Forum

Warning about side effects of Ciprofloxcin and levofloxacin

I hope i can post this its important.

The FDA in America have put out a warning about serious side effects of the drugs called fluoroquinolones because the drugs can lead to disabling side effects, including long-term nerve damage and ruptured tendons.

Two of the main ones are Ciprofloxcin and Levofloxicin.

Now i only know about this because recently my husband was put of Levo for pneumonia. Within 2 days he could barely walk, the third day i rang 111, and when i told them he was on this drug they told me to get him to hospital. It turns out he should never have been on them firstly because he is a long term steroid user and over 60.

Anyway doing some research over this drug which has left him in the last week disabled he can barely walk, i have found groups of people in the states who have toxic reactions to these drugs. The FDA are now so concerned about it, they have put a warning out.

I know a lot of people with MS are given cipro for UTI.

A lot of people in the UK are now being diagnosed with Fibromyalgia, and in the states, they have found a direct link with the cipro and the after affects, and many are being misdiagnosed because its not fibromyalgia but the toxic affects of these drugs.

Scare mongering hardly when the FDA are actually putting out a warning. So i think i am sharing it, as it might save someone from the horrendous after affects of these drugs.

They must KNOW ABOUT it in the UK, as the doctor in the hospital clearly told my husband he should never have been given them because of the side effects in the first place.

I hope i can post this.

I really do think its important.

I have just spoken to two friends who have been recently diagnosed with Fibromyalgia. I simply asked have you been on ciprofloxin lately and they both said YES. Coincidence? They are both suffering with joint, muscle pain and sore tendons, and been told its fibro.

Anyway i think this should be sent out and more people made aware. Like I said a lot of people with MS have been given cipro even I have but after 2 days stopped it because it made me feel ill, at the time i never knew there could have been an issue with it.

My husband at 70 was walking and working and took 2 days of levofloxin and is now DISABLED. Using my scooter to get about and is in a lot of pain, and depressed.

Anyway, if it helps one person, it will be worth it.

1 Like

This is very important - and thanks for sharing. l know my husband was prescribed statins - and they made him so ill. Caused muscle damage - he had trouble walking. We do need to be vigilant - question all meds old or new that we take in case of long term damage.

1 Like

It does sound quite serious, but I’ve taken ciprofloxacin many times for UTI. It was my ‘go to’ antibiotic for quite a long time, so was on my repeat prescription at my GPs. (I’ve now changed this because nitroferantoin is working better.)

I’ve never had any dodgy side effects from it, nor do I have (or have had) any fibro type symptoms. It seems that it may be affecting some people adversely, but not in every case.

If people are currently taking ciprofloxacin for a UTI but have not got these types of side effects from it, I don’t think it’s a very good idea to just stop taking it, until you can get a doctors advice, perhaps on Monday.

Sue

2 Likes

Totally agree sue, not everyone is sensitive to these drugs, but a lot are. I just found out, my daughter was diagnosed with fibro and has been a long term user of Cipro I didnt know that she has tendonitis and a lot of nerve pain and muscle aches. Coincidence i dont know.

Its an odd side affect, as it might not even happen during taking them, but present afterwards, so its just well to keep an eye on it.

I joined a genuine group and there are over 5,000 members on it all suffering.

But again not everyone is going to be affected i have taken cipro it had no effect on me but nitroferantoin really did, i had to come off it after 2 days, as it affected my nervous system big time, and i found out afterwards it can do that.

I dont think people should just stop taking meds, but if they get tendonitis whilst taking them, i would urge them to ring 111, as i did with my husband, and the guy seemed to know all about the affects. Its like anything, loads of people take these drugs but with some they are affected. I just think gosh i got him stopped after two days, and he cant walk properly what if we had ignored the signs, he would be in a right mess now. Six weeks and he still cant walk up the stairs properly.

1 Like

Yes a lot of people are suffering with statins.

I wouldnt worry but for FDA to put out a warning they must have realised there is a bigger issue.

Any tendonitis on these drugs, is not right. xx

Can I add my voice to this and add it very loudly?

Several weeks ago I had a UTI which wasn’t responding to the usual antibiotics, and I’m severely allergic to penicillin which was the only one it would have been responsive to. . When the lab results came back for the third time, my GP was unsure as to what to prescribe me, As far as he knew the only thing he could do was to refer me to to hospital for an IV infusion. Seeing as this was late on a Friday afternoon (and I was still ‘walking wounded’ anyway ) he was hesitant in doing this. Hospital beds in my hospital are very scarce at the mo and the last thing I wanted was to take up the space of someone whose need was more urgent than mine.

Instead he rang the lab and spoke with the head microbiologist who suggest a short sharp course of Levofloxacin i.e. one a day for three days over that weekend (think it was 500mg)

I took these as instructed. On the fourth morning I woke up with my legs stiffer than they usually are, looked down at my right calf and heel and my Achilles tendon was was swollen to the extent that it it looked like the size of half a boiled egg (cut vertically) and the pain on touching it was excruciating.

Quick emergency visit to my GP who said I had acute Achilles Tendonitis as a direct result of the Levoflocaxin and I’d come within a whisker of rupturing the tendon completely.

On the patient information leaflet it did say that this can happen to 1 in 10,000 people but I’d been warned in the past that these PILs must cover every potential side effect so hadn’t really taken that on board.

My GP immediately Yellow Carded it

https://yellowcard.mhra.gov.uk/

and gave me advice on treatment. Since then I’ve informed my MS Nurse team and they advised me further with regards physio and heel inserts for my shoes. A few months down the line, I’m still unable to walk very far without it swelling up.

It’s bad enough losing mobility to MS alone without having something like this to contend with.

I’m not into scare mongering but I really would advise people not to take it.

2 Likes

oh heck

this is dreadful.

i’m on a maintenance dose of trimethoprim (one a day) it keeps me free of UTIs and i wouldn’t be without it.

however my sister was prescribed trimethoprim for a UTI and she had a severe allergic reaction.

so it’s not a one size fits all.

wishing you all a life free of UTIs.

carole x

The thing is though Carole, the after affects of such the like of Trimethoprim are not life threatening or life changing, like the floxie drugs.

This is epidemic now.

I take trimi for low maintenance like you.

You have a great GP.

I am with the group on facebook Fluoroquinolone Toxicity Group. Over 5,000 members, there are about another 3 groups i know of. This is not a 1 in 10,000 its rubbish.

Now some exciting news. A journalist who deals with all health matters for a large newspaper has gone on the forums and is asking for people who have been FLOXED (thats what the group calls it), if she can talk to them about their experiences, so it is being noticed in the UK.

My husband is speaking with her this morning.

I have since met loads of women now with Fibro, who have all been on Cipro or levo, and are ill and have weakend painful ankles.

The groups, have information on how to help get rid of the after affects. My husband has just started magnesium, and i am hoping he will have a recovery. He has been disabled with this stuff for weeks now.

So glad you are ok its very scary.

I forgot to ask have you been on Steroids recently, as the duty doctor at A&E told my husband he should never have been given the meds as he has been on steroids, and ongoing with steroid inhalers. He had only just finished a course of steroids about 3 weeks prior.

I contacted my neurologist yesterday because I am hurting all over. My palms and fingers are hurting and fingers are sticking when I bend them. My legs, back, knees are stiff and in so much paim

i have been on levaquin for 10 days. I just finished last one today. She said that the medicine can cause the pain.

Im glad I’m finished with them but I hope this goes away soon.