Fluoroquinolone Antibiotics (Cipro, Levaquin, Avelox, Plaquenil, etc.) and ME

[waif]

Thank you

I was wondering because a lot of people take Cipro and not nearly as many take Plaquenil but I agree they must be a different class of drugs. That eases my mind because I think I am going to need to take Plaquenil

@Gingergrrl I'm a ginger too lol. Did you happen to get your complements tested, like c3 c4, when you are floxed? Did any of your lab work look abnormal?

 

[waif]

this paper is so messed up. her labs were all normal:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4528905/

Permanent Peripheral Neuropathy
A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration

Abstract
The health risks and side effects of fluoroquinolone use include the risk of tendon rupture and myasthenia gravis exacerbation, and on August 15, 2013, the Food and Drug Administration updated its warning to include the risk of permanent peripheral neuropathy. We present a case of fluoroquinolone-induced peripheral neuropathy in a patient treated for clinically diagnosed urinary tract infection with ciprofloxacin antibiotic.

 

[Gingergrrl]

I was wondering because a lot of people take Cipro and not nearly as many take Plaquenil but I agree they must be a different class of drugs. That eases my mind because I think I am going to need to take Plaquenil

Cipro and Plaquenil are definitely not in the same class of drugs and Plaquenil is NOT a fluoroquinolone antibiotic. This does not mean that Plaquenil is safe, but it is definitely not an FQ antibiotic.

@Gingergrrl Did you happen to get your complements tested, like c3 c4, when you are floxed? Did any of your lab work look abnormal?

I am not sure if I ever had my complements tested either at the time that I was floxed or more recently. I lost most of my medical records prior to 2015 due to mold and have no access to them (and I was floxed in 2010). I saw a rheum in early 2016 but I do not think he tested me for these.

Edit: I actually found the answer to your question in another post! It turns out that I was tested for C3 and C4 levels in May 2016 by a Rheumy who was ultimately unable to help me. My levels were low but were within the range at that time.

 

[waif]

thanks for sharing! you'd think more floxies would discuss this because low complements indicate an AI disease and i think cipro would definitely trigger ai diseases. oh well.

my c3 c4 are low and at the very bottom of the range, negative ANA, RF, low wesr, i wish i had extensive labwork done after i took cipro. hindsight is 20/20.

is it safe to assume your c3 and c4 are still low but "normal"? are you getting any treatment for it? i'm afraid doctors will brush me off but my hands and parts of my arms have been numb 24/7 since 2010. i didn't have my complements tested until literally a month ago.

 

[Gingergrrl]

thanks for sharing! you'd think more floxies would discuss this because low complements indicate an AI disease and i think cipro would definitely trigger ai diseases. oh well.

In early 2010 (when I was floxed), there was a lot less information available compared to now and I was a bit lost. I actually took Levaquin (and have never taken Cipro) but the mechanism is the same. I am not sure about the statistics of fluoroquinolone toxicity syndrome leading to AI diseases but it would not surprise me at all. I know it played a huge role in my total illness picture.

my c3 c4 are low and at the very bottom of the range, negative ANA, RF, low wesr, i wish i had extensive labwork done after i took cipro. hindsight is 20/20.

I had a negative ANA at the time I was floxed but in 2016, my ANA was positive at 1:160, speckled pattern. I am negative on RF and am not sure what wesr is?

is it safe to assume your c3 and c4 are still low but "normal"? are you getting any treatment for it? i'm afraid doctors will brush me off but my hands and parts of my arms have been numb 24/7 since 2010. i didn't have my complements tested until literally a month ago.

I have not been re-tested for c3 and c4 since May 2016 so I do not know what the levels might be now. I was not treated specifically for anything relating to c3 or c4 but I have been treated in general for all of the auto-antibodies that I have with high dose IVIG and later with Rituximab. My Levaquin injury was both a systemic neurotoxic reaction and it also nearly ruptured my triceps tendon in my right arm. But I have never had numbness in my hands.

 

[waif]

oops sorry, i just mean ESR (inflammation like hs-crp) my labs for inflammation are always extremely low! which is why nobody takes my symptoms seriously. i too took cipro <2010..i can't remember. i took it multiple times for a UTI which i believe was actually interstitial cystitis, which i still have. to complicate things i have ehlers danlos syndrome, but nobody i've talked with has hands that are numb like mine. the most severe pain is manifested in my brachial plexus, like brachial neuritis, which would make someone's hands gloved. but i get pins and needles all over for no apparent reason.

i'm sorry your ana is positive now. i'm going to browse through some of your old posts. i'm not familiar with rituximab. i'm 34 years old so if my ana does come back positive in a few years, i will not be surprised. i think i read once it becomes positive it doesn't go back to normal. my hair is also thinning a lot. i've given up on regaining sensation in my hands but i have beautiful auburn hair and i'd like to hold onto it as long as possible. sigh.

 

[Hip]

There have been a few accounts of ozone therapy leading to recovery from fluoroquinolone toxicity syndrome (FTS). See here:

Bill’s Recovery Story – Avelox Toxicity

Ricardo’s Story – Recovery from Ciprofloxacin Toxicity

I think the treatments were by ozone autohemotherapy, which requires a doctor to do.

It's possible that the easy ozone application technique that I devised (see this post), which costs very little and can be done at home might be a good substitute for ozone autohemotherapy, but I am not sure.

 

[tokyo99]

hi, I have to bump this thread
I have EDS and mysterious peripheral neuroparhy, (fwiw i took cipro many times in my 20s)
recently i found out my c3 c4 are extremely low, indicating i might have an AI disease (my ana tests were negative)

so you guys are saying cipro and plaquenil are not in the same drug class? because i'd seriously considering taking plaquenil if it'd bring my c3 c4 into a healthy range. my hands are numb 24/7

i tried to google floxies and low c3, c4 and nothing came up. so it's possible my immune system is suppressed from something entirely different

Fluroquinolones triggered my CFS as well. I am positive for ANA but c3/c4 etc are normal...Not on any drugs but found a low fat (no oils , avacoado etc) vegen diet keeps my pain under control. Did you go onto to plaq?

 

[perchance dreamer]

At one point, my ENT wanted me to take either Levaquin or Cipro because of chronic pseudomonas sinus infections. After researching and talking to other doctors about it, I declined. I'll never take these drugs.

My doctor of physical medicine has known 5 patients who had spontaneous Achilles heel ruptures after taking those drugs. My chronic fatigue doctor says they poison the mitochondria. People are supposed to be at more risk of the tendon ruptures if they are older and already have tendon and ligament problems.

That said, I've known people who have taken them without too much of a problem.