Ivig Home Infusion: What to Expect

[@Isabella-nd3rq]

thank you so much - you are hilarious! i am about ten years down this road (sigh!) but wish I had seen a video like this before my first monthly infusion. I have CVID. I have gotten to know my nurses VERY WELL! :)

[@lucidmed3343]

Hi Isabella! Thanks for commenting and letting me know this helped you. This was one of the 1st video's I ever made and I've often thought about going back and updating them. I still may and comments like this make me think it might be time. I hope IVIG is working for you and wish you well. ❤❤ Danielle

[@Lotrfan1991]

Thank you for this!

[@925AMG]

Thank you!

[@lucidmed3343]

Hi and you are absolutely welcome!! Hope I was able to answer whatever questions you had 😊

[@BeadingAway1947]

I had the most horrific reaction to IVIG infusion in 2020. Burns and blisters all over my body. I have 2 incurable diseases bronchiectasis & hypogammaglobulinemia. Since my diseases have progressed rapidly in 2021 an oncologist recommended I try again under his supervision with Benadryl and prednisone… Another painful experience extreme headache, severe back pain, and so many more side effects. They have said there is no more they can do. I have been fighting since 2018 and now I am weak, very unwell and I have had back to back infections for 2 months straight. I am burning out. Do the research!!! Read everything because I did not. I wish I had but I trusted the doctor. Wrong decision on my end. I am full of scars. It did nothing to raise my IGG AT ALL. It did more damage. Be safe.

[@lucidmed3343]

Hi BeadingAway! I am incredibly sorry to hear that was your experience with IVIG. Of course I don't know all the facets of your specific clinical history, but what you're describing makes me wonder if your infusion was run too quickly or you had a reaction to a specific brand. Though, I'll admit the burns and blisters are not common and sound quite severe. We also give IV solumedrol and IV Benadryl which I'm assuming you had. Oral prednisone mehh not what I would use to cover with your history of adverse reactions. Anyway, yes viewers need to ask a ton of questions if IVIG is brought up as an option. Self advocacy is imperative :) Danielle

[@jphanks]

Which brand of IG did you try? Some have more IGG than others, same with IGA. No brands of IVIG are interchangeable!

[@BeadingAway1947]

@@jphanks Thank you for caring.🥹 This is from the first one in 2020. immune globulin (human) 10% in Solution Stopped 3/9/2020 immune globulin (human) 10% in Solution Stopped Benadryl and Tylenol as well They did push it so fast I was there about four hours. I went home and felt immediately sick. I broke out with a severe rash all over my entire body and it felt like I was burning from the inside out. I had to have the rash biopsied in my neck to confirm it was dyshidrotic eczema due to the IVIG infusion. Headache. Vomiting. I did do the treatment again in 2022. Same medications just a lot slower. Much more severe reaction this time. I won’t go through that ever again. Thank you again for your time🩵

[@gmcmurry]

After a few weeks of IVIG, I decided it is more comfortable to leave the catheter in but only just the "needle" part. No leader tube. Wrap it up with a loose layer of Cohesive Bandage and you can sleep comfortably. I do use 5" stretch wrap around my arm during morning shower. Keeps it dry and ready for the nurse to come in and start the next infusion.

[@lucidmed3343]

Hi my friend! I read one of your earlier comments again and thought to do another video on IVIG/infusion for you so I'm trying to think of the best topic...I could use your help if you're up for it? D

[@SandorLau]

Thank you so much for sharing. This is great education from an expert. Still a little confused about timing. 3-7 hours per normal session. How many sessions typically?

[@lucidmed3343]

Hi Sandor! Thanks for dropping in and commenting and thanks for the positive feedback. If it's a 1st lifetime dose then that is normally administered over 3-5 days (the pharmacist and your doc will figure this out). If it's maintenance dosing (ongoing after 1st dose) then you'll typically have a smaller dose which will be given over fewer days (average is 1-3). The timing can vary widely...several factors in play. The easiest way to calculate an approximate infusion length is we'll infuse 10 grams/hour for the average person. So 40 grams would take 4 hours. This is not taking into account any premeds, pre and post hydration, or if you have any issues during the cycle that cause the nurse to slow the rate down which would extend the duration. If this is still clear as mud feel free to email me and you can share your weight and I can figure it out for you. Danielle

[@lucidmed3343]

I had made the IVIG dosing deep dive video private for a while but have just made it public again so you can get a better idea of dosing. Here's the link :) kzbin.info/www/bejne/jpXbaGyBds6XoLs Danielle

[@SandorLau]

@@lucidmed3343 thank you so much for such a fast response.

[@eternidadcelestial1836]

Pon los subtitulado en español...

[@lucidmed3343]

Hola! trabajando en ello :) ❤❤ Danielle