Anyone nebulizing with Ipratropium

Posted by smallfish1 @smallfish1, Nov 17 1:32pm

In 2022 I was hospitalized with Covid. Because I was so susceptible to pneumonia my pulmonary doc ordered more extensive blood work that revealed my immune system was compromised and I began monthly IgG infusions. Also I was diagnosed with MAC that same year and was treated with antibiotics for 12 months. I was then diagnosed with bronchiectasis. I am seeing a pulmonary specialist at Brigham Womens Mass General who has me nebulizing with levalbuterol, ipratropium and 3% sodium chloride. I don't see ipratropium mentioned when others talk about nebulizing and wonder if others are using ipratropium. I am also seeing an immunologist at Mass General who has increased my IgG dosage to help build up my immune system.

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scoop | @scoop | Nov 17 2:36pm

When I tried ipratropium, an anticholinergic medication, I found it dried me out too much and made airway clearance even more challenging than it already is. A NP prescribed it to me who really was not well versed in treating bronchiectasis and everything that goes with it. It's typically prescribed for asthma and/or COPD, not specifically bronchiectasis. Do you find it drying? Was it prescribed for asthma?

The funny thing about having asthma and bronchiectasis is that there are competing goals. In asthma they want to suppress the cough. In BE they encourage the cough as it's necessary to remove phlegm.

There's a center in Boston that treats bronchiectasis and NTM disease at Mass General. Have you considered seeking treatment there?
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center/id/33/massachusetts-general-hospital
Can you say more about what the immune workup found? When I had an immune workup it was found that one of my subclasses was low. Since my immune system is borderline normal, the immunologist hopes that brinsupri (one and only drug FDA approved for bronchiectasis) will help to quell inflammation and therefore infections. We plan to do a trial off of immunoglobulin replacement therapy in 3-6 months once Brinsupri has had a chance to stabilize in my system.

smallfish1 | @smallfish1 | Nov 17 4:19pm

I am seeing a pulmonary specialist at Mass General. The last time I was hospitalized with pneumonia (March of this year) they had me nebulizing ipratropium 4 times during the day. Maybe they want to dry me out!
My body does not produce IgG or IgA or IgM. In 2010 I had lymphoma and the docs think my chemotherapy treatment destroyed my ability to produce immunoglobulin making me pretty much defenseless. None of this was discovered until Covid.

spectrumcyclist | @spectrumcyclist | Nov 18 7:23am

I have been taking it for 13 years with no problems I can attribute to it. I cannot speak to the immune system problem with any expertise except that after watching, 14 years ago my immune system numbers remain low for months, I ditched my immunologist (and whole treatment team for that matter) who were advising me not to take Vitamin D and not to exercise outdoors when the temp was lower than 60 and also to inject myself with hemoglobin. My new treatment team told me to exercise as much as I liked and take Vitamin D and also started me with the ipratropium, antibiotics, etc. It is not all and up to the right, but I feel a whole lot better now than I did before I switched teams and got started a plan that worked for me.

irenea8 | @irenea8 | Nov 18 8:35am

In reply to @scoop "When I tried ipratropium, an anticholinergic medication, I found it dried me out too much and..." + (show)

@scoop
When you say your immune system is borderline normal are you referring to the main results or the subclass results? Do you remember which subclass was low? Also it is not clear to me what the connection is with Brinsupri regarding your immune system.

scoop | @scoop | Nov 18 9:50am

Overall IgG normal range, subclass 2 low along with pneumococcal titers. I have to fill in some blanks here to answer your question but I think the doctor wonders if I don’t have a persistent primary immunodeficiency, but rather a secondary issue that may improve once the underlying inflammation is controlled. In other words, fewer infections etc.