Immunoglobulin Replacement: Is anyone on here... - Vasculitis UK

Vasculitis UK

7,857 members6,880 posts

Immunoglobulin Replacement

DevonLottie profile image
9 Replies

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

Written by
DevonLottie profile image
DevonLottie
To view profiles and participate in discussions please or .
Read more about...
9 Replies
Taranis profile image
Taranis

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.

DevonLottie profile image
DevonLottie in reply toTaranis

What is hyqvia?

in reply toDevonLottie

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.

anthony01 profile image
anthony01

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?

EOLHPC profile image
EOLHPC

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

DevonLottie profile image
DevonLottie in reply toEOLHPC

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

EOLHPC profile image
EOLHPC in reply toDevonLottie

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

ken13 profile image
ken13

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.

DevonLottie profile image
DevonLottie in reply token13

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

Not what you're looking for?

You may also like...

immunoglobulin replacement therapy

I have an immunology appointment on Monday with a view to me starting immunoglobulin replacement...
Mooka profile image

Immunoglobulin replacement therapy

Hi everyone, hope you are all well. The treatments for my GPA have now beaten my immunoglobulin...
nicholson27 profile image

Knee replacement

Just wondering if anyone suffering with vasculitus has had a knee replacement?
JanetDavis profile image

Vasculitis and Total Hip Replacement

Just wondering if anyone knows of any complications (other than the usual) that having Vasculitis...
Nova7961 profile image

Jenny

Hi, my dad has WG and his hip joint has deteriorated significantly and now needs a hip replacement....
jenny_hanly profile image

Moderation team

See all
zoe69 profile image
zoe69Administrator
Suzi70 profile image
Suzi70Administrator
JaneLE profile image
JaneLEAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.