Not reacting to treatments
Hi there im a caretaker and my spouse has MG
3 weeks ago he was not feeling good since the new IV treatment was not lasting him ( vyvgard)
And had to go to ER
Next day his neurologist came and suggested he do the plasma xchange after 6 treatments nothing changed then he got 5 days of IVIG and still no improvement next comes 5 more days of IVIG and i hope this helps his neck and arms are weak
This has been very hard
Has anyone had a similar issue????
It sounds as though your husband could have refractory MG, https://myasthenia-gravis.com/clinical/treatment-refractory. "Refractory MG is a serious condition in which symptoms do not improve after the use of:
Steroids and other immunosuppressants
IVIG
Plasmapheresis"
https://myasthenia-gravis.com/crisis-treatment.
----------
Refractory MG refers to anyone who aligns with one or more of the following:
"MG symptoms that do not improve with typical drugs (including steroids, acetylcholinesterase [AChE] inhibitors, or at least 1 immune system-suppressing drug)
Relapses that occur when trying to wean off of treatment
Symptoms that require regular rescue therapy with intravenous immunoglobulin (IVIG) or plasma exchange
Severe side effects to common MG drugs that make treatment difficult or impossible
Recurrent MG crises (potentially life-threatening exacerbations) despite being on treatment."
----------
Did your husband have a thymoma, https://myasthenia-gravis.com/thymoma?----------
Is your husband on Acetylcholinesterase inhibitors, prednisone, or other immunosuppressants, or has he been on these before? Typically the order for MG treatment is acetylcholinesterase inhibitors and mestinon. If that does not show improvement, steroids (prednisone) are usually tried next.
Some people who cannot or prefer not to take steroids or see no improvement from the steroids start stronger drugs to suppress the immune system are used, immunosuppressants:
Azathioprine (Azasan®, Imuran®)
Cyclosporine (Gengraf®, Neoral®, Sandimmune®)
Methotrexate (Rheumatrex®, Trexall®)
Mycophenolate mofetil (CellCept®, Myfortic®)
Tacrolimus (Astagraf® XL, Envarsus® XR, Prograf®)
Vyvgart is a biologic for people with refractory MG. However, if your husband has not tried Acetylcholinesterase inhibitors, prednisone, or other immunosuppressants, this could be why the MG is unable to be controlled.----------
Do you know the type of MG your husband has? This could determine why specific treatments are not working.
Suppose your husband has tried but not responded to Acetylcholinesterase inhibitors, prednisone, or other immunosuppressants. Other biologics for refractory MG they could try is eculizumab (Soliris®) for those AChR positive like Vyvgart is designed for.
Rituximab (Rituxan®) may be given to people with refractory MG who have muscle-specific kinase antibodies (MuSK).
Ravulizumab-cwvz (Ultomiris®) may be prescribed to adults with generalized MG who have anti-AChR antibodies.
- Jodi, Team Member
