IgA Deficiency Support Group

Selective immunoglobulin A (IgA) deficiency is a relatively mild genetic immunodeficiency. People with this deficiency lack immunoglobulin A (IgA), a type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract. It is the most common of the primary antibody deficiencies.

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Just need to hear from others

Hi my name is Kim, I am 41 years old and have spent a lot of my life fighting with colds, sinus infections, flu, headaches and just being sickly. Taking 1 course of antibiotics is never enough for me, sometimes as many as 3 before the sinus infection is gone. In November 09 I started with a cold that quickly turned to bronchitis, I was treated with several antibiotics from November 09 until February 10, when I was hospitalized with severe breathing issues, ICU for 3 days and a regular room for an additional 4 days. Released with the diagnosis of asthma although I have never had any signs of asthma prior. I was ok with the exception of a few sinus infections and headaches until December 10 when I got a cold a few days before Christmas, treated it at home like a cold and used the nebulizer and inhaler I had been instructed to use for my newly diagnosed asthma, to no avail. I was admitted back into the hospital just a few days after Christmas and spent 5 days in a regular room, released again with the diagnosis of asthma. All of this time in the hospital I received IV antibiotics, steriods, cough medicines and several other medications. At one point 1 of the Drs. made a statement they dont keep anyone for 5-7 days for asthma I felt she was doubting me, now I look back and see she was questioning why I was so sick! This 3rd time I started with a cold and was again admitted to the hospital, but a different one this time, because I know there is more to this than just asthma!! I was in PCU for 2 days and a regular room for 5, discharged again with the bronchial pneumonia/asthma diagnosis. When I saw the pulminologist for my follow up visit I asked if there is any way it could be more than just asthma and could they please check my immune system. They were hesitant, but agreed, my husband has said for years there is something wrong with my immune system, and I have been told for many years I need a bubble, thinking maybe I do. My initial test results have come back, my IGA, IGG2, and IGG4(almost none) are very low, indicating an immune deficiency, now we need to find which it may be and what is causing it. I have been given the pneumonia vaccine and I am waiting the 30 days to have the blood draw and rechecked for the levels to have reacted, this appointment will be July 28th. So, now here I sit and wait...afraid to see people, leave my house or return to my work in the dental field. Every time my son sneezes I panic, seems when he is sick I am a day or two behind and we both take forever to recover!! Everything I am reading says this is something I have had probably my whole life yet the best healthiest period of my life was during my pregnancy, why would that be shouldnt the baby take my immune system down? I have so many questions to ask and not sure where to turn to next. If you or someone you know has had similar issues, please contact me, I would love to pick the brain! Oh and I have gained 35 lbs in a year, and no baby...lol!!! So, if you read my writings or see me out and wonder why I have been down....here it is!! The not knowing is the hardest part!!
I wrote this a few weeks ago, I have since gotten the results from the Pneumonia vaccine and I did respond a little. My Dr tells me I am a complex case!? I have decided to go to a city where the Drs have had more experience with treating this condition. I have an appt in Philadelphia(4 hrs from home), but I would love to get any suggestions for Drs in the PA area, I will travel! Any info is welcome! Thank you so much!

Replies

markincleveland
markincleveland

If only your IgG2 and 4 are low your total IgG is probably still in the normal range. Most physician do not teat sub classes because there is no drug that is FDA approved treatment for subclass deficiency or for IgA deficiency.

I'll be curious to see what your new doc as well as your insurance carrier has to say.

Good luck
deleted_user
deleted_user

Kim - You and my daughter sound like you have a similar health record, but she's only 13. She was just diagnosed on August 30th. She sees a hematologist/oncologist who also specializes in chronic health issues. He has been absolutely wonderful. Unfortunately, we are in South Texas. My point is, keep asking and talking to others. You will find the right doctor. Right now, my daughter's issue is the extremely high levels of strep in her blood stream. She's on 21 days of Septra and will be retested the end of October.

Hope all of your results are good and you begin to feel some peace. I"m new on this sight, but this is whole process is VERY overwhelming. Hang in there!!
deleted_user
deleted_user

HI Kim, the other replies are similar to what I would say. Regular testing especially for the sub classes are important. I only found out in 1990 that I had an IgA deficincy.Had to give up Nursing as I spent most of my time in sick bay.It's hard I know. Stress doesn't help I also gained weight until I realised that was only going to compound the problems. Exercise,plenty of rest when possible, sensible diet and see an expert who deals with the Immune system.Tiredness is also a symptom.Keep away from others who aren't supportive and try to understand. I now live a very quite life at an age where just going to the movies can mean 4-6 weeks of infected chest etc.Hang in there. Answers will come.
deleted_user
deleted_user

Hey Kim,
My name is Sarah and I live in NY. Your story sounds very simillar to mine. I went through tons of Docs before my gastro doctor picked up my Ig levels were not normal. My primary doc is still not sure about the diagnosis but he is working with my immunologist. I see a group in Rochester NY. I know it is a long way for you. But how I found my doc was googling on the web. when i found one i liked i looked at thier background and looked at what thier experince was. My doc did work at the Mayo clinic during her residency in immune disorders. I was very lucky to find her. Good luck..