Fluoroquinolone Toxicity Syndrome

Hi John,

Sorry to hear this but it's not uncommon for people to get this problem.  Did anyone warn you not to go out in the sun as it actually is like sunburn and extra sun just makes it worse,

  Did this happen recently and did you have any other effects?  I ask because, if it was recent but you haven't had any other problems, there's still time for you to get something else like tendon problems start up.  Have you seen the warnings not to take Ibuprofen of other NSAID?  These can make other side effects suddenly start, even weeks after you took the Ofloxacin  Your doctor will probably say this isn't possible but it certainly is - ask the guys who've had it happen!

Are you in the UK or US?  The pinned (first) post in this discussion gives useful addresses to support groups and information sites.  Please report your side effects to the agency for whichever country you're from.  The more reports they get the more they'll have to take this seriously.

I very much hope nothing else happens but please don't ever take another fluoroquinolone again as you won't get away with it next time - the effects are cumulative.

Take care.

Hi  miriam

I had them on the 10 Aug 2017 so a few months now, i am in UK and the doctor never told me anything about sun or taking Ibuprofen the only other tablets i take are ones for acid reflux. But i do have laods of other health problems that i mention my profile.

Hi John,

I just took a look at your profile (I'll do mine one day!) and saw you have a few probs already.  Unfortunately, Ofloxacin or Ciprofloxacin are the recommended drugs for epididymitis and prostatitis so many guys get affected this way.  Docs can read enough to see what they should prescribe but never (ever) read about the side effects or give out any warnings. 

August isn't actually that long ago in 'floxing' terms so please do be aware that you may get aches and pains in any joints or muscles but especially watch out for your Achilles.  You might not have further problems but if you do get hints of odd muscle pulls or pains without a cause watch you don't strain or over use the affected area - something may be weakened and give completely!  I'm not trying to scare you or anything, just telling what most doctors don't even know can happen. 

One guy had no noticeable after-effects from a course of Cipro then took one Ibuprofen about 6 months later for a cold and everything kicked off at once.  One of the addresses above is for a UK support group website.  Hopefully it will give you more information plus tell you how to join the group if you're interested.

Ok thank you very much will reply here if i get any other problems.

John I want to add my 6 pennorth, I had pain in the perineum which was wrongly diagnosed as prostatitis, the catch all term. I was given Cipro with no warning 6 yrs ago.......Now I suffer with perineum probs plus a long list of damage from the Cipro, then dumped by the gp. Take it easy if you get Cipro problems.

 

Hi Praj,

I've just seen this.  I've already replied to you on the discussion you started - and I suggested you looked up this discussion but you beat me to it!  Check out the addresses at the top here - all useful - and send in a Yellow Card plus maybe see about joining a group for support.

Take it easy, and read my other reply.

 

Hi Kerrie,

This sounds like you may be floxed.  Mexico is the kind of place where they would use an FQ for just about anything - and, yes, what you had would certainly warrant Cipro's use (or one of the others - also different countries use different names).

I take it you are In Australia?  I can find you the link to an active group there or you can look on face book for one called fluoroquinolone toxicity group, they are international.

Sudden inflammation in every joint for no reason is not normal!  Did you happen to take a NSAID (e.g. Ibuprofen) for headache or something?  They can often kick things off. The worst thing is that there's no actual cure but forums like this one and the groups do have a lot of suggestions of what to do that might help such as supplements and things to avoid. Steroids and NSAIDs and heavy exercise or physio treatment are things to avoid.  Also try to stick to a clean diet i.e. no sugary food or junk food, no preservatives or antibiotics in the food, no alcohol.  This will best help your body to get over the toxins.

Make sure you never take another FQ again.  It sounds like, if you took them over 2 years ago and didn't really realise, then you may be getting away with it.  Many people don't associate these odd pains and inflammation with a previous course of antibiotics so happily take another course of Cipro and WHAM! Try to concentrate on the positives and avoid putting other poisons into your body.  You should be fine if you can stay healthy and keep fairly fit!

 

Thanks Miriam. Yes after seeing four GP and rheumatologist, who gave me predisinole and hcq I have been lucky to have discover a GP who practiced naturopathic medicine and an acupuncturist... I am loaded with supplement and probiotics to cleanse and repair ! Funny really all this time where gp during 2016 just said I had remember of infection hence hives and unexplained rash all over my body ! I am going to stop (a bit frightened) the hcq today even though reports suggest it has little side effects compared to other dmards) . my inflamation is still in body - hands neck and knees - not sure if Cro grade 7 is high..this is what causes most stress - when flares. Wow at least I can make sense of what has been happening to my body and begin repair with some knowledge of why ! 

Thanks so much 

Kes 

And yes all through 2016 and. 2017 I took paracetamol for headache and mostly ache like flu ! I then started to think it was because I was not exercising so started back at yoga...I think at some levels this stretched my tendons and added to the original flare! 

That sounds very typical of fluoroquinolone damage.  It actually destroys collagen (which is in just about everything in the body from tendons to eyes!) which is why the symptoms are so wide reaching.  Why some react differently to others is still a bit of a mystery  - but we're all different. 

The collagen makes the fibres which are the bundles that tendons mostly consist of. In a sports injury the collagen repairs or renews itself and the fibres get put back together in the correct manner.  With flox damage, the collagen struggles to be repaired or renewed and it ends up looking like a botched job with fibres and holes all over the place.  Sometimes it gets there eventually and people can get back to normal life (although jogging is probably not a good idea).  Other people find they never get their old strength back and any form of exercise can be painful (even impossible). 

Yoga is all about the stretch and normally the stretch is what builds up muscle and improves flexibility.  Floxing (FQ Toxicity) is all about not putting anything under pressure, not taking risks and resting as much as possible.  A ruptured tendon is not at all funny - and can happen so easily as they're in such a mess!

Be aware of your movements and stop before you feel the slightest strain.  Do movements but stay well within your limits - never push.  Treat yourself like precious crystal - you are precious and you don't want tiny pieces breaking.

Glad to hear you feel you're improving overall!

I have read of collagen injection for arthritis but they are evidently a no,no for tendons.

CONCLUSIONS: Overall it is clear that the local administration of glucocorticoid has significant negative effects on tendon cells in vitro, including reduced cell viability, cell proliferation and collagen synthesis. There is increased collagen disorganisation and necrosis as shown by in vivo studies. The mechanical properties of tendon are also significantly reduced. This review supports the emerging clinical evidence that shows significant long-term harms to tendon tissue and cells associated with glucocorticoid injections.

 

Dear Miriam,

I have just begun to experience yet another source of trouble that can indeed be attributed to FQ toxicity, or so I'm told by my hospital's orthopaedic people. Of interest to you is that the nurse who called me back with this information mentioned that she had learned about FQ's negative effects while still in nursing school!

In my case I have a Putti-Platt reconstruction of the left shoulder and I realized that I was beginning to feel the same sensation that, years ago, would precede an impending shoulder dislocation. So, it would seem that all those who have undergone certain types of orthopaedic surgery might be at risk.

I am PMing you with relevant details which would probably be "off-subject" in this thread.

Warm regards and thank you for your support to so many of us on this Forum.

alan86734.

 

Thanks, Alan,

I haven't had a pm from you yet but I'll be interested to see it.  Are you saying that anyone who has had certain types of orthapaedic surgery might be at risk if they subsequently take a FQ? 

It's very refreshing to see that nurse was actually made aware of the dangers at nursing school - I haven't heard of this before!

Hi Miriam, yes, that is exactly what I'm saying, but I would first like to research it a little further. My background is mechanical engineering and I insist on using one of my favourite four letter F-words (FACT).

The nurse I referred to is local  to me here in Barre, Vermont, USA, Apparently the orthopaedic folks got an early warning: rising number of unexplained tendon failures.

I have not sent you the PM yet. Blame it on Cipro which I hope I am recovering from. Hopefully I'll get the PM out to you by this weekend (March 3-4).

Warm regards, alan86734.

 

Hi Alan

I like the four letter word FACT. Sadly not everyone does and find it distasteful LOL!

​I too am a victim of the quinolones and also lyrica a drug prescribed for me for focal seizures. Sadly it caused a movement disorder cortical myoclonus. I can PM a link to it and the name of the US dr who was jailed for fabricating research and forging another drs name onto research documents!!

​Psizer have made billions and billions of dollars from this drug as well as its sister drug Neurontin. In the UK lyrica/pregabelin  is only licensed for focal seizures. It can also cause  Long qt syndrome. Magnesium is recommended to chelate this poison quinolone out of your body. Plus stick to fresh foods NO take ways or ready made meals. Obviously avoid all drugs containing fluoride, even some eye drops contain fluoride.

Vit B co helps as does Vit D.

j

 

Hi Harriet,

With apologies I'll just correct you as I know you like FACTs  and the situation is very confusing.

This is the situation in the UK: generic forms of pregabalin have been available since 2015 but they are only licensed for epilepsy (focal seizures) and/or generalised anxiety disorder.

Pfizer, the patent holders of Lyrica pregabalin DO have a licence for Lyrica to also be used for peripheral and central neuropathic pain in adults (as well as for epilepsy  and/or generalised anxiety disorder).

Apparently no generic version is available in the US until sometime this year.

I'm not sure how much attention pharmacists pay to all this as ours repeatedly send my husband a generic (for his neuropathic pain, therefore unlicenced) and I keep having to ask for actual Lyrica.  He says the generic is 'different' and doesn't work the same. 

Hope this is clear, everybody!

Hi Miriam No [problem. I understood the Preg/Lyrica is not licensed for fibromyalgia. 

Moreover the dr who allegedly carried out research for Lyrica and its sister drug Neurontin was jailed for fabricating the research and forging the signature of another dr on a 'research' paper.

His license is revoked and he was also fined .

?A little known well concealed side ffect of pregabelinlyrica is the possibility of Long QT syndrome. If you get this you will run into grave difficulties should you become ill and require other medications because this syndrome means that hindreds of drugs can kill you by causing torsades des pointes and cardiac arrest. I am sorry if I sound alarmist and I do not wish to cause anyone any distress but I wish I had been told all this before taking quinolones . Then taking  Lyrica for focal seizures/ mesial temporal sclerosis.

Lyrica is a very expensive drug too. It is prescribed very casually yet causes further problems for thousands of people.

Another bizarre thing is that not all the drugs to be avoided in the Long qt syndrome over 400 of them are highlighted in the official guidance.

That is why my cardiologist, the medical director and Public Health Director wrote to me giving websites to refer to such as xxxx.xxxx, the xxxxxxxxxxxxx xx xxxxxxx the worlds leading authority on Long qt.

?GENERIC  . Yeah different, its cheaper!!!!! I am gluten, wheat, soy, maize starch./corn intolerant thanks to Cipro and lyrica. Drugs contain these as binders and fillers. I have to have brands not generics.

?Can't sue the drugs company wither if the drug is a generic one. 

Alan, you are not supposed to give your personal information on this site as it is open to the whole world to see!  Anyone can read your address - they don't have to log in. The moderator should actually not have permitted it and I suggest you take it down.

Miriam, I couldn't agree more!! I thought that by posting on the little envelope icon that would create a PM. Evidently this is not the case, so thanks for the warning.

Also, I misspelled your name, now corrected.

All the bet, alan86734

 

Personal details not allowed by pm. 

Why not, are they being censored ?

Hi again Alan I understand that personal contact details are not allowed but perhaps Patient has changed its policy on this. I feel that for security reasons contact details are not displayed on the public forum identity theft etc, spamming and so on., however that is just my opinion. Best 

Hi, Harriet, I am in the process of deleting or otherwise removing my post. It seems that this can only done by the moderator. Any suggestions or help you can give me is welcome, and I realize that this is really the Moderator's task? How do I contact the Moderator, or do I just sit here and wait for him/her to contact me?

Warm regards, alan86734 (blushing furiously!)

.

Sorry I do not know.

 

At bottom of the post you want removed click on the link that says report this in red letters.

Thanks Donald, when I went looking for the offending post, lo and behold, it had gone into limbo which is exactly what we wanted. Thanks Moderator, and all who helped me out. Now I've go to figure out what went wrong here because I have the redacted PM plus the one I promised you folks.

Warm regards, alan86734.

 

Oh thanks Derek again. My MRI and exray showed damaged to joints and yet my new gp and acupuncturist believe it is all tendon. I was going to look at collagen but now hearing from you guys am reluctant as it all makes sense. My partner, fingers crossed, has a work contract coming up in Germany and Switzerland mid this year . I think I will seek advice when there as I have read their health system is light worlds ahead. In the meantime I will limit stretching and continue with my massive doses of supplements. 

I am hoping inflamation subsided soon as this worried me more than anything. Inflamation means more damage. 

Ps can you or anyone tell me if C-RP 7 is very high. I think it is and yet all gp seem to dismiss it. 

Kes 

Hi My husband 5 years down the line of being floxed has got over a lot of the initial toxicity but still has problems with all the joints in his fingers and wrists . His forearms are tender in between the tendons . He has taken liquid collagen in the form of a sachet but not sure what supplements to take to help what I believe to be tendinitis. Any advice from fellow sufferers would be appreciated 

Gillian. Hi there is much written about supplements to take. I am new to all of this so please check and double check before taking anything 

My gp/naturopath have me on

1gm vit c 

By 50 Ng

Zinc 50 mg

Vit d3 1000 iu 

Msm 1000mg

Magnesium chalate 3000 per day

B12 

I also soak my hands and wrists daily in garlic, Curcumin, ginger and additional powder form of magnesium 

I am eating only fresh food no sugar or rather added sugar. 

I have blood group A which means I am best to eat predominately plant food - see book or articles on food for blood type.

The message is to maximise health to allow it to fight the toxins that gave got into joints tendons eye.

I too am looking st collagen next, but did just today on this sight read it is not suitable for tendons. Look it up it sort of makes sense as the tendons order is jumbled so adding collagen could cause more issues. I don't know if correct but seek qualified advice. 

Cheers Kes 

Sorry 

By 50 Ng Should read b6 50 mg

That would explain why his hands are getting worse . How can I reverse the collegen issue . 

Hi Kerry what quantities do you mix for the soak is it hit it cold water . Do you have joint pain in your hands and what has lowered the pain for you 

Gillian I put in at least three cloves if garlic about 1 tablespoon of each of other. I use fresh roots too! I actually keep adding making a broth ! Sounds horribly but I swear it helps with reduction of pain and inflammation ! 

I don't know about collagen. Am talking with accurpuncturist today and further research ! I also left message with my GP !

I am trying not to take any painkillers so all the natural remedies although take timecare better in maintaining overall health !

Has he had his bloods taken recently. Most GP in Australia will give copies ! I know bloods vary from one day to next but the more you look at them the more the dots connect together ! My own was high copper which resulted in very low iron and my histamine levels indicate undermethylation- new word to me but again indicates weakness in body and mind. All those anxieties that was not in my makeup prior to this have now been alleviated! Still inflammed but I do feel great! I don't push myself with exercise - had to stop yoga and now just do a little stretching. - don't want to break ! Lol 

Finally I think in the scheme of things yr husband and I are lucky to have come to this when you look at others we appear moderate and gee this is an opportunity to become the healthiest you can be !

Hope this is helpful and I stead please check and double check cos I am new at this experience and my knowledge zilch except what is working albeit slowly for me

Kes 

As hot water as he can take. It feels great. Maybe stop the collagen until confirmed by specialist as it may be ok for joint but not tendons. I really don't know. 

How long does the garlic smell linger on you and in your house???

It's constant I thinks though No one has run! Lol 

You would clear a theatre or cinema if you went.

Haha however, I am not in pain. Lol 

Kerrie thank you for all your advice . I was told FQ deplete all Testisterine and B12 so when he had his checked it was all practically zero . Going to start from scratch again and he is cutting out all the alcohol which sadly was his only way of getting some pain relief . Making a fresh start today and hopefully after a few weeks will see some changes in his pain and overall well-being . He did go to an acupuncturist but didn’t see any changes . How was your acupuncturist treating you  . Thanks again 👍

Um my acupuncturist works in consultation with my gp. Gee I went to her in desperation and she forwarded my to the GP.  She even looked at my exray etc and has copy of all blood tests. Um I was told today that I order for b12 to be of use I need to take b complex as well. This also makes sense otherwise the b12 is running around looking for the rest of b complex and we don't have enough mine was on the lower side of normal. So getting everything to the optimum will support the recovery. She on a practice point does cupping and needles she also did iridologist and next week will do tissue test to compliment blood test . I have needles in me for a week ! Little ones. It is costing me a fortune but I guess I would have spent this going out for dinner and drinks 

Um alcohol I understand is ok but remember his liver is probably working overtime even if it comes back normal from blood tests ! So I have cut out for now. Not a big drinker but like a glass of red or two. - antioxidants!

I hope he gets some relief using the broth. ! 

Keep exploring. 

Kes 

Where are you located? There are some significant expertise on floxed toxins and side affects Derek on this site sent me to them. They are on fb and they are so supportive and links to dr etc. 

please can u pm them to me Kerrie. Many thanks.

If you click on the envelope icon it should open in a new window allowing you to personal message.  If you write first then click on the envelope it will just post here.  I see the moderator's done his job anyway!

Hi, Miriam,

Thanks for your help, right on as usual! I think I have found the problem. I wrote and edited the text on my clipboard to then paste it in to the blank PM window to send, and it was somewhere along this path that the PM flag got reset.

Warm regards, alan86734

 

Hi, Miriam,

There is a report out here in the U.S. grouping "Mitochondrial" diseases under this common classification. Does this include us? If so I'll send you the appropriate link.

Warm regards, alan86734.

 

Hi Alan,

I guess it does as FQs affect the mitochondrial DNA so that they either can't replicate or replicate badly.  Please send me the link - pm is probably best so it doesn't have to be moderated. 

There was an article in Nature Magazine last week (21st March). If you look for 'when antibiotics turn toxic, nature magazine' you should be able to find it.