreciable side effects.  Unfortunately, I got COVID in mid-May.  I was able to get Paxlovid quickly, so my symptoms were that of a week-long cold (runny nose, occasional cough, etc.).

I am due for my next dose now (September).  I am trying to find a clinic that administers Evusheld near my home, but that is proving very difficult.  The FDA/HHS website is out of date (www.covid.gov).  Furthermore, I have learned that my insurance (UHC) does not cover Evusheld (since it is EUA).  I may be relegated to go to a “wellness spa” that provides apothecary and anti-aging IV hydration costing me $250 out-of-pocket.  Sounds rather “fly by night” to me, but it may be my only option.  Very frustrating.  Will post updates.

[Bill Johnson]

I have anti-MuSK MG, treated with rituximab 1,000 mg. infusion every 6 months. I got the Moderna vaccines (two doses) in Feb. 2021, received my rituximab infusion in May, and then in June 2021, when tested, I had no antibodies to SARS-CoV-2. My immunologist felt that boosters were a waste of time and vaccine because of the effects of the rituximab. At the time, my only option was to isolate (or be masked and careful when out). After Evusheld was released in January, my immunologist wrote me a script. I had to get on a waiting list. When they called me, the nearest site was over an hour drive away, but I opted for it. They gave me a double dose (4 vials IM which is standard for the first dose) on March 18th. I had no symptoms after the administration. We haven’t drawn antibodies yet to see if I have generated any. I understand that I will need to return every 6 months for the Evusheld. Keeping my fingers crossed. Hope this information helps.

[Bill Johnson]

Received the two (2) Moderna shots in early 2021, then received my usual rituximab infusion in May (get Rituxan every 6 months).  Unfortunately, the rituximab inhibited the creation of any antibodies (confirmed by serum antibody test).  Unfortunately, I contracted COVID-19 in the fall, but was fortunate enough to have started monoclonal antibody treatment very early in the course of the disease.  I’m not sure if I would be writing this if I didn’t get the monoclonal antibodies.  Anyway, my physician says that a booster would be a waste of a shot since I will receive Rituxan in a couple of weeks.

[Bill Johnson]

Sound advice, Douglas.