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IVIG experiences
IVIG can look so different depending on how and where you receive it, and I feel like those details don’t get talked about enough. For me, my first experience was a five day round right after I was diagnosed, done at home with a nurse coming in. Honestly, it was pretty traumatic. She wasn’t very confident placing the IV, there were multiple attempts, and I ended up getting really sick during it. It just didn’t feel like a smooth or supported experience, and it’s always made me wonder how different it might have been in another setting or with a more experienced team. I’d really love to hear what it’s been like for others.
- Where do you receive your IVIG (at home, infusion center, or hospital), and have you noticed a difference in the experience or level of care?
- What is your infusion schedule and rate, and have you had to adjust?
- Do you notice symptoms returning before your next dose, and if so, how far in advance do you start to feel it?
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3 Replies
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I have had several different experiences with IVIG. My first was at home over 4 days. The nurse was inexperienced at changing the infusion rates so was very cautious and it took over 6 hours each day. The next several times were at home with a much better nurse and it went smoothly and no issues. It took about 4 hours each infusion. It seemed to be keeping things in check but my neurologist (who is no longer my neurologist) convinced me that IVIG was “old school” and I should try something new. 4 days after I started the new medication I became ill and ended up in crisis and was in the hospital about 40 days in 3 months. They started me back on IVIG in the hospital and I am back to getting infusions every 4 weeks at home. It doesn’t get rid of all my symptoms but it definitely helps better than anything else helps me. I would say I feel it wearing off around the beginning to middle of the third week. I think the person administering the infusion makes more of a difference than where you receive it (although I definitely prefer being at home).
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I have been on IVIG infusions for 7 years, once every 5-6 weeks. It helps. I have been extremely fortunate to have only 2 infusion nurses that are outstanding, the first for 6 years. Having the infusions at home with only a handbag type bag containing the fluids, pump and tubing (no I.V. pole) allows me to move about the house; watch tv in one room, work on the computer in another, grab a snack in the kitchen…almost everything I normally do. From start to finish usually takes 5-6 hours. Keeping hydrated helps finding the vein. My only complaint is that about every 30-45 minutes the nurse interrupts what I am doing to take my temperature, blood pressure, make certain I’m keeping hydrated and determines if I’m feeling okay. What a problem, eh? I can only hope that any of you receiving I.V. treatments find the same satisfaction.
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Thankyou for your response.
Right after my post, I was in hospital but now out. I learned so much I will share with group soon
Richard
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