IVIG

[VasculitisQueen]

Has anyone ever had IVIG therapy for their vasculitis. My igG levels are depleting pretty rapidly from having rituximab infusions every four months for the last three years, and they are significantly below the recommended level. Because of that, I continue to develop infections and have received almost a dozen courses of antibiotics in the last year. My doctors haven’t mentioned IVIG for a few years and I don’t have a consultation for another month, but Ive been doing some research on its successes and was looking for your opinions!

[Buckfast]

I had IVIG 2017 as my Wegners was causing major problems. Optic neuropathy and also mono neuritis multiplex. The IVIG was given over 2 days. I have to say it did make me feel pretty poor during the infusions but within hours of completing the second, things greatly improved. Remission was not achieved (fingers crossed) until Dec 18, but the IVIG certainly seemed to be a major contributory factor, together with the great care from Addenbrookes.

[Sarahjh2004]

Hi

My levels are 0 without it. I have a monthly infusion. I know that there is a national shortage St the moment.

[SusanCh]

I have ivig every month due to depletion as a result of many years of Rituximab & lots of infections. I cope ok & don’t have any side effects. I was doing subcutaneous ivig injections at home for over a year but struggled with this for various reasons so back on monthly infusions. Sue

[Mooka]

Hi VasculitisQueen

I started Ivig in December 2017 as my levels were low due to rituximab. I had it 3 weekly for 6 months and the went over to subcutaneous and have been told I will need it for the foreseeable future. It didn’t stop my infections as I have pseudomonas and ig doesn’t protect against that. I have nebulised abx which is controlling that. I haven’t had any immune suppression since February 2017 and am completely off steroids since December last year. So although I don’t have ig for the Vasculitis I understand it is supposed to help keep at it bay.

You may need to push for an appointment with an immunologist though. Good luck it’s so miserable having constant infections on top of everything else.

[Slem2]

I've been on Retuximab for over 2 years now and have been getting monthly IVIG infusions for the past 6 months. I have no side effects from the infusions, except bruising from the IV (I bruise very easily).