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Old 08-23-2012, 10:50 AM   #1
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IgA deficiency treatment?

I had blood specialist today, who confirmed that I have IgA deficiency. In fact, there are no IgA antibodies in my blood. The doc told me that it is possible to have IV infusions once a month to replace missing IgA but first she ordered some further testings then I could get these infusions.

I'm a little bit sceptical because until now every specialist who I visited told me that there is no current way of replacing IgA. The doc today was the first one who told me different.

Other than that I have quite severe problems with ongoing throat infections, ongoing diarrhea, and ongoing fever.

Is anybody here with IgA deficiency and receiving such infusions?

 
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Old 08-23-2012, 06:36 PM   #2
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Re: IgA deficiency treatment?

Omg that would be lovely..... I have IgA deficiency - count less than 5 and every single dr says there is nothing to help me.
Tell me is it only the IgA level low on you??
Btw you do know that with IgA deficiency GOD forbid you need blood it has to be IgA deficient blood or it must be washed !

Wow please tell me more about the infusions- I went to 5 specialist begging for help and they all said nothing for IgA defiency. True I have a lot of other immune problems but guess this is life for me.
Best wishes !!!

 
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Old 08-23-2012, 11:41 PM   #3
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Re: IgA deficiency treatment?

Hey! Apart from IgA deficiency I also have moderate IgM deficiency, so maybe the doc confused things a bit and she meant she will give me IgM infusions? Who knows, I have follow up appointment in about 2 weeks anyways when tests arrive.

Yeah, I heard that there are really severe reactions if you need blood transfusion with IgA deficiency.

What are your problems because of IgA Fred? What other immune issues do you have?

 
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Old 08-24-2012, 04:29 AM   #4
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Re: IgA deficiency treatment?

Hi- first of all my name is Terry- Fred is my screen name- lol!
I have celiac sprue, interstial cystitis , chronic sinus infections, migraines, diabetes & ewsevere asthma. If someone coughs on me I get sick it's so ridiculous. I've literally begged for help to boost my immune system. But no one can help me. I've lost 2 jobs because of my health . Ive got a lot of allergies and it not fun at all.
Best wishes to you .
Hugs terry

 
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Old 08-29-2012, 05:37 AM   #5
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Re: IgA deficiency treatment?

Hi there,

I'm sorry to hear that your doctor has given you bad information. There is no treatment for IGA deficiency. The monthly infusions he spoke of is likely IVIG - Intravenous Immune Globulin - which ONLY increases your IGG. I have CVID - Common Variable Immune Deficiency as well as IGA deficiency and get these infusions. If you get sick alot about the only thing you can do is take a propholactyc antibiotic.

 
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Old 08-29-2012, 07:54 AM   #6
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Re: IgA deficiency treatment?

Hi! Yea I thought it might be that.... I can't begin to tell you how many immunologists I have seen begging them for treatment . If you just look at me crossed eyed I get sick. I've lost so many jobs because of my medical issues. I have a number of immune problems all linked to my IgA deficiency.
I'm out of work now 3 yrs... just started doing some private duty night shift and had to give it a 2 week break cause the baby was getting a live virus vaccine and the odds are I'd catch it and I truly don't need that one. But $ is needed very depressing. However I must thank the family for telling me - some people wouldn't of done so!
I've had people purposely cough & sneeze on me to get me sick ( in former worplaces). Nasty.
It's a cruel world we live in.

I've been on so many antibiotics that I've gotten allergic to majority of them
Hugs & stay well

 
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Old 08-30-2012, 05:49 AM   #7
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Re: IgA deficiency treatment?

Is your Igg normal?

 
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Old 08-30-2012, 09:31 AM   #8
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Re: IgA deficiency treatment?

Hi- its 100.
Ty terry

 
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Old 08-31-2012, 05:26 AM   #9
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Re: IgA deficiency treatment?

Quote:
Originally Posted by Fred1967 View Post
Hi- its 100.
Ty terry
If you are in the US than a total IGG of 100 is extremely low. If you have other low immuneglobulins (which you do - low iga), have they worked you up for CVID?? Common Variable Immune Deficiency - IGG 2 standard deviations below normal (normal, depending on lab is anywhere between 650-1200) and yours is, low IGA and/or IGM (you also have this), history of recurring infections often requiring more than one antibiotic, etc, etc. Since you know your levels, all they have to do is administer 2 vaccines (always pneumonia and usually diptheria - TDAP) wait 3 weeks then check your antibody response. If your doc is unwilling to do this, then I would highly suggest getting a second opinion. Im surprised he hasn't already done this with your IGG levels shocking low.

 
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Old 08-31-2012, 07:28 AM   #10
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Re: IgA deficiency treatment?

I'm allergic to all the vaccines.... They are made in neomycin and I'm highly allergic the neomycin.
So you suggest go to another dr but how will they check if those vaccines are working since its been years since I've gotten them??

Ty for your help!
Hugs

 
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Old 08-31-2012, 08:13 AM   #11
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Re: IgA deficiency treatment?

Looking at the list of ingredients it does not appear pneumonia and Tdap have neomycin in them. I cannot give medical advice but if it were me, I would get a second opinion. IGG makes up the larges part of your immune system as for as the immuneglobulins go and there is treatment for CVID but not IGA deficiency. IGG deficiency should be more worrisome to any EXPERIENCED immunologist. We are not allow to post links or refer to websites but if you look up CVID you can read all about it. If your IGG is truly 100 that is FAR from normal

 
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