My Vyvgart Experience

Last updated: June 2022

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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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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