[Phil Anders]

Had a thymoma that was removed via Robotic-assisted surgery in August’22 following 5 plasmapheresis sessions, which provided total relief (was completely off Pyridostigmine and started my taper from 40mg Prednisone pre-surgery down to 5mg daily in Jan’23). I was prescribed 4 weekly sessions of VYVGART by my neurologist which was to begin on 9th December but my 1st infusion was cancelled because of high blood pressure (150/110), and this scheduled infusion was never restored in any way. I was started on my 1st of the VYVGART infusions on 17th Dec’22 & after the 2nd infusion on 5th Jan’23 (21 days later due to holidays & scheduling issues at the center), I had felt fantastic with no side-effects at all. After 3 infusions I was informed that was the end of my treatment course! I wasn’t too concerned at that time as I was in full remission or so I thought. My neurologist chose to schedule me for once-a-month infusion on a new Rx after just three were administered on the prior prescription. However, I’ve had a relapse 10 days after receiving my 3rd VYVGART infusion on 14th Jan.
I believe the infusions do help (ACHR Abs number decreased from 5.87 following thymoma removal, to 2.89 after the 3rd infusion), but there may have been a catch-22 scenario in that –  VYVGART makes you more vulnerable to upper respiratory tract infections, which may cause to induce flare ups especially if you have had strong bulbar symptoms earlier. Three days following the third infusion, I experienced moderate flu-like symptoms (runny nose, watery eyes, itchy throat, etc.) and a week later, I had a full fledged recurrence of symptoms, with speech impairment being the worst. I’m currently awaiting insurance clearance for a new monthly infusion protocol that was initiated before my relapse. I’ll see my neurologist on February 16th to see what course of action she recommends next.

I would suggest that post each infusion, try to stay away from public places if you can and avoid situations where you will be exposed to allergens and smoky/polluted air etc.