Immunoglobulin Replacement

Is anyone on here having infusions/injections to replace low immunoglobulins? I've been advised by immunology at derriford hospital that I'm at risk of severe infections and need to start replacement treatment but I've been at the same igg level since 2013 with no problems. I'd like to hear of people's experiences on replacement therapy - good or bad - and whether anyone has experienced side effects. I have gpa and am treated with rituximab every six months. Thanks for your input! Charlotte

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  • I got the immunoglobulin infusion every 3 weeks for two years and in past few months i have moved onto Hyqvia. If you can go for the Hyqvia, its brilliant. No problems from either treatment and it has replaced my rituximab also as it covers both.

  • What is hyqvia?

  • I looked it up. It's an IVIG infusion that can be given under the skin ( subcutaneous ) as opposed to IV. It's only needed every month rather than weekly. It's certainly available in the USA, couldn't find whether it was licenced here.

  • Yes, Just had 4 days of infusions IVI Privigen 250mg/ml a day. As rutiximab treatment failed. No real side effects apart from a headache and have not really felt any beneficial effects. I think I am still in early days and need to wait a bit longer, definitely has not helped tiredness. But administration of it and today all seems fine and a clever idea?

  • I'm 63 and attend a great rheumatology lupus & vasculitis clinic for infant onset lupus of the vascular type. The diagnosis was recovered 6 years ago and immunosuppression begun (now am doing well on daily hydroxy + myco + pred + amitriptyline). My Ig G, A, M + lymphocytes have been below range since before immunosuppression began.

    2 years ago rheumatology referred me to immunology for investigations due to hypogammaglobulinaemia & lymphopenia. Immunology' investigations & monitoring continue, and do far we know I have ultra low pneumonia antibodies + make none in response to both types of pneumonia vaccine. So immunology has me on daily on the penicillin based antibiotic coamoxickav indefinitely, with the plan to put me on IVIG treatments if infections breakthrough the prophylactic coamoxi.

    I know several patients on daily I mmunosuppression meds and IVIG: they all are benefitting greatly. Like mine, their hypogammaglobulinaemia began before immunosuppressiin. 1 of these is an early onset lupus patient on rituximab

    Are your immunoglobulins actually below normal range (hypogammaglobulinaemia) which makes IVIG a replacement therapy, or are your immunoglobulins within normal range?

    Wishing you all the best

    Coco

  • My level of igg is below 3 which apparently puts me at high risk.

  • Yes! my hospital goes by 5.4 being the lowest of normal range. My IgG is usually around 4

  • Charlotte, I too was having rutiximab, but I keep getting chest infections, 17 total for 2016 alone. Thats 17 courses of antibiotics. Although vasculitis is in remission I was always in danger of a relapse. Now my kidney consultant has got together with my chest consultant and came up with immunoglobulin infusion, had 1st one last week, cough seems to have started to subside , sleep increasing gradually,although a bit early to tell , will keep everyone informed after 1st sets of bloods come back, and await the next one.

  • Thanks ken, that's interesting. I've not had infections which is why I wonder if I need infusions. Difficult decision!

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