IV immunoglobulin Therapy

[Twinkle_12]

Does anyone have any experience of IV Immunoglobulin Therapy? I keep getting infections that I can't get over and there has been some talk of this Therapy. I've had sinusitis for ten days now .. it's exhausting.

[tremarel]

I do subcutaneous immunoglobulin weekly. Been on it for over 10 years now. It keeps the nasty infections away. Such a pain when constantly living with infection . X

[Twinkle_12 in reply to tremarel]

Thanks Tremarel. Would you say it's worth having then? I can't cope with all these infections so it seems like the right way forward for me x

[tremarel in reply to Twinkle_12]

Oh gosh definitely ! If your levels are down it's a must as you could pick up any life threatening infection.

All the best to you x

[Barnclown in reply to tremarel]

Hi again tremarel: am so glad IVIG continues to be great for you.

Do you take daily prophylactic antibiotics too?

Which clinic gives you this treatment? Is it immunology? How often are you seen in clinic?

XO

[tremarel in reply to Barnclown]

Morning Barnclown. No I don't take prophylactic antibiotics any more. I only take when I need too when I become unwell with usually urine infection & that's normally ciprofloxin as having a kidney transplant & being allergic to penicillin makes things harder. Yes is through my immunology clinic I have my infusions. I usually go every 6 months or sooner if I have a problem. It's great as I do my infusions at home. It's all delivered to me every 3 months. X

[Barnclown in reply to tremarel]

Thanks so much!

Am always so glad to see your smile & your replies here...there aren't many of us with these low immunoglobulins

Your clinic sounds really attentive: YAY 👍👍👍👍

It's really great you're doing well

🍀😘

[Barnclown]

Hello Twinkle.

Yes, I know 2 people who have had IVIG (intravenous IMMUNOGLOBULIN G). One has early onset lupus & hypogammaglobulinaemia, like me, and is benefitting greatly from monthly IVIG ongoing...she has been having it with prophylactic daily antibiotics for several years along side rituximab. The other one doesn't have any diagnosis of underlying immunodeficieny and developed dreadful rashes from just 1 round of IVIG...then it turned out he'd been incorrectly diagnosed...so no more IVIG. He is still coping with the rashes, poor guy

Immunology hope I can avoid IVIG by taking daily antibiotics indefinitely. But, if I have any breakthrough infections, Immunology is telling me that i will begin IVIG. I'm doing fine after 10 months on daily antibiotics and I hope to avoid IVIG...which means monthly infusions in hospital, or home injecting Every week. My immunolgobulins G, A & M have consistently below range for years (well before my treatment with immunosuppressants began).

IVIG is very expensive...the NHS is very careful when prescribing it

Have your immunoglobulin levels been tested?

Hope something in there helps

🍀🍀🍀🍀 colette

[Twinkle_12 in reply to Barnclown]

Thanks so much Colette - as always you are such a help and support.

My IGG levels have been monitored and low for two years but I am now starting to be unable to shake infections. I've been referred to a clinical immunologist by the consultant rheumatologist.

I think I'll see the immunologist and see what they come up with.x

[Barnclown in reply to Twinkle_12]

YAY: good luck...please keep us posted!

Were your infection instances high & your IVIG levels low before you began immunosuppression?

🍀😘🍀😘

[Twinkle_12 in reply to Barnclown]

Yes IGG was low before I began immunosuppression and I did have regular sinus problems but the antibiotics were more effective then and the body was better at fighting.

I'll update once I've seen he immunologist ...

[Barnclown in reply to Twinkle_12]

Please do update us

Although I wish no one this immunoglobulins deficiency, I am glad a few of us are here

🍀🍀🍀🍀

[Fennella02]

My premature critically ill baby boy (aged 10 now!) was given these infusions as he fought for his life against pneumonia and septicaemia. He was on a huge amount of treatments but did seem to turn the corner to stability once these infusions started. They wouldn't offer them to you if they couldn't see the need/benefits. Best of luck. Clare X

[Queen45]

Hi Twinkle, I'm glad to find someone who is going through this "immune globulin injection" IVIG infusion, I didn't know what i was really getting into, i just started my first injections in December, it was a two day process which my body took well for the first dose,mild headache, nothing really new i've noticed..I'm going for my second dose in a week and hoping to be better in strength & fighting off some infections that seem to appear because of my weak immune system...

[Twinkle_12]

Hi Queen45 - that's really useful. Where do you do these injections? I have to go to the Royal Free Hospital in London to see the immunologist. Will you have to have them every month from now on? Sounds as though you think they are worth it? I think that if I don't have them I'll just continue to pick up every infection going and have it linger for two weeks ...

TWinkle x

[Queen45 in reply to Twinkle_12]

Yes Twinkie, for the next two months im scheduled for these injections then they will check my (ck) count and my strength, and these on going infections & weak immune system...there worst then the first time i got them which was about 15 years aGo..i was in kind of a remission for a while...but i hope to beat this or a least tame it for a few more years...this flre shut down all my muscles too...i was hospitalized for 5 days, never stayed in the hospital thaT long after having my children...this illness had off my feet this time...

[Wendy39]

Hello. I'm afraid that I cannot add anything as this is all new to me but I had a blood test yesterday to check my immunoglobulin serum levels for - to my knowledge the first time. I am on MMF 3g a day (6x 500mg tablets a day) and have been since July 2016. It is controlling the lupus well but I've gone from a bladder infection, to a cold/cough that has lasted around 10-12 weeks and then a nasty sickness and diarrhoea bug. My GP said that she would check these levels and I could discuss it all with dermatologist next Friday. Well actually a GP With A Specialist Interest In Dermatology, but hey. I did ask the GP if maybe I would need to reduce the MMF slightly in an attempt to find that elusive balance. So we'll see. But I had no idea that people had to receive such treatments if their levels were insufficient. Always so much to learn. I hope you don't mind me following the post, it's really informative. Good luck with everything. Wendy