Any side effects of long term IVIG treatment?
I am now 53 years old. I got diagnosed with Thymoma in Dec 2020. Had surgery in February 2021. After surgery, in April 2021 I started slurry speech and difficulty swallowing and after 2 visits to ER I got diagnosed with MG. It was MG crisis. I did not respond to mestinon nor prednisone. My neurologist started IVIG in July 2021 every 4 weeks for 2 days in a row, in addition to prednisone 20 mg. We then tapered it down until January 2022 I was off of prednisone and wanted to return to work as Radiology technologist. My workplace mandated the booster. I took the booster, went to work and 6 weeks after I had exacerbation of MG in March 2022. I am back on Prednisone and IVIG every 3 weeks for 2 days in a row. I am not sure how r u many years I will be on this treatment which I am benefiting from. It makes me feel tired for few days though.
Hey there! I just wanted to check in and see how you've been doing lately. I remember you mentioning a couple of months back the challenges with your muscular pain and the treatments you've been going through. I hope things have improved a bit since we last heard from you. Have you noticed any changes with your physical therapy or the IVIG treatment? Are you still on prednisone? We’d love to hear more about how you’re managing everything and any new goals or interests you have for this year. 😀
Jodi, Team Memberthanks for following up. My neurologist changed my IVIg treatment from every 4 weeks to every 5 weeks. I started having mild symptoms of MG like weakness in my tongue when chewing. I started taking mestinon 30 minutes before eating. My muscular overall body pain is the same and it worsens with repetitive movements. I’m looking forward to starting a new session with PT to strengthen my muscles overall. It’s been challenging every day to deal with pain, feeling tiredness and weakness. I can’t imagine without IVIg. It would be miserable. I don’t take prednisone now. But I took for about 2 years. Prednisone helped with my muscular pain back then. Praying for remission one day.
MG friends, stay strong. 💪🏻
Second day after this month's treatment--I had to give myself a little "dope slap" today when I found myself asking hubby if he was going to stay in that chair watching Gun Smoke all day. Yes, it is the results of the IVIG. He has been on it 2 years, and YES it is "slow but steady wins the race." Juliana (team member.)
