IVIG: What a Family Needs to Know

In this video, Dr. Megan Curran of Cure JM's Clinical Care Network, gives an informative talk about IVIG. In this presentation, Dr. Curran gives an overview of the immune system, discusses what IVIG is, describes how it works, and then provides dosing recommendations, as well, as tips and tricks for using IVIG with JM patients.
0:00:00 Megan Curran, MD, What Is IVIG
0:00:45 Immune System Overview
0:06:06 IVIG Overview
0:10:33 How Do We Think IVIG Works?
0:13:14 IVIG Studies
0:19:29 IVIG Side Effects
0:23:19 IVIG Dosing Recommendations
0:25:41 IV vs. Subcutaneous (SubQ)
0:28:12 Tips and Tricks for Those Receiving IVIG
0:30:37 Cure JM Co-Founder Tom Hume Asks Panel to Introduce Themselves (James Sheets, CVS Pharmacy, Maddie Davis, JDMer, Who Switched from IVIG to SubQ, Michelle Vogel, CSI Pharmacy, Colleen Marchetta)
0:34:48 Questions from the Audience
0:34:49 Can You Do IVIG If Your Child Has High Platelets?
0:36:53 Is There a Connection Between Plasma Collection and the IVIG Shortage?
0:38:47 What Is Causing the Current IVIG Shortage?
0:41:43 SuqQ Overview
0:43:17 Maddie Davis Demonstrates SubQ, Narrated by a Nurse from CSI Pharmacy
0:57:31 How Does the Cost of SubQ Compare to the Cost of IVIG?
0:59:48 Is Thrombosis a Risk for SubQ?
1:01:08 Are There Insurance Issues Switching from SubQ to IVIG or Vice Versa?
1:03:15 Differences Between Receiving SubQ/IVIG In-Patient or At-Home?
1:05:15 Does Maddie Switch Out Syringes?
1:05:36 Are There Many Reports of Adverse Reactions During Home Infusions?
1:07:41 If You Have Bad Side Effects to IVIG, Will You Have the Same Side Effects with SubQ?
1:09:03 Any Tips on How to Talk to You Doctor About Switching from IVIG to SubQ?
1:10:44 What Are the Differences In Dosage/Dosage Over Time Between IVIG and SubQ?
1:11:39 What Are Minimum/Maximum Number of Injection Sites for SubQ?
1:12:30 Are There Relevant, Ongoing Clinical Trials for SubQ?
1:13:16 Do the SubQ Injection Sites Leave Visible Marks?
1:13:59 For Reference, Is the SubQ Injection Needle Similar in Size to an Acupuncture Needle?
1:14:36 Do We Know of Any Risks Associated with the Use of Long-Term Usage of IVIG?

[@freecat1278]

Very much appreciated. I received very little education about my illness. I'm looking to hire an advocate to sort out the disgraceful situation between my various providers. This presentation has made me more optimistic.

[@freecat1278]

@Evan Hodge That's part of it. The entire neurology department is completely ignorant of how IVIG therapy should be done for my illness. The department head admitted this to me. They refuse to adjust the dose when it stops working, so I just told them to stop. He thinks the pain relief is some odd side effect; he has no understanding of how it works. The immunologist is at another facility & can't access my records. The hospital ignores all of her orders for labs & prescriptions. When I called, the supervisor answered. She didn't know who I was & she couldn't access her own records because the facility swapped her cell phone. I get no pain management & all I know about my illness is what I learn in these videos. I had one of the best doctors in the country before they shut down the Gulf War clinic. I think they want us all dead.

[@maskermedismccons3090]

Thank you for information about ivig , from Indonesia Jojo

[@mommyhobbs48]

I have gotten lots of lumps in my belly from Sub Q. I am doing IVIG for a few months to let them heal.

[@CureJMFoundation]

We're so sorry to hear, Leslie. Please keep us posted on how you are doing!

[@sashahempsall9901]

What is the recovery for subcutaneous IVIG

[@Inkatown-six]

What if you noticed small blood in the end of the line when you inserted?

[@Inkatown-six]

Thank you, you answered my question.

[@thagrintch]

Can you be eligible for IVIG if you have good IgG values but extremely low B cell values?

[@kristinwallace6551]

As far as I know, no. But you would have to talk with an immunologist to be sure. All the best. (I am not a doc just a patient with common variable Immunodeficiency who is on IVIG for life)

[@mommysandra4576]

My daughter is starting IVIG monthly doses Should we get a port put in?

[@FBlibirisi]

Hi! How's treatment is going ? Is there any side effects ?

[@tnicolle41]

My daughter, 8 yrs old is starting ivig and we have so many questions. How does and when can she function normally in life.. Did they put ports in to ease hooking up for home treatment?

[@lilysacco3408]

@@tnicolle41 hi I’m 17 and I do ivig and I have a port! It’s a lot to get all that medicine through a regular iv I struggled with it that way. With a port it’s much better!

[@dalenesbitt]

@@lilysacco3408 how much does a port get in the way of everyday life? Can you go swimming?

[@TheWiesle]

Informed consent is the law, however IVIG has way LESS side affects than the COVID JAB, and no one was given informed consent of 9 pages of adverse reactions before they were given the JAB. Because if they did receive 9 pages of possible side affects no one would have accepted the JAB