IVIG Infusion

[Dermatray15]

Has anyone had the IVIG infusion? If so, what was it like? Did it help?

[Mooka]

Yes I had it every three weeks for six months. I now self inject weekly. Allow yourself plenty of time especially for the first one. They will do your obs and ask plenty of questions. The cannula goes in a vein usually I’m the crook of your arm and it will be administered very slowly In case of any side effects. I had backache and headache but they will give you paracetamol. Subsequent i fusions go in a bit quicker but if you have any side effects they will slow down again. I have it as my ig levels were very low and my levels went back to normal within a few months. I hope it helps you.

[crashdoll]

I have. I usually only have it when I’m going dangerously downhill.

You need to drink lots of water, starting the day before - if possible - as it prevents a headache.

[madonbrew]

Do you guys have asthma caused by IG deficiencies? I’m just asking as I have a rare autoimmune disease called IgG4 systemic disease...which has caused me to get chronic pancreatitis and chronic kidney failure and in the past my liver, bile ducts and gall bladder have been affected too. I’m also now an insulin dependent diabetic secondary to the pancreatitis .

But I’m wondering if my asthma is caused by it or a similar IG deficiency?

[Dermatray15 in reply to madonbrew]

I have Dermatomyositis an autoimmune muscle disease and Raynaud’s disease. The Dermatomyositis has affected my lungs.

[madonbrew in reply to Dermatray15]

Thank you for answering. Wow, that sounds quite a rare disease too? It’s interesting how many different illnesses/diseases affect our organs isn’t it!

I really hope the infusion helps you!

I have Rituximab infusions for my IgG4 thing but my consultant always wondered if it might help with my asthma a bit too. Not sure it does particularly!

Dee

[Mooka in reply to madonbrew]

I don’t have asthma. I have a rare autoimmune disease called vasculitis. I had rituximab to treat this. It’s purpose is to damp down the immune system. In my case it left me low on immunoglobulin levels so I’m likely to have to have ig indefinitely. I also have Bronchiectasis caused partly by the vasculitis and partly all the chest infections I’ve had.