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Soliris (Eculizumab) and MG
A study was published last month in Muscle & Nerve, written by Joome Suh MD, Virginia Clarke RN, Anthony A. Amato MD, Amanda C. Guidon MD MPH. The study discovered results backing that Soliris (eculizumab) effectively led to clinical benefits in people with generalized Myasthenia gravis and are anti-acetylcholine receptor antibody positive.
Have you ever received Soliris infusions? How did your body respond? Did you undergo any side effects?
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10 Replies
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I’ve been on it since July 2019. It worked wonders for me. I went from using a Walker to hiking and even ran my first 5K!
The downside is the every two week schedule. I was unable to travel, although so was the rest of the world due to COVID. And I do have restless legs syndrome side affect.
I’m switching to Ultamiris this next infusion. Simply because I will be able to go every two months after the two load doses. This is huge for me as I love to travel.
For those that haven’t tried Soliris I highly recommend it!
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I have been receiving Soliris for 2 1/2 years. After Plasmapheresis failed to keep my MG under control I was put on IVIG until I transitioned to Soliris. I experienced extreme fatigue with IVIG but that gradually faded away with the use of Soliris. I have been stable now for over two years with no complications or symptoms other than some slight double vision with my head in certain position. I have had no side effects whatsoever. The dosing instructions recommend an hour wait after the end of infusion but after no ill effects after two infusions that went by the wayside. The infusion takes 35 minutes and sometimes I have to waiter longer for the pharmacy to mix the infusion than the actual infusion takes.
I will be transitioning to Ultomiris perhaps as soon as next week. Changing to an eight week infusion schedule will be a welcome change. While there may be no ultimate victory against MG with Soliris I have been able to maintain a close to normal lifestyle.
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I receive Soliris infusions every other week…it is MUCH better than 4 hours of IVIG 8 times a month! Results about the same but I have my 8 days per month of my life back!
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I Started Soliris in 2019. It gave me my life back. Before Soliris I had weakness in arms ,neck ,Hands, Jaw, swallowing, lungs and double vision. I did ivig 2 times a month and took 700mg of mestinon per day. Now the only weakness is very little in my facial muscles. Good luck.
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After the second infusion of Soliris I put my walker away. Two days later my wife took me to the hospital where I was diagnosed with a Neisseria sicca endocarditis that had begun to establish a colony on a mitral valve which had been replaced two years prior.
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I started the use of Soliris in April 2021. I could not drive my car before starting Soliris due to the loss of my binocular vision. By the second infusion, my sight was back to normal. Swallowing is normal again, and I am not struggling to chew my food as I had before. The only thing that would throw my vision out whilst on Soliris was exposure to high ambient temperatures so that in the summer I have learnt to stay in air-conditioned locations, meaning little or no outdoor activities. Two weeks ago, I had my last Soliris infusion. This week I received my first Ultomiris infusion (July 2022), so far it has been a seamless transition, given every 8 weeks rather than every two weeks with Soliris. Fewer jabs in my arms, and the prospect of extended visits to family and friends domestically and overseas. I feel very fortunate to have been able to have had Soliris infusions.
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I have been on Soliris for a little over 3 years. I get a little flu achy once in awhile. Otherwise, no side effects. The every two week schedule is a little prohibitive, but it works well enough that I am staying on it. I am seronegative and afraid to rock the boat trying to get on something else. I am afraid the insurance company will realize I am seronegative and stop allowing me to have Soliris.
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I have been on Soliris since September 2021. The initial benefit was fair to good. In May I experienced a major boost in energy and stamina. I am out walking almost every morning. That seemed impossible just a month before. I had also joined Noom, and have lost over 40 pounds. The every two weeks has not been a problem for me. I know from the people at church that prayer has been a major component of my recovery as well.
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I began Soliris therapy in Jan.2021 Previous therapy included plasmapherisis, IVIg, Cellcept, Mestinon. Soliris works for me No side effects to speak of.. Fatigue maybe 2or3 days after infusion. 35 minutes and you’re done. Takes longer for Rx to formulate than it takes for treatment.. Every 2 weeks is a pain, but so is MG. Everyone be well.
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Hi everyone I have been on soliris for all most 3 years and in the beginning I had some side effects like my neck ached so bad for the longest time I almost went off it but, finally it went away. (though I do have to say that I react to all most everything ) I have been doing great on it so far. Have been thinking about Ultomiris because of just 8 weeks tx. not every 2 weeks. But my doctor really wants me on Vyvgart they were in the study phase for that. I’m a little scare of that for it’s once a week for 4 weeks and then not again until symptoms appear. Which if I’m traveling what happens then? Has anyone taken Vyvgart? please let me know and how did you like it?
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Yes i was on Soliris for about 2 years but wasnt getting the results like i needed. I switched to vyvagrat about 7 weeks ago. I really havent seen any changes but havent had any bad things either. My case worker said that some times it takes the second round to see results. 63% first round 83% second. I have a retired icu nurse for a wife and both sons are Bio tech reps so i am being closly monitored. You can take the second round in 50 days from the first 4 weeks starting from first week so really about 30 days from first day. If it works that will be great or stays the same better than infusions every 2 weeks.
I tested positive for Covid Friday had bad night that night but doing better now. I had all 4 shots plus anything else my wife and sons thought i should take😀. Sometimes having all these medical people isnt that great. They all want me to let them know before i get to bad so we can go to the hospital. I told them its like getting the breath knocked out of you if it ever happens you dont want it again this was my case with Mg when i first got it. One main thing a lot of doctors arent up on the medicans that effect mg so you had better be pro active
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