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IVIG- Has anyone transitioned to sub cutaneous immunoglobulin treatment?
I truly credit how well I manage with my LEMS diagnosis to my monthly round of IVIG infusions. Having my treatment delayed during the start of the IVIG shortage last summer was truly eye opening for me. My symptoms got exponentially worse. However, I would like the highs and lows of my energy levels to stabilize in a way that my 4 week rotation of treatment doesn’t allow. I’m NOT ready to go to a 3 week rotation. So, I’m hoping my insurance approves my doctors request for me to transition to sub cutaneous infusions. These would allow me to treat myself at home, weekly, and keep my donated antibody levels at a constant. I know of one other LEMS patient who successfully transitioned and loved it. How about you? Has anyone here transitioned to sub q immunoglobulin treatment?
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4 Replies
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Hi Dawn,
Thank you for your warm welcome! I’m Dutch, but living in Switzerland for over 30 years. I was diagnosed with LEMS in October 2018. Looking for information, I searched the web in Dutch, German, French and English and I really want to thank you and the other people behind Lambert-Eaton News because it’s the most complete and up to date information I’ve found.
I started Firdapse in December 2018, which worked very well in the beginning, but the effective duration decreased. In May 2019 I started IVIG. I think the protocol here is different from the US. It’s devided over 5 days in a row, every 4 weeks. I felt the difference immediately. The effective duration of Firdapse was prolonged again in the first 2 weeks, but decreased in week 3. I started sub cutaneous immunoglobulin treatment 7 weeks ago, 2 times a week (as the volume is to big for once a week). I am SO happy about it! It takes about 1.5 hours each time, it’s easy to handle, you can do stuff in and around the house, no trips to the hospital (in my case 50 kms away, so 500 kms for 5 days…) and the level of immunoglobulins stays steady, which is a big difference in my energy- and muscle force level. It allows you to travel (with IVIG I had to plan my trips long ahead, because of my appointments in the hospital) as the pump is very small. Mine came with a medical certificate/travelling form. It allows to take the pump, the bottles with immunoglobulins, syringes, needles, etc. as cabin luggage.
For me, sub cutaneous immunoglobulin treatment is a huge increase in life quality!
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No. but I appreciate the information!
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Hello Sandra,
Thank you for joining our Forums! Also, thank you for your compliments on the Lambert-Eaton News site. It means a lot! We are starting a large endeavor to improve the overall site experience for all of our sites here at BioNews so keep watching for great things to come! We were just meeting over the last week in Philadelphia in regards to this new initiative, which is why my response is delayed. I do apologize.
Thank you SO much for your feedback about transitioning to sub q. I just received approval from my insurance company to start sub q treatments! Like you, I needed IVIG treatments every 4th week for multiple days in the infusion center, which meant my entire life needed to be scheduled around it. Next week will be my last IVIG infusion, hopefully, before I start training with a nurse on how to self-infuse at home. I am so excited- especially after reading about your experience!
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And we appreciate you and all you do to make awareness of Rare Disease, Romy!
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