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Refractory Seronegative MG – Looking for Guidance and Treatment Options
Hello,
I am writing to seek advice and guidance regarding my wife, who was diagnosed with Myasthenia Gravis two years ago.
Since her diagnosis, she was treated with Mestinon 60 mg four times daily during the first year, and for the past year she has been taking 120 mg four times daily. In addition, she has been receiving IVIG at a dose of 20 g every two weeks. Despite this, she has experienced two major exacerbations that required hospitalization and five-day IVIG loading treatments.
She has been on CellCept (mycophenolate mofetil) at 2000 mg per day for approximately one year, and has been taking Prednisone 15 mg daily for several months.
Unfortunately, this combination of treatments has not led to meaningful stabilization or improvement, and her condition remains very poor. We are feeling increasingly discouraged and are seeking information about additional treatment options for patients with seronegative Myasthenia Gravis.
We would greatly appreciate hearing about any alternative therapies or treatment approaches that have shown effectiveness in similar cases. Additionally, we would be grateful for recommendations for experienced MG specialists anywhere in the world who might be able to help guide us in determining the next steps. We are open to international consultations, via Zoom and etc.
Thank you very much for your support and for the important work you do for this community.
Kind regards,
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3 Replies
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So sorry you both are going through this life changing disease. Your story sounds so familiar…I scrolled down to comments hoping for a reply with ideas! I’m on the same treatments except for my IVIG dose is larger (weight calculation). Is she also on prednisone? At 60mg all my symptoms were gone except for the double vision. Because of the side effects, I went through the torment of downgrading every month until I hit 20mg which I am still on. My IVIG was changed to every two weeks 2 months ago. I’m doing much better, but can still overdo it and the breathing problems exacerbate along with muscle weakness. Double vision has improved for the 90%, but still extremely troublesome. Next up we will discuss adding Rituximab to the IVIG or trying to get approval for Vvgart. I have been in the hospital every 3 months since last May 2025 too. I’m at the 3 month mark now crossing my fingers and being careful I don’t cause an exacerbation. Good luck!
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Hello- my experience when i had lots more symptoms had me at a much higher pred dose – like 60 mg ; my baseline is 10 mg.
I’m also on ivig – 45 gm per month and my mg specialist said he could treat up to 2 gm/kg per month for someone with active disease . We might go to 45 gm every 2 weeks if i don’t have enough success with monthly dosing.
I would recommend going to a university or teaching hospital such as Johns Hopkins , Mayo Clinic etc.
My local doctors were just guessing and experimenting… i go to Johns Hopkins for MG specialist and Hershey medical center for rheumatology. Then i have a local Neuro who is willing to treat me according to Johns Hopkins recommendations so that i don’t have to travel 1-2 hours for ivig.
I have 3 autoimmune diseases – perhaps there’s more going on than just the myasthenia gravis.
Please hang in there, don’t be afraid to get a 2nd, 3rd or more opinion until you’re comfortable and satisfied with the doctor- and the treatments.
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Thank you very much for your response. I’m so sorry to hear that your story is similar to ours. It’s incredibly hard, and everyone goes through an unimaginable journey within this illness.
My wife is currently on 15 mg of prednisone. In the past, when she went up to 40 mg, it did not lead to any improvement. The collapse we’ve been experiencing over the past month happened when we started trying to taper the steroids by 1 mg every two weeks. We reached 13 mg, and there was an immediate deterioration of the disease — complete helplessness, worsening of all symptoms — and we haven’t been able to get out of it.
On the other hand, the doctor decided to double the IVIG dose to 40 grams every two weeks, and we started this week. So far, there hasn’t been any real change.
We tried CellCept for 11 months and stopped it a week ago. Now we’re waiting to understand what the next line of treatment will be. We don’t know whether Vyvgart will be approved for us as seronegative patients, or whether we will be required to go through rituximab first.
We’ve heard some negative reviews about rituximab. Does anyone here have information regarding the effectiveness or quality of this treatment?
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