My Vyvgart Experience
I am AChR-positive, and allergic to Prednisone, so my treatment is Pyridostigmine only. I was at 60 MG 5 times a day and struggling.
IVIG was a miracle treatment
I have received 4 rounds of IVIG in the past year and a half, and my response to IVIG was immediate. I considered it a miracle since choking and swallowing were a daily battle.
My symptoms are ptosis, double vision, neck weakness, swallowing, choking, speech (both stutter and slur), loss of voice, trouble breathing, arm muscle weakness, incontinence, and muscle pain.
But I could no longer receive it...
Recently after two peer review appeal processes with my insurance, I was denied for IVIG unless I was admitted to a hospital in crisis. I was excited to be approved for Vyvgart as an alternative treatment.
An alternative option that works
I am happy to report my excellent response to it. I hope my experience will help others in their decision to give it a try. I feel great! I have a 72-day break before it will be determined if I need another round. That’s 10 weeks without an infusion.
My Vyvgart treatments were on a Wednesday and started May 18, 2022 and ended June 8, 2022. I had no issues. Slight fatigue after the infusion which was remedied by resting when I got home. The treatment was quick and easy; 1-hour infusion plus 1-hour observation only once a week.
Vyvgart vs IVIG
The response time works a bit differently than IVIG, Vyvgart was a bit slower, however each week I felt stronger and better. I am able to drive take a walk, comb my hair, and style it without a break. I don’t need a nap. I can speak without issue. My vision is normal. I still have slight swallowing trouble but not serious.
The infusion process is easier, it works just as well and possibly better for me as IVIG didn’t last for more than a month. Since this is new, and an ongoing process, and the fact that I am only one week after my last infusion, I will update my response at week 10.
As for Vyvgart side effects, I had none. I am someone who has sensitive skin and I can get a rash from the wrong type of soap. I have had no rashes headaches or infections. My white count was low to start and normal as of yesterday (10 days after last infusion).
I was assigned a nurse from Argenx who was wonderful. I received a journal to log my symptoms with an assessment scale for each week. Just knowing you have a team there for you in a new journey with a new treatment relieves a lot of stress. I went from an assessment value of 13 in week one, to 7 in week two, 3 in week three, and 2 in week four.
Where I am today
I continued with Pyridostigmine reduced to 3 times a day after my third infusion per my neurologist. I had two days when I felt so good I actually forgot to take it for a longer than 6-hour stretch. But I noticed after trying to go without for more than 8 hours ( a choice I made on my own to test my response because no one knows and couldn’t answer if I needed Pyridostigmine after treatment) I did feel some symptoms, slightly. Rather than risk a set back I continue with 60 MG 3 times a day.
As a side note, I am a 66-year-old female and although incontinence is not a GMG symptom for everyone, it kept me from sleeping. Most nights I would get up 4 to 5 times And I could not go anywhere without planning a trip around the nearest bathroom. I knew from my response to IVIG that the incontinence was related to my MG, as it always improved. After Vyvgart week two, I was able to sleep through the night only getting up once. I also suffer from Hashimoto's, Psoriasis, and ME/CFS.
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