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Anyone on Ivig?

(8 Posts)
weegiemum Tue 02-May-17 11:48:53

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

lborgia Wed 17-May-17 08:26:16

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.

Penfold007 Wed 17-May-17 08:31:29

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

Penfold007 Wed 17-May-17 08:35:11

If you do Facebook have a look at UK PID Patients

mouse12 Sat 27-May-17 18:52:35

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 ( / - its a great forum and I suspect many have experienced IVIG. goo luck - I hope it helps.

mouse12 Sat 27-May-17 18:53:12

* Good luck

weegiemum Tue 06-Jun-17 12:45:33

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!

2old2beamum Tue 06-Jun-17 20:39:24

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 bagshock. Life is fun.

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