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How do IVIG/PLEX/Infusions affect your summer plans?
If you receive regular IV or infusion treatments, it can be hard to plan summer activities around them.
Have IVIG, PLEX, or infusion treatments limited your ability to enjoy or participate in summer plans?
Do you have a method that works for you to balance treatment with rest and fun?
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6 Replies
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Got my first IVIG infusions last Tuesday and Wednesday…I have 2 day infusions booked every month for the next twelve months from the hospital neurologist. Don’t know if that will change after I see another neurologist in September. So far went great, nurses were great…
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Thanks for sharing, Greg! Sounds like a big step forward, and we’re glad to hear your first round went smoothly and the nurses were great. Hopefully the new neurologist in September brings some clarity or helpful updates. -Jodi, Patient Advocate
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My journey with MG has impacted every aspect of my since my diagnosis and first crash in 2014. We’ve worked through so many trial and bust and we have finally arrived at combination of daily prednisolone, and biweekly Apheresis treatments followed by a Soliris infusion. So, our vacations a are scheduled around these regimen and can be limited to be tied to the 14-day leash. But the alternative is more crashes with every other treatment we tried and we have just learned to be creative in our planning. We live with a “big” mentality; it’s not that I’ve got to have a treatment every two weeks but more that we get to do so much because we have found a treatment regimen that keeps my gMG at bay so I can enjoy life!
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Douglas, thank you for sharing such an honest and powerful glimpse into what it takes to keep moving forward with MG. That big mentality you mentioned is powerful, it’s not about what we have to do, but what we get to do because of these treatments that help us keep living. -Jodi, Patient Advocate
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As we all know who take these drugs we have to plan around them. I’m leaving on vacation after my 4 week Vyvgart stint. The pills I take are easy. They come with me. I’m trying to get the shots that I can do myself. Now that would truly make me independent.
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IVIG infusions have been returned my hope and a lot of my health. I still have fatigue a lot. But I now have the breathing capacity to push ahead. I am infused every 6 to 7 weeks for 4 hours. I begin to feel the effect fade in the summer heat about 5.5 to 6 weeks and supplement with Mestinon.
I am 71 years old and was diagnosed in 2015 with a thymic tumor. Removed. Organ contained though very large, it left its lasting impact of gMG.
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