Fluoroquinolones and Neuropathy
 

I have read some things (here and elsewhere) about the potential for PN if you have taken fluoroquinolone antibiotics.

I took a course of Levaquin approximately 7 years ago, for a case of bronchitis that didn't respond to a few other antibiotics.

The bronchitis was causing coughing fits that lead to laryngospasms - (if you want to feel like you are about to die, try experiencing one of those). I would have taken anything they gave me at that point in time.

Anyway, I was just curious whether or not there is any evidence that PN caused by taking fluoroquinolones can occur many years later. Or, is it a more immediate effect?

The damage from fluoroquinolones is insidious...and it may add onto other damage from other environmental triggers that affect DNA of mitochondria. There are over 100 causes of neuropathy.
And some people may have additive situations of damage... some of this, and some of that...etc.

I haven't seen exact time frames given, yet. But each person is different. It seems to me that PN tends to be concealed for a while, until a certain plateau is reached and then symptoms become noticeable. There is evidence in the CMT community that Levaquin can trigger an asymptomatic (no symptoms yet) CMT adult into a deterioration. Given the highly variable presentations of CMT in those patients who inherit it, one has to
consider environmental triggers that may be in play for all these various individuals.

http://aop.sagepub.com/content/45/10/1312.extract

http://link.springer.com/article/10....01213830-00089

http://www.hnf-cure.org/neurotoxic-d...tooth-disease/

PN is very complicated, and involves so many factors, that no one clear answer appears to be accessible about it. Some of the posters who come here have immediate reactions to fluoroquinolones, and others have delayed reactions.

Yeah, this is kind of what I figured. A person is exposed to so many things during a lifetime. Usually, you assume that brief low level exposures to toxic materials doesn't cause major damage. (You don't have any immediate symptoms of a problem, so you assume everything is fine.)

But the additive effect is hard to predict. It seems like every time I do a bit of reading, I find about 5 more things that could be causing me a problem. But no way to know which ones (if any) actually are causing me a problem.

So, I'll just continue to work towards healthy living, a healthy diet, and a range of supplements to support good circulation, healthy nerves, and mitochondrial support.

I'd not accept any further fluoroquinolones if possible. There is always a chance of a life threatening situation, where you may not have much choice.

But for UTIs there are drugs that work that are not so nerve damaging.

Have seen Dr. Gareth Parry (not as a patient) a number of times. No question that some drugs are not for a CMTer. The drugs can make it worse. Or they can cause evident symptoms in some people who have CMT but are yet unaware of it. That is why there is a neurotoxic medications list for a person with CMT.

Do you have a link to this neurotoxic medications list? (Seems like something that anyone with neuropathy would want to have as a reference - not just those with CMT)

The list is for medications that are potentially toxic to CMTers. Some of them more than others. CMT affects the peripheral nervous system (PNS). CMT is one of the most common "inherited" neurological disorders.

I understand. I just thought if a drug was neurotoxic to someone with CMT, it might not be very good for other people either - especially if you have some form of PN.

Full believer
 

I am a full believer in that these anti-biotics can cause PN!

A few links:

http://ciproispoison.com/

Resources/Links page:

http://ciproispoison.com/1_3_Links-Resources.html


1. As of August 2013, the FDA finally added the word "permanent" to fluoroquinolone warning labels, but only in regards to nerve damage: http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm



My story:
For the first 6 months of 2013, I had a UTI every month. I was on cipro a few times for it, but also other anti-biotics. The last UTI I had, I was on cipro again, and during the week I took cipro, my whole body went into severe twitching and almost like convulsions/jerks. Not one area of my body was still. As soon as the cipro was out of my body, it all died down. And since July (my last UTI), I've been dealing with widespread twitching (BFS), and now what seems to be a certain PN or neuritis in my arm. I will never take a Fluoroq. again. It's on my allergy pass to not give me these drugs.

Going back to one year prior, in 2012, I had a UTI and was on cipro. In the week I was on cipro, I felt my left arm and left leg go numb. I was sent to a neurological hospital, stayed there for a week of testing. The first night I stayed, I also felt my arms start to burn, that was also the last day that I took cipro. Nothing found in any of my testing and the symptoms I had went away, but also as the cipro was washed out of my system from all of the IV fluids. I never connected that cipro might have had something to do with what I experienced, until that UTI in July 2013, the last time I took cipro, where my body went bonkers!

This is one list:
http://www.cmtausa.org/index.php?opt...=68&Itemid=180

I think it may be out of date, as statins do not appear on it.

This is another list:
http://www.cmtausa.org/images/docs/medical_alert.pdf

This is our thread here on Medications that may cause Neuropathy:
http://neurotalk.psychcentral.com/thread122889.html

Many of the same drugs appear on neuropathy lists, but I have seen over the past decade, that all the lists vary in some ways, depending on how the research was conducted.

It has only been very recently that statins are being recognized as demyelinating...and they have been out for over a decade now damaging people significantly.

Statins are not on the list because there is a very small risk to people who have CMT. It's up to the doctor and the patient. I would not take them. "Normal" people take them and it can cause weakness. I know a few people who do not have CMT that this has happened to while taking them. There are drugs which cause weakness which is unrelated to a worsening of neuropathy. In rare instances they can cause muscle damage and therefore could make a CMT patient worse even though the effect is not on the nerve itself. It is still advised not to take them as far as a person with CMT is concerned. It just makes sense to avoid them if at all possible. Most of the drugs on the medications alert list fall into this category. Other drugs on the list though are not for a CMTer at all.

I was on Cipro for six months 15 years before my idiopathic peripheral neuropathy symptoms appeared. Neuros say it was likely not the cause but I don't think anyone knows for sure.

My signature line explains mine

Statins are not on "lists" because doctors follow the "standard of care" concerning treatments. As long as statins remain politically high in treatment of heart disease, few doctors will stick their necks out and reveal the damage statins really cause.
(due to fear of liability concerns).

This is changing slowly as the link I put up the other day
listed statins as demyelinating:
http://jnnp.bmj.com/content/74/suppl_2/ii3.full

The UK article about statins doubling incidence of Parkinson's is also new.

I suspect we will see more dirt and truth about statins coming up in the near future.

As far as CMT goes --
 

I should have clarified. Statins are not on the neurotoxic medications list for CMTers because they are a very small risk for CMTers. However, they still advise a CMTer not to take them. As I posted before, they can make a CMT patient worse (weaker) even though the effect is not on the nerve itself. This information is for a CMTer.

I certainly do not need any more weakness. :( CMT is progressing no matter what a person does. That is so very true.

Statins affect nerves as well as muscle. Demyelinating means they damage the axons to nerves and/or prevent healing from minor damage. I would think for CMTers this would be a double whammy of sorts, not a minor issue. Whatever the process of CMT damage, you certainly don't need MORE damage from a drug, like statins.

3 of the 4 types of afferent nerves in the periphery are myelinated.
http://faculty.washington.edu/chudler/cv.html

I go by what the expert CMT doctors say. Statins do not affect the nerve itself for a CMTer. No need for me to discuss this anymore.

I have CMT and when I was briefly on Tricor five years ago my balance and strength deteriorated rapidly. My neurologist would only say "you might want to go off that", given my that my tryclcerides were over 500 she did not want to go on record as forbidding them. I took the hint and my balance did improve quite a bit. Being able to walk without falling every few feet seemed more important than theoretical heart disease in the absence of other markers.