Mysthenia with IVIGG
Has anyone receiving ivigg treatments noticed that several weeks later, severe shortness of breath? I have had GMG since 2014. Had malignant thymus gland removed in 2016. Take mestinon and imuran at present time. Have been receiving ivigg last couple of years every 6 weeks over 3 days. Have begun to notice last 3 to 4 treatments, that after 2 weeks or so, I become extremely short of breath. To the point of 02 sat being in the 70s and 80s. Anyone else taking ivigg and, having any side effects they would share, I would be grateful. Thank you.
I haven't had IVIGG in years, since I'm on mycophenolate now, but I'm concerned about your heartrate being in the 20s or 30s. Have you been checked by a cardiologist just to be sure it isn't a medication side effect?
Last March, my heartrate got down into the 20s. Turns out I needed a pacemaker. Not only did I have CHF (congestive heart failure), but Afib as well. Both heart disease & MG can cause all the same symptoms you mentioned. I had no pain, but was headed to having a stroke due to the Afib &/or coding due to the bradycardia. Since my pacemaker, I've rarely had to use my inhaler (for asthma) & shortness of breath (SOB) is gone.
I'd just feel better if you have it checked, especially if you've ever taken prednisone for any length of time, regardless your age.
Best wishes! - Janice (Myasthenia-Gravis.com Team)Thanks so much for everyone's response. I have spoken to my Dr., didn't get much of a response. Love this forum. Hang in there everyone.
I also get IVIG and notice shortness of breath a couple of weeks later. For me, this is usually a sign that the IVIG has worn off and I need the next dose
Hello
I've been doing IVIG (gammagard) treatments for a few years (most recent being last week) now and I get pretty bad side effects. The first time I had IVIG my blood count dropped significantly. That caused me to switch to gammagard. There are different forms of IVIG that can be administrated. Have you talked to your care team about this side effect?
Side effects that I experience are severe headache, lower back pain, stomach pain, and overall tiredness. My heart rate tends to drop as well. A normal RHR for someone my age (29yr; female) is 60-70bpm mine on the other hand is between 30-50bpm my lowest being in the 20's which caused quite a scare for the hospital staff.
Definitely notify your doctor. Sending positivity your way. - Jazmin (MG team member)
