Anyone on Ivig?

[weegiemum]

I have monthly Intravenous Immunoglobulins for CIDP, a demyelinating polyneuropathy which is autoimmune. Just wondered if anyone else has had this treatment?

No, but my dad had it for his AI, and I know that it is only used in very special cases as it's very expensive - how many have you had? Do you feel any different for having had it? Dad's was constant for a few days, and then that was it - have they said what the impact is supposed to be?

Just thought I'd answer as it can be a bit lonely with these things.. sorry if I'm not much use.

My mum has acquired immunodeficiency (AID) and has weekly subcutaneous infusions at home that DSIS and I take turns to do.

If you do Facebook have a look at UK PID Patients

Hi, my husband had it 3.5 years ago when he was diagnosed with GBS. It seemed to really help. Have you looked at the GAIN website/facebook page (www.gaincharity.org.uk / www.facebook.com/gaincharity) - its a great forum and I suspect many have experienced IVIG. goo luck - I hope it helps.

• Good luck

Thanks folks.

I don't now how many I've had, it was 4 weekly now 5 weekly for the last 5 years. Its an expensive treatment but I get such a boost from it I'm delighted I'm allowed it!

I'm a member of GAIN - cidp is the chronic version of GBS, you don't recover really, you live with it.

My hospital currently doesn't provide SCIg so its a day on the ward or nothing. I think SC might give a more even result rather than the up and down of ivig but just not available, even though dh is a doc and could administer it no bother.

Nice to know I'm not alone on here!

DD 11 Emmanuel Syndrome requires weekly subcutaneous infusions done by me. She is very good despite having learning disabilities. She has been on these infusions for nearly 6 years and she does stay fairly healthy apart from her gut, frequently exploding colostomy bag. Life is fun.