Intravenous immunoglobulin treatment (IVIG)
Intravenous immunoglobulin (IVIG) is a treatment option for many people with autoimmune diseases. IVIG can be a treatment for myasthenia gravis (MG).
Have you ever gotten IVIG before? If so, how did you react to it? If you have not received IVIG, please share your thoughts on this treatment and if any other treatments typically work for you.
I. Received IVIG, IT WORKED FOR A WHILE BUT THEN I HAD SIDE EFFECTS OF RASHES. NOW I'M ON RESTIGGO, IT DOES WORK. DON'T GET OVER STRESSED ABOUT THINGS. I WENT Very BACK WHEN MY FATHER PASSED. LEAN ON FRIENDS AND FAMILY. STRESS IS DEFINITELY YOUR ENEMY, AT LEAST FOR ME.
I had blood clots in my lungs after the third treatment. Not much fun. No more IvIG.
I am so deeply sorry you experienced that. You mentioned in a comment on another post that you are back to square one. Is IVIG the only MG treatment you have tried so far? Has your doctor discussed any other treatments with you?
Jodi, Team Member
I received IVIG one time as a result of Myasthenic crisis. It was effective, however it made me extremely ill. I was very nauseous and could not hold food down for a couple of days. Shortly after I was changed to receiving plasma exchange which was much better tolerated.
sorry to hear you had such a rough experience, but glad it did help with the crisis. How have you been managing lately? Please know we're here anytime. -Jessica (Team Member) Hey! It's great to hear from you after a few months. I am sorry to hear that your body, although it responded well to the IVIG, the side effects were unfortunate. I am glad that plasma exchange was a better fit for you. If you feel up to sharing your IVIG experience in the following discussion, https://myasthenia-gravis.com/forums/ivig-side-effects, I am sure it will help others feel less alone or help some decide if IVIG is something they want to try. Specifically, mentioning that PLEX worked even when you became ill after IVIG may give people who experienced some direction or hope.
Jodi, Team Member
I used to get IVIG every month for about 18 month due to refractive MG (including triple doses after a crisis and two distresses). In 60% of the infusions I would go into a fevered shock and they would have to slow it down (about 6-7 hours) on rare occasions, it went well they would finish in 4-5 hours and once in 3.5. During the whole period I had bad joint pains and muscle weakness (possibly due to psioratic arthritis) after cyclo treatment I went into remission and my IVIG infusions stopped, that has been holding for the last 9 months.
It's good to hear from you! It's been a while. I am thrilled to hear you are currently in remission! If your MG ever did flare again, would you try IVIG again or be in favor of a different treatment?
Jodi, Team MemberI would probably go with the IVIG as that is the only remedy I am aware of. Although when I did have the crisis, I was on IVIG for about 6 month. So I have reservations about its effectiveness, in the doses prescribed. The times I did get a triple dose ( after the respiratory distresses and the respiratory failure), it was extremely effective, even clearing up my psoriaosis.
