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Anyone know of Immunoglobulin therapy ?

(8 Posts)
mymatemarmite Fri 07-Apr-17 21:07:57

I have been told today that this could be a real possibility for me due to recurring sinus infections and then this last week an ear infection with blocked ears.

I see an Immuniologist every 6 months and he mentioned it in passing when I saw him in February, but today I spoke with the ENT who I also see at the same time and he mentioned it and asked me if the Immuniologist had mentioned it to me.

Is it an ongoing process for life or is it just a few months treatment?
Did it help lessen the infections?
Painful?
Were you allowed to do it at home once you were comfortable doing it?
How does it fit in with work? - do they mind you taking a day off every 3 weeks?

So fed up with getting infections and having to take 2 lots of strong ABS for 2 weeks plus Optrivine plus flixsonase plus having to use neilmed twice daily (which I really do dislike!!)

grumpysquash3 Fri 07-Apr-17 22:40:40

Can you be any more specific about the therapy? Immunoglobulin just means antibody, so it could be one of any number of things! Did he give you a name?

Skyllo30 Fri 07-Apr-17 22:42:58

It's IV IgG given as an infusion to those with low levels. The product comes from blood donated.

It's usually a life long process but some patients can be trained to self administer at home, usually subcutaneously rather than IV. Immunoglobulin treatment is also used for certain disorders at higher doses.

mymatemarmite Fri 07-Apr-17 22:47:23

I have a specific polysaccharide antibody deficiency, I honestly can't remember if they gave it a name. When the Immuniologist 1st mentioned it in Feb I kind of dismissed it and was taken aback a little when ENT spoke about it today. (unfortunately I was in the car when he rang with no pen so didn't write anything down).

Hulder Sat 08-Apr-17 09:10:52

It's lifelong as you don't grow back the ability to make the immunoglobulins so they have to keep being topped up.

Ultimately it would be your immunologists decision. If they are suggesting it, I would go for it. It must be worth a try as having constant sinus infections sounds miserable.

I've met a few patients who have it, they all seemed pretty happy with it and some of them did it at home. Seeing as I see people for other health problems, it's probably significant that they didn't see their immunoglobulins as the biggest health problem they had, just part of their routine.

Work may be happy to make a 'reasonable adjustment' for you to go to appointments given the longterm result would be you take far less time off sick with sinus infections and are more productive in the work place as you don't feel crap all the time. Plus if you get up and running to do it at home it won't bother them at all.

mymatemarmite Sat 08-Apr-17 11:07:39

I did wonder about it being a life long treatment but had hoped it would a short term treatment!

Thanks for all your responses, I guess I will find out more come August.

Hulder Sat 08-Apr-17 11:30:09

Have you read this?

primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/specific-antibody-deficiency/

If you are getting frequent infections, presumably what they are thinking about it a long term benefit to you of not getting hearing loss as a result of all the infections (or lung damage if you get recurrent chest infections), as well as the more immediate benefit of just not having sinus infections one after the other.

mymatemarmite Sat 08-Apr-17 12:30:14

Thanks Hulda, I will give it a read.

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