Exacerbations * Levaquin * Selective Immune Deficiency! Insights??

Posted by lvnl @lvnl, Sep 18 2:11pm

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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htolan | @htolan | Sep 20 12:00pm

I have hypo a gamma globulin anemia and have taken IVIG for thirty years. I was diagnosed with bronchiectasis about 5 years ago. The gamma helps me. I took levoquin for pseudomonas and messed up my Achilles tendon. It’s not in my tool chest any more.
I take IVIG every 28 days and it helps.
Good luck.

bayarea58 | @bayarea58 | Sep 20 12:01pm

In reply to @irenea8 "@tcd518 Interesting Toni. My CF sputum test usually takes about a week before they post the..." + (show)

@irenea8 @tcd518 my CF respiratory test takes 5-7 days to post results.

scoop | @scoop | Sep 20 12:08pm

In reply to @bayarea58 "@irenea8 @tcd518 my CF respiratory test takes 5-7 days to post results." + (show)

@bayarea58
Can you say more about when/why you take a CF respiratory test? Do you mean in addition to a standard respiratory smear? AFB/NTM and fungus are separate tests, correct?

bayarea58 | @bayarea58 | Sep 20 12:15pm

In reply to @lvnl "Thank you, Scoop. Very helpful. Yes, both times I've had it the Levaquin helped quickly and..." + (show)

@lvnl I am in the midst of a workup for a primary immune deficiency now. Not sure where it’s all going to end up but infusions are on the table. Honestly before my NTM diagnosis all of this would have completely freaked me out. But I have seen so many handle so much, it gives me faith and confidence that I can too. Home sub q’s are not scary. You just have to learn what to do. I have given sub q’s to several of my cats over the years, it looks more intimidating than it is. I have heard sub q infusions are better tolerated. I will post more when I know more. Good luck!

bayarea58 | @bayarea58 | Sep 20 12:41pm

In reply to @scoop "@bayarea58 Can you say more about when/why you take a CF respiratory test? Do you mean..." + (show)

@scoop I believe the CF respiratory is both smear and culture, just like the standard respiratory. Yes, AFB and Fungal are both separate tests (but see discussion below). I have just finished my MAC treatment, and during that time (13 months) did my AFB testing monthly. For regular monitoring, I did CF respiratory and fungal every three months. However, I have an even newer pulmonologist (last one retired) at my HMO who feels a separate fungal is unnecessary. They say the CF respiratory will report any problematic fungals. I have not been able to confirm that. And, to add to what is already a confusing topic, I have read one lab’s CF respiratory sputum test may be different from another lab’s CF respiratory sputum test, in terms of precisely what is tested. I am still working to nail all this down. As it currently stands, moving forward, will do AFB and CF respiratory sputum testing every three months. Jury is out on whether I push to add a separate Fungal test back into that rotation or whether it is truly unnecessary.

bayarea58 | @bayarea58 | Sep 20 12:48pm

In reply to @bayarea58 "@scoop I believe the CF respiratory is both smear and culture, just like the standard respiratory...." + (show)

@scoop hopefully this was clear but just to say it more simply: I do the CF respiratory sputum test in place of the standard respiratory sputum test. So whatever my monitoring schedule would be for sputum testing generally that is when I do it.

lvnl | @lvnl | Sep 20 12:54pm

@htolan, @scoop, @bayarea58, @irene5 ... I'm very grateful for this super-helpful conversation.
I know I've had both CF sputum cultures and standard sputum cultures but I didn't know the difference or why one or the other might be ordered for us. That is, from what I'm learning here, the CF sputum testing will show pseudomonas but the standard culture won't. I've also had a pneumonia panel twice now, which is not a culture but a bunch of PCR tests.
Gonna look back at when I last had the CF sputum culture to consider asking for it at some point -- probably at some point after finishing the course of Levaquin.

irenea8 | @irenea8 | Sep 21 7:27am

In reply to @lvnl "@htolan, @scoop, @bayarea58, @irene5 ... I'm very grateful for this super-helpful conversation. I know I've had..." + (show)

@lvnl
Standard sputum testing can find Pseudomonas. However, standard testing can still miss Pseudomonas in specific situations where a CF-specific culture would catch it.

sweethighland | @sweethighland | Sep 23 7:50pm

In reply to @irene5 "@lvnl Levoquin is strong but a good antibiotic if you can tolerate it. I am on..." + (show)

@irene5 hi Irene, are you taking levo or Cepro (3) times a week? what is the dose?

irene5 Irene Estes | @irene5 | Sep 24 2:38am

I take Levoquin 500mg three times per week plus nebulizing up to 4 times per day with a medication I can’t pronounce:). I am in bed at the moment but will check in the morning. I am awake momentarily because my knuckleheads ( Simba and Nala) needed to go pee:). Irene5