IVIG anyone?
I'm curious after seeing so many having recurring infections, how many here have been tested for antibody deficiencies and are on IVIG?
I had years and years of recurring infections before being referred to a doctor who referred me to an immunologist for testing. I have an IGG subclass deficiency and have been having infusions now for 5 years. It took a couple of years of continuous treatment (q 28 days) before things started to improve but the overall improvement is remarkable.
Karen
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@kpger Interesting! My ID doctor had me tested also and at my appointment last week, he told me the results showed IGG subclass 2 was low and my IMM was a little low as well. He said that neither was of great concern but referred me to a hematologist for further follow up. Other than MAC, I have always been healthy. I haven't had the flu in over 10 years, I get a cold every few years but it is never a big deal, never got COVID. I do not take any vaccines because I don't want to fix what's not broken. However, it will be interesting to follow up on this to see if there is any connection with the MAC .
@mjb24 Do you mean immunologist? I am not sure a hematologist treats immune disorders? Maybe they are double boarded!
Did you know that immune disorders are the cause of bronchiectasis in about 10% of patients! Immune disorders are rare, much more so than bronchiectasis, and difficult to diagnose.
A few years ago during a routine visit to the allergist I was told I had mildly low IgG2 subclasses, along with a poor response to the pneumococcal vaccine. A year earlier pulmonologist said my blood work and response to pneumonia vaccine were fine. Immunoglobulin replacement therapy ensued with some modest relief but not what @kpger describes. With the advent of Brinsupri (along with daily Allegra), I expect that my treatment will be revisited at next immunologist meeting. I've had recurrent sinus infections mostly but they migrated to my chest, exacerbating the bronchiectasis. It's been amazing to me how much daily Allegra has helped my sinuses, and consequently my lungs.
@scoop I didn't know that about bronchiectasis and immune disorders. Maybe that's why they don't routinely check for it. I'd had IgG, IgA and IgM (totals) done on occasion and they were always within normal limits. This doesn't always give the whole picture. What my actual diagnosis is Specific antibody deficiency with normal immunoglobulin concentration and normal number of B cell (HCC); IgG2 subclass deficiency (HCC). I can't tell you what it all means, but I know after starting the infusions I've had fewer hospitalizations and serious illnesses. I've asked the immunologist if I'll ever be able to stop the IVIG and she said no. I'm also at the maximum dosage. Good thing I have a really good infusion nurse......we spend a lot of time toether.
I take Zyrtec daily as well and just started with Chlor-Trimeton. One tab nightly at bedtime. This has greatly relieved the post nasal drip and cough.
We are quite similar it seems. We both have SAD (selective or specific antibody disorder). It came out of left field. Siblings all healthy. Kids healthy. Extended family healthy. That's why I question it a bit. I started with IVIG but switched to subq due to possible side effects. It's way more convenient to be at home but frequency is greater than monthly. Between the Brinsupri, allegra and subq I am feeling quite well at the moment!
Here is a document listing the known causes of bronchiectasis, including immune def.
Causes of Disease in the Diagnosis of Bronchiectasis (Causes-of-Disease-in-the-Diagnosis-of-Bronchiectasis.pdf)
@scoop Definitely a hematologist. He wants him to review the results from my blood test.
@scoop that's interesting. Thanks for posting it. So many potential causes, but seems like very few people have heard of it.
I don't know how you do the sub q injections. I've been lucky and haven't had too many side effects over the years. The most frequent were headaches, fever and chills, but my doctor ordered fluids to be given prior to the infusions along with the Benadryl and Tylenol. It's helped a lot.
Continued success with your treatment!
@scoop I too am trying Allegra for my sinus drainage that so negatively impact my lungs. Could you share the dose and frequency of your use and also any side effects?
@lenorj When I took Allegra every 24 hours I felt my nose was too dry. Because of this I take one 180 mg tablet every 30-36 hours. I mark the time I take it on my calendar so I remember when I took it. My pulmonologist is on board with this plan. I have quite an allergic profile (molds, dust, trees, grasses, dogs, cats) and I get monthly allergy shots (3). Before starting Allegra I was simply was unaware how much sinus drainage went into my lungs, rather thinking all the mucus was from bronchiectasis. I hope you get a good result if you try it.