Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone
Hi everyone, Can anyone tell me what it's like to get Ivig? Any prep that was done? What's the procedure like? Side effects? Recovery time? How often people had treatments? Any information would be appreciated!
Welcome to the group! Many folks here have had IVIG and some have done very well with it and others had problems. Generally if it works, it is in a few days and lasts for 3-6 weeks.
I haven't had used it.
You can search this forum for many IVIG experiences by clicking this link
https://www.google.com/search?q=IVIG+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org&rlz=1C1CHBF_enUS812US812&oq=IVIG+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org&aqs=chrome..69i57.14006j1j4&sourceid=chrome&ie=UTF-8
There are several discussions about preparations and speed of infusion that say most of the problems with the infusion can be fixed if the IVIG administration is done right. So my advice is to do it at a large institution where the folks are experienced in doing it.
Good Luck
Russ
getting ivg treatment is like any other treatment. you an the neuro will have an extended conversation on which was you are expexting from it, benefits. side effects, ect.
generaly speaking they are from my part no side effects, i went thru it twice, one in 2011 when i got mg, and the last one was 5 1/2 years later 11/2018 wher i wnet in full realapse,
i am finishing my treament which to be done right take about a year,
now i am in full remisssion since july, generaly speakning you will see betterment in bout 2 to 3 days from start, duration of benifit can be anywhere from months to years, depending on your body reaction.
it can take year to to fall into relapse, from my part i was ok, for allmost 6 yrs, and if the degree of my stress would have been controled i may have gone farter
now tha i am in full remission, total control of my streess and emotions i know that i will go without untill hopefully my lasts days
i am 79 yrs old, and douing great, will not aloww my emotions stress, excertions to get to my again
as far the treatments will take you is dependent how you react to all factors that i mentioned and the goos control of properly taken your meds with help of your neuro., and also where you stand with your mg classification
so dont be leary in regard of this treatment, it will work to your benefit, some people may disagree, with me, but the facts reamain. and all is dependent of how you proceed mg, is not an easy disease to control, but i beleive that if i can do, so thus anybody else.
best of luck and happy hollidays to all (fighter)