• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Informal Survey re: IVIG

Gingergrrl

Senior Member
Messages
16,171
Do you have any info or sources or anything I can learn more about the dosing of IVIG? I see you say it's 1000-2000mg/kg vs 400-500mg/kg.

I can't remember how my doctors calculated the exact formula back in 2016 but I know that it was based on my body weight (at that time). IVIG for autoimmunity is a much higher dose than when it is used in immune deficiency.

Also what type of doctor treated you? A neurologist or rheumatologist?

My two doctors who I worked with for IVIG were an internist and an allergist/immunologist. Sadly both of them have now retired. We tried very hard to find a neuromuscular specialist (or any neuro) to help but ultimately did not find one and proceeded without a Neuro.
 
Messages
79
Location
Bucharest, Romania
Hello everyone,

I am starting to do SubQ IVIG for ME/CFS and MCAS, what premedication are you taking ?

My doctor "left a free hand", meaning to take what we find in studies.

Current Plan is to take this 1 hour before injection:
4mg Dexametazone
10mg Cetirizine
20mg Famotidine

After Injection later in the day:
10mg Cetirizine

Looking forward for your reply's.