Fluoroquinolone Toxicity Syndrome

I'd perhaps change that to "...being slowly picked up..."

None of the papers I wrote to have mentioned it!  There were press there (apparently) but I didn't have time to find out who they were.  There were too many affected people to meet for the first time!

Hi Donald,

Do you mean spots as in areas or spots as in a kind of rash - both would actually be typical of Cipro!

Many people find magnesium supplements help - or try soaking your feet and ankles in hot water with Epsom salts.  Turmeric and black pepper may help - I guess it depends on how much you take and how often. Antixoidants and multi minerals can also help - and perhaps cod liver oil.  Basic healthy eating and no sugary junk food or alcohol as these seem to make things worse.  Have you seen to avoid Ibuprofen and other NSAIDs and steroids?  Paracetamol is usually ok for pain.

If you read all of this thread and the other threads under Fluoroquinolone antibiotics you should get some idea of what has happened and what you can do to help the symptoms. There are active groups in most countries, depending on where you live you might be able to join one of these for support and advice. The Moderator's post at the top of this thread has some useful addresses.

Good luck,

Hi Anna,

Eye problems can certainly be an issue but, as you've noticed, not many people mention them - perhaps because other problems seem much bigger.

The fluoroquinolones can affect any cell in any part of our body. They particularly go for anywhere there is collagen which is in the muscles and tendons (this is why people often notice tendon problems first). Our eye muscles also have collagen, of course, while there's a different type in the cornea. Our nerve sheaths have collagen (including the optic nerve) along with our blood vessels - in fact, you name it, Cipro can probably affect it.

Did you have Cipro in the form of eye drops? This might explain why you find your eyes are worst affected as the drops would get straight in there without going through the rest of your body. Many people are affected by the ear drops as well. If you took oral tablets I really don't know why this would be your worst problem but I can tell you that you are not alone.

I think you are right to not want to take steroids as they can make the problem worse, ditto NSAIDs. I have absolutely no idea what you could do to reduce the swelling so my best advice is to take a look at some of the websites for FQ adverse reactions. There are some addresses in the pinned post at the top of this thread. If I come across anything that I think will be of help to you I'll post here or message you.

Miriam, thanks again. Actually, I had one 500 mg tablet, went to the ER within 24 hours with blurry vision, eye balls felt like the would pop out of my head, horrible eye pain, severe light sensitivity. I had to close my eyes, wear sunglasses and be led into the ER. Of course I had the popping knees, sore ankles, and walked like I was 90, despite being 35. Anyway, the eye has been examined, and the eye itself is healthy as well as the optic nerve, blurry visioned subsided also thankfully. The muscle itself in the orbital area is the only thing left swollen abnormally, I've heard this happens to some people who take chemo or have an auto-immune disorder and they need steroids to fix it. It has been 7 months now and I am hoping it goes away on its own. If you do hear of anyone with a similar issue or find information about reducing orbital inflammation, please do mail me. Thanks again!

Hi Anna,

I haven't read all of this but it was mentioned on one of the cipro forums. It's from this site so the link should be ok without being moderated (fingers crossed!). I think it's very relevant as it points to thyroid problems causing the swelling and Cipro (and the other fluoroquinolones) are known to mess with the endocrine glands including the thyroid. I hope it helps you and/or your doctor to figure out what has happened in your case.

https://patient.info/health/overactive-thyroid-gland-hyperthyroidism/thyroid-eye-disease?fbclid=IwAR2x-qiJAxoEOvDzal2SzcdSkeAeOaFzpntzehT6cU0jq40TCCdX3YAt1jg

I know many people who've had adverse reactions to Cipro have to take drugs for their thyroid. How are your other symptoms now? Any improvement? Having all these problems from just one tablet is not unheard of, I think it indicates you have some genetic problem that caused such a swift reaction. Or maybe you had an underlying thyroid problem that the Cipro brought out into the open.

Hi Miriam,

Thank you for the link, I will read through it. I was , however, already checked for thyroid and it is completely healthy. They also checked eye pressure and optical nerve, and everything is good. The doctor concluded it to be an immune reaction that caused eye muscle swelling, which could have even been secondary to eye tendonitis (trochleitis) - The Cipro could have attacked the tendon in my orbital area and it caused the inflammation.

OK, well you're ahead of me here so I have no other suggestions at the moment. Are you on social media? There's a group specifically for eye problems caused by FQs. I searched the group for 'swollen eye muscles' but didn't find anything conclusive. It might be worth joining them yourself and posting your question there. If you're interested I can pm you with the name.

Hi Sandra, I'd never heard of MGD so I've just been reading about it - I didn't realise 'dry eyes' is probably caused by this condition. I haven't read everything yet but one treatment I can't see mentioned is a 6 month course of a very strong antibiotic! I've seen that antibacterial eye-drops are sometimes used when heat therapy and massage treatments don't help so can you say if these are what you were given or do you mean actual oral fluoroquinolone tablets?

If you do mean 6 months of oral fluoroquinolones I am seriously shocked! They were originally developed as chemotherapy drugs and then, when they were found not to be very efficient (difficult to target a specific area apparently), they were re-branded as THE antibiotic that would work against anthrax. Since then (the late 80s) they have become one of the most widely prescribed drugs in the world. Why they would be chosen for blocked eyelid glands is totally beyond me. Why even 6 months worth of the drops would be used is unthinkable - many doctors say the active ingredients of the drops can't be absorbed into the body but this is very far from the truth.

I'm pleased that the info in this thread has been useful to you and I hope you've seen that there are groups and websites with a lot more information. I don't know which country you are in but there are groups in most places. I hope you've seen that gut problems are all too common - because any antibiotic will strip your gut of the good 'flora' that do your digesting for you and a week's course of a fluoroquinolone has been found to effect your microbiome for over a year. The bloating may be from candida or H. Pylori while the twitching and vibrating are probably caused by nerve problems. Diet choices and supplements including probiotics are key to getting over this. Find out what you can but if you want to ask and questions I'll try my best to answer them.

Hi Derek,

At least in the US sufferers can now be diagnosed with FQAD (FluoroQuinolone Associated Disability). The EMA said after the European Review into FQ side effects that they couldn't give them a diagnostic code because the symptoms were so varied! In the UK there are one or two doctors who have given out a diagnosis of Fluoroquinolone (or Ciprofloxacin) Toxicity or similar, but they are very few and far between.

Also, as you rightly point out, even if you get a diagnosis there's no actual treatment. You'd kind of think they'd wait until there is a treatment before they go and poison others but - hey - that would be in an ideal world!

At least the message about the dangers may be getting heeded in some countries.

I had meant to send you this previously.

A major reduction in the use of fluoroquinolones has driven a 12% decrease in total antibiotic use in Canadian hospitals in recent years, according to a new study in Antimicrobial Resistance and Infection Control.

In the retrospective surveillance study, acute care hospitals participating in the Canadian Nosocomial Infection Surveillance Program (CNISP) submitted annual data on all systemic antimicrobial use (AMU) from 2009 to 2016. National and regional rates of AMU were calculated and analyzed using defined daily doses per 1,000 patient-days (DDD/1,000 pd), and AMU data were used to rank the top antimicrobial agents used individually, by class/subclass, and by year. Overall, 16 to 18 CNISP adult hospitals per year provided data, with representation from 6 sites in western Canada, 15 in central Canada, and 1 in eastern Canada.

From 2009 to 2016, the data showed a 12% reduction in total AMU (from 654 to 573 DDD/1,000 pd, P = 0.03). Fluoroquinolones accounted for most of this decrease, with a 47% reduction in combined oral and intravenous use, (from 129 to 68 DDD/1,000 pd, P < 0.002). The top five antimicrobials used in 2016 were cefazolin (78 DDD/1,000 pd), piperacillin-tazobactam (53 DDD/1,000 pd), ceftriaxone (49 DDD/1,000 pd), vancomycin (combined oral and intravenous use: 44 DDD/1,000 pd), and ciprofloxacin (combined oral and intravenous use: 42 DDD/1,000 pd).

Among the top 10 antimicrobials used in 2016, ciprofloxacin and metronidazole use decreased significantly between 2009 and 2016, by 46% (P = 0.002) and 26% (P = 0.002) respectively. Use of ceftriaxone (85% increase, P = 0.0008) and oral amoxicillin-clavulanate (140% increase, P < 0.0001) increased significantly but contributed only a small component (8.6% and 5.0%, respectively) of overall use.

The authors of the study say it's unclear whether the reduction in fluoroquinolone use is related to stewardship efforts, warnings of adverse effects associated with fluoroquinolone use in the United States and Canada, or a combination.

derek

this is good information. Are you on facebook?

they have a great forum called Fluoroquinolone toxicity 24/7

please join.

I know of the Forum but I don't use Facebook