Prophylactic Levoquin

[Suemolly1]

I have been hospitalized 3 times this year for pneumonia. My Dr. wants me to start Levoquin ever day as an extra layer of protection. I have neutropenia. My concern is all the side effects I read about so trying to weigh the pros and cons. Has anyone had any experience with long time use of this drug? Thank you

[lankisterguy Volunteer]

Hi Suemolly1,

There are lots of cautions about taking the fluoroquinolones like Levoquin due to some serious side effects see:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

this link will take you to a list of 19 past postings that include the 4 above: healthunlocked.com/cllsuppo...

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You may want to politely ask your doctor if you might use IVIG

webmd.com/a-to-z-guides/imm...

en.wikipedia.org/wiki/Immun...

emedicine.medscape.com/arti...

instead of long term antibiotics.

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Len

[Thundercat2]

I can't speak to the long term use, but I was put on it in January of 22 when my ENT said I was not responding to the other antibiotics for a sinus infection. I did not have any side effects from it and got well finally. I understand your concern however and it's worth checking into the IVIG route. Hope you find a satisfactory answer.

[GMa27]

I personally would never take it. None of my docs recommend it. I knew someone who took it & had the spontaneous ankle issue. Ask for alternatives.

[Suemolly1]

I'm already on monthly IVIG. This is an added layer of protection. Trying to weigh risk rewards

[lankisterguy Volunteer in reply to Suemolly1]

Hi Suemolly1,

It would help us help you if your filled out your complete profile per #3 on this pinned post

healthunlocked.com/cllsuppo...

And then also follow #12b to "lock" aka restrict your post to this community only. That way all of us are shielded from Google searches reading our conversations and learning too much personal info. Only you can do it, and if you edit your original post, all the replies will be protected.

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Len

[MisfitK]

Dumb question, but have you been treated for your CLL (there's no info in your Bio)? Is that where the neutropenia is coming from? B/c if you haven't been treated, but you are neutropenic enough to need monthly IVIG and to still get multiple pneumonia infections. it would seem time to treat your CLL.

Now if it's the CLL treatment (whether current or previous) that has caused this condition, then it's gonna be a tough call. I'd probably add the layer of support b/c IVIG does not seem to be enough.

PS - I would lock this post to Community Only (you can do this by editing your top post), so you can get more answers.

[AussieNeil Partner Administrator in reply to MisfitK]

Strangely, severe neutropenia is not a recognised treatment trigger for CLL. I was severely neutropenic for 11 years of watch and wait in stage 4.

[MisfitK in reply to AussieNeil]

I put that in the CLL Society's suggestion to start treatment for "B symptoms" and for "evidence of progressive bone marrow failure manifest by low blood counts (cytopenias) including anemia (low red blood cells) or thrombocytopenia (low platelets)" - this does not say ONLY those two cytopenias, and neutropenia is a type of cytopenia.

If you can't stay well, even with the addition of IVIG, it's probably time to start helping the immune system get better by going for its main issue - at least if I'm the doc.

[Poodle2]

Are there any other prophylactic antibiotics you could take instead? I was on Azithromycin 250mg (or can go up to 500mg) 3x a week for two years. It was really helpful to me. I didn't have any side effects from taking them.