Lambert-Eaton News Forums Forums Treating LEMS IVIG and Plasmapheresis Gearing up to start home infusions!

  • Gearing up to start home infusions!

    Posted by Ashley on January 10, 2023 at 11:12 am

    Good morning all! 

    This week is the week I’ve been waiting for- my first in-home IVIG infusion.

    This is really exciting for me because I’ve been going to an infusion center for my IVIG since 2016.

    I think this is going to be a good change for me as it will make my infusions more comfortable and easier. I now won’t have to make a 30-minute commute to the infusion center. I am also looking forward to having my couch to relax on because the chairs at the center aren’t too comfortable, especially after sitting in them for five hours… of course, I am excited about the unlimited amount of snacks I have at my home. 

    So far, the transition process has been a little bit stressful and there have been some miscommunications along the way.

    I was close with all of the nurses at the infusion center and will miss them though. I hope I’m able to have the same nurse each month and that it will be an easy transition. 

    For those of you who already do home infusions, what was the hardest part of transitioning to home for you?

    Do you have any tips to share on switching to home infusions?

    sandra-gunther replied 1 year, 3 months ago 3 Members · 3 Replies
  • 3 Replies
  • wanda-grischkowsky

    Member
    January 10, 2023 at 6:56 pm

    That’s great news. It would be nice to get in-home infusions instead of being at the infusion center for 8 hours due to slow rate. It helps to have a comfortable chair as well as plenty of snacks and drinks, but the two days are very long.

  • desiree-taliancich

    Member
    January 12, 2023 at 10:42 pm

    Ms Ashley!! Congratulations! I am 2 weeks into my SQIG at home and so far it has been amazing! Easy to do, infusion takes 1hr 45min, steady week with no highs then lows right before treatment. I am very pleased thusfar. I use to get terrible headaches with my infusions so I had to avoid bending over, no exercise, no sun, etc. I don’t anticipate having to limit myself at all with SQ treatment. The literature states you should start SQ 1 week after IVIG. I personally did it 5 days after because I wanted to do it on Sundays. I’m not sure I have identified a hard part about the switch. The infusion company we are using is awesome! I just received 1 month of supplies including IG so I’m all set. Please reach out if I can help with anything.

  • sandra-gunther

    Member
    January 15, 2023 at 9:27 am

    Hello Ashley! I’m very happy for you that you could start with your in-home SCIG this week. I started IVIG in the hospital, 50 km from my home, in May 2019. I had to go 5 days in a row every 4 weeks, which was extremely time consuming. The first week after IVIG I felt really good, the second week was also ok, but afterwards my symptoms were getting worse, especially in the morning. Now I do my SCIG 2 times a week (2 times 15 grams a week, 120 grams IG per 4 weeks), which gives me a very stable amount of IG and makes that I can get up in the morning without to much weakness. The first 3 times I was instructed by a nurse, since then I do it myself. It takes 1.5 hours and I can choose a moment that suits me. I also travelled with all the material without a single problem at the airport. I order all the stuff online and it is delivered the next day. I found out that I am less sensitive to put in the needles in my belly (in my case 4 needles at a time) in the morning or afternoon than in the evening. My skin supports it very well.
    I find it extremely convienent and hope to never have go back to IVIG in the hospital.
    I wish for you that it will work out for you, too!
    Best regards from Switzerland.

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