Plasmapheresis and IVIG
I was 91 years when I was diagnosed with MG. Since then I have been treated with the usual oral meds including prednisone, mestinon, mycophenolate mofetil and infusions of Soliris and currently Ultamaris. My early symptoms of fatigue, generalized muscle weakness have increased . I am more weak, I have a very bothersome head drop, speech and swallowing difficulties.
So far I havenot experienced any crisis. I see a neurologist every 6 months in follow-up. He is encouraging and advises physical therapy and exercise. I keep wondering whether the Ultamaris , which is ridiculously expensive is helping? He has never considered Vivgard?
Carl
I am 83 and had my droopy head on my chest for 6 months and was treated at VA Loma Linda in rehab. My crisis came may 21 2018 with 3 weeks in ICU and another 2 weeks in hospital and another 2 weeks in rehab. I came home and had drinks with friends without a walker.
Since then I’ve gone steadily downhill with no up periods. I’ve been on every approved drug (4), IV/IG, and recently a round of plasmapherisis. That took 5 days in Eisenhower hospital. It’s also painful getting the needles in. I’m currently on a drug made for LEMS and concurrently IV/IG which I’ll stick with for three months since I’m bedridden (just got a scooter) and I have a great caretaker 5 days a week. My doctor is the best in the Palm Springs area and has 30+ patients for MG. He’s aggressive with treatment and I listen to him.
Being 83 I can’t tell the dNo. They we’re treating it as a strength issue. It was only after a conference about my condition that the head neurologist called me and said to go directly to Eisenhower emergency and say that MG was suspected. They gave me a simple neck brace.
I do plasma pheresis every three weeks and it is wonderful. Changed my life. I feel "normal" again. For a variety of reasons, I have not been able to take any of the standard medications. I started pheresis at 6 weeks, then went to 5. I have found my
"sweet spot" at 3 weeks. I would encouraged you to talk with your neurologist about it.
so glad to hear you have found this beneficial for you! How wonderful it must be to feel some normalcy again! Again, so happy for you! We appreciate you being here and sharing with us. Wishing you continued wellness. Hugs, Jessica (Team Member) I had plasmapherisis recently as I’ve tried almost every other treatment. I was in Eisenhower hospital for FIVE DAYS. It was painful and the TV small. I’ll never do it again. Five days of treatment every three weeks?
Carl, I'm glad you are receiving the proper medications and that they are working well for you. I too am on most of the drugs you mentioned. I have experience every symptom that is described, what could happen did happen, even an MG Crisis. I was in the hospital 4 months, respiratory, I stopped breathing. Praise the Lord, He brought me through it. God bless you, Carl, hang in there, I'll be praying for you.
Hi
Carl, glad to hear you have not experienced a crisis. If we can ever help locate any info related to MG, please reach out. Are you considering physical therapy as your physician has advised? I shared an article on the topic, just in case it may be of interest - https://myasthenia-gravis.com/physical-occupational-speech-therapy. Have you asked your doctor about the medications and your options? In the meantime, I included general information on Vyvgart - https://myasthenia-gravis.com/news/efgartigimod-fda-approval. I also shared an article on treatment options - https://myasthenia-gravis.com/treatment. Wishing you well. -Jessica (Team Member)
