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Exacerbations * Levaquin * Selective Immune Deficiency! Insights??
Hi all, a lot here all at once. I have bronchiectasis and MAC (failed treatment). Both mild. RSV went into pneumonia this past spring -- doxycycline no help but Levaquin knocked it back quickly. The year previous, I had 2-3 less serious exacerbations. I was tested after all this for immune deficiency and indeed I have "selective immune deficiency" and I will be starting IV immunoglobulin (IVIG) soon. I am told by the immunologist that the immune deficiency ties together the bronchiectasis and the auto-immune Crohn's disease I have also had for many years and may even improve both.
Since going off MAC treatment (ineffective + mild hearing loss) and going off Humira for the Crohn's when I had pneumonia (hopefully to let my immune system get back up), I now am on vaca from meds for both, which is great. That's besides Breo daily inhaler (because I am also now diagnosed with asthma).
Meanwhile a second exacerbation involved what had seemed like a percolating cold for a week or two, and then I was slammed off my feet sick, with much-increased sputum, this past week. Nurse practitioner at my NYU Bronchiectas/NTM clinic prescribed Levaquin immediately, and it seems to once again be knocking back the infection quickly.
The nurse practitioner notes that they haven't been able to identify causative bacteria for the exacerbations -- my sputum smear both times, and always, shows nothing -- but the culture always turns up positive for MAC. I assume this means I have a "light load" of anything.
I also see when I look up Levaquin here that it seems to be used most often for pseudomonas, which presumably I don't have (!). BTW, I have no issues with Levaquin. No side effects at all. (I am very aware of the risk of tendon injury.)
Do others here routinely get Levaquin for exacerbations?
I know a treatment plan can include starting antibiotics at the first sign of an exacerbation. This is the first time I've been started off immediately with the big-gun antibiotics. The exacerbations I had last year were viruses and were treated successfully with tapers of Prednisone.
Anyone with insights ...?
Anyone here with diagnosed primary immune deficiency? -- that's the broad umbrella for the many kinds of immune deficiency that are presumably innate or inherited and not caused by something else like immune-suppressing meds or chemo. It includes Selective Immune Deficiency and the more serious Common Variable Immune Deficiency (which despite the name is less common and more serious).
And anyone who has been on infusions of immunoglobulin (IVIG), and did it improve your bronchiectasis exacerbations or anything else?
I'm very grateful for all the generous sharing of experience and wisdom here. It means everything. Thank you.
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@lvnl Levoquin is strong but a good antibiotic if you can tolerate it. I am on it 3 times a week as a prophylactic measure. I also had immunoglobulin several years ago. For me MAC has been the gift that keeps on giving since 2016. I am 76. Irene5
Thank you Irene! Did you think the immunoglobulin helped you? I've been told I will probably need to get infusions for the rest of my life. If you feel comfortable sharing, was there a reason you didn't continue?
I'm close behind you. I'm 70. I've had Bronchiectasis for at least 15 years but until I started having a chronic cough about 3 years ago it was stable and more or less ignore-able by my doctors. Not any more!
Over the years, I've been prescribed Levaquin for pneumonia, so maybe that's why they prescribed it for you. Did it help?
Humira is immune suppressing, so if you can get by without it, that's better for your lungs/MAC.
I take a daily allegra which helps a lot overall as I am allergic.
You won't know if IVIG works until you're on it for 6 months. If I were in your situation I would try it. I'd opt for subq at home, weekly infusions. It sounds worse than it is. A nurse comes to your place and trains you until you are comfortable. I have tried both. IVIG not too much difference in how I felt. Subq keeps a more constant antibody/immunoglobulin level running in your system than the up and down of IVIG. Some people with different immune disorders have great results; SAD (selective antibody disorder) is harder to treat. I'm currently being weaned off it because they think I can be covered by Brinsupri. After travel came home with an exacerbation, so we'll see!
Have you had a vaccine challenge?
If you have more questions feel free to DM me.
Thank you, Scoop. Very helpful. Yes, both times I've had it the Levaquin helped quickly and dramatically.
And yes, I had the vaccine challenge. My antibodies were low to start with overall and barely budged in response to the pneumovax. That's what prompted my BE/MAC team to send me off to the immunologist. My IGG has been low-normal or slightly low when it's been tested over the years. So here I am.
Thanks for sharing your experience with the self administered immunoglobulin. That's super reassuring to me. The immunologist told me the options and right now I'm waiting to hear from the company she works with about what my insurance will cover and so on. I was leaning to having in-home infusions once a month if that's available to me, I suppose because it all sounds so overwhelming! So it's very helpful to know you didn't find self-administering nervous-making. Thanks again.