EM, Neuropathy and Fluoroquinolones

Hi, my name is Jenn. I'm 23 years old and was recently diagnosed with EM. This past November, I was given Avelox ( A fluoroquinolone drug ) for a sinus infection. I have suffered severe adverse reactions from this drug. It started out initially with heart palpitations, a shooting pain down my arm, then migraines. Days later -- it developed into joint pains -- then tingling sensations. 3 Months after my reaction, the fiery burning and swelling sensations started. Initially my physiatrist didn't know what it was and told me it was just neuropathy and began treating me. It continued and got worse.

I then saw my rheumatologist about a week and a half ago and he confirmed what I had thought -- and diagnosed me with EM.

I am curious if anyone else in here has developed EM after taking a fluoroquinolone antibiotic (levaquin, cipro, avelox, floxin) ? The FDA has recently put these medications on a watchlist because they believe the warnings for neuropathies on these drugs are potentially inadequate.


Hi Jenn

That's awful that you've ended up with EM, possibly due to a course of antibiotics. Did your doctor tell you that was the probable cause of the EM? My mother had a terrible reaction to an antibiotic last week, I'm not sure which one, and her hands and feet were bright red and burning. While it disappeared after she was given steroids (it was probably an allergic reaction, rather than what you've experienced), she told me that she was thinking that this is how my EM must feel. It will be interesting to see if other members have developed EM after taking one of those antibiotics.

I hope you're getting some relief from your medications, now that you've been properly diagnosed.

My EM didn't start with a course of antibiotics but I came out of remission when I was very poorly in hospital being pumped with 3 different IV antibiotics (I'm not sure which ones but was told that my infection had just started to go into my bloodstream so assume they were strong ones..?) It also spirralled out of control when I had another course of antibiotics for a chest infection. I have just put it down to things getting worse with virus or illness. I have had so many antibiotics over the last few years I've lost count, 2 lots just in the last month..!

I had my first flare in September of 2012...right after a round of Cipro. It gradually went away, and by November of 2013 (more than a YEAR later), it was gone. Took Cipro again in February of 2014, and the pain returned, even worse than before. Still hasn't gone away, but I'm praying it eventually does. I now list ALL Quinolones and Fluoroquinolones as drugs I'm severely allergic to. I'm so sorry you have a similar story. I can't even think about it without getting angry and dealing with so much regret I feel like I'm going to choke on it. I always think, "if only I had taken a different antibiotic." My life would be so vastly different right now. I could be playing with my kids instead of sitting in a chair with a fan on my feet, 40 lbs. heavier. Oh well. The "what ifs" and "if onlys" will kill you if you let them.

Three out of four antibiotics I've taken in the last 12 years have caused my skin to burn. Not sure what families they belong to. I caught an eye infection yesterday (doctor told me they are rife in sydney at the moment) and he has given me an antibiotic gel to put into my eye. First application was a few hours ago - will I flare or not?

I do associate the start of my erythromelalgia with taking Naramig for migraine. The warning on the packet said

'Transient flushing' which happened to me, but then I started flushing/burning more frequently.

Coincidence?

blue

Thanks, Tizzy. I've tried gabapentin, and it didn't really do much. Epitol helped more. Also the Lyrica/Cymbalta combo. I agree, my pain specialist has been my most helpful doctor. She had me participate in a clinical trial of something called scrambler therapy, and it really helped. I'm hoping she decides to purchase a machine, or I'll be looking for another clinic that offers it. You can read about it here: http://calmarett.com/ I'm pregnant right now. 9 weeks, we were on birth control, but I guess we're one of the 1%! :) We're happy about adding another little one to our family, but I've had to completely go off of Epitol, and have tapered to only 50 mg of Lyrica and 60mg of Cymbalta a day. After the baby is born and weaned, which I'll sadly have to do early as many drugs are transmitted through breast milk, I'll pick up on the drug regimen again unless I've found a place to do the scrambler therapy.


Tizzy said:

Hi ,try putting antibiotics in the tiny search box on top right of discussion page! Unfortunately you are not the first to lament this and I agree the warnings are inadequate . Some people are quick to say that you were sick that's the issue not the antibiotics- but as they admit the issue on the box this seems a daft point. I am sorry you have this , if I knew I had a predisposition to neuropathy I or perhaps how strong the link I would not have gone near the stuff. You are young and maybe getting early treatment( and this would be early for EM) will settle the nerves before pain pathways are over sensitized .
Lyrica , cymbals , gabapentin etc etc reduce excitability of nerves and generally pain. I have found ultimately pain specialist helped me most. Good luck , you are at least well onto it!!

How awful for you Blue.I suffered with terrible migraines for years leading up to EM.

Isnt it ironic that migraine medications reportedly ease facial flares in some sufferers- especially the triptans. Never had that luck myself but..... This is certainly NOT a one size fits all syndrome!

Antibiotics - what fluoroquinolones and penicillan, cephalosporins, aminoglycosides, teracyclines and marcolides.??..Maybe its a base component you allergic to like sulfur, magnesium, zinc, etc

Hope that eye is ok

Big hug

mads


blue said:

Three out of four antibiotics I've taken in the last 12 years have caused my skin to burn. Not sure what families they belong to. I caught an eye infection yesterday (doctor told me they are rife in sydney at the moment) and he has given me an antibiotic gel to put into my eye. First application was a few hours ago - will I flare or not?

I do associate the start of my erythromelalgia with taking Naramig for migraine. The warning on the packet said

'Transient flushing' which happened to me, but then I started flushing/burning more frequently.

Coincidence?

blue

Heather,

Would you like me to put you in contact with EM sufferer who has coped during pregnancy?

God bless

mads

Heather said:

Thanks, Tizzy. I've tried gabapentin, and it didn't really do much. Epitol helped more. Also the Lyrica/Cymbalta combo. I agree, my pain specialist has been my most helpful doctor. She had me participate in a clinical trial of something called scrambler therapy, and it really helped. I'm hoping she decides to purchase a machine, or I'll be looking for another clinic that offers it. You can read about it here: http://calmarett.com/ I'm pregnant right now. 9 weeks, we were on birth control, but I guess we're one of the 1%! :) We're happy about adding another little one to our family, but I've had to completely go off of Epitol, and have tapered to only 50 mg of Lyrica and 60mg of Cymbalta a day. After the baby is born and weaned, which I'll sadly have to do early as many drugs are transmitted through breast milk, I'll pick up on the drug regimen again unless I've found a place to do the scrambler therapy.


Tizzy said:

Hi ,try putting antibiotics in the tiny search box on top right of discussion page! Unfortunately you are not the first to lament this and I agree the warnings are inadequate . Some people are quick to say that you were sick that's the issue not the antibiotics- but as they admit the issue on the box this seems a daft point. I am sorry you have this , if I knew I had a predisposition to neuropathy I or perhaps how strong the link I would not have gone near the stuff. You are young and maybe getting early treatment( and this would be early for EM) will settle the nerves before pain pathways are over sensitized .
Lyrica , cymbals , gabapentin etc etc reduce excitability of nerves and generally pain. I have found ultimately pain specialist helped me most. Good luck , you are at least well onto it!!

Hi mads,

i have POTS and one of my worse symptoms is very bad constipation. My gi doc says it is extreme but that he sees other people like me, mostly women. I used to take a large dose off magnesium sulfate (epsom salts)once a week to empty my bowels and it always triggered migraine and EM at a time when EM was mostly controlled by avoiding foods which contained certain natural and/ artificial chemicals.

One day I took my weekly dose of magnesium sulfate, spent the day at home close to the loo, went red as i usually do but by the next day the skin on my face, still red, had what looked like small raised pustules on it. Went to a gp and he said Rosacea. Neither of us had touched the 'pustules'. I came home and looked in the mirror nd touched one and it just peeled off - it was dead skin. Over the next ten days my face continued to peel. It stopped when I introduced predisolone but started up again when I stopped taking it. After ten days it resolved.

I finally got into see my allergist who said 'no more magnesium sulfate' - like i needed telling, lol. She did say it would probsbly happen again without the mg.sulf.I am not sure if it is the magnesium or the sulfate. If I had to guess I'd say the sulfate. It has happened again but never as extremely as it did the first time.

It is one of the annoyances of my life that I need to take laxatives as they either cause EM flares, or migraine or in one case, anaphylactoid reaction ( we think it was the laxative but not certain). Some times I can get away with out needing laxatives now but I always go through periods of needing them (I need them now and am experiencing more, worse EM flares as a result, like everyone I just have to suck it up). At least I know they are a trigger for EM.

like everyone else here I wonder what causes the flares I can't explain away by what I've eaten, med I've taken, exercise I've done, hot/cold weather etc. In a way I guess I am lucky that I know to avoid certain things but generally EM, POTS etc... are incredibly perplexing.

But I do appreciate that I have days when my skin is not flaring badly and I can get dressed and go out and i would hardly know i have EM.

I know some people with EM don't have that experience. And medication does help my migraines to a degree.

So far no reaction of any kind to they antibiotic gel, so Yay. But not sure my eye is doing any better yet. Not so Yay. I was like a grumpy bear yesterday as my eye, of all things, as little a problem as it really is, just seemed like the last straw.

Thanks for your input mads, you are very knowledgeable to pick up the sulfur, magnesium stuff. I've had to spell it out for many doctors. And you picked it straight away.

blue

.


mads said:

How awful for you Blue.I suffered with terrible migraines for years leading up to EM.

Isnt it ironic that migraine medications reportedly ease facial flares in some sufferers- especially the triptans. Never had that luck myself but..... This is certainly NOT a one size fits all syndrome!

Antibiotics - what fluoroquinolones and penicillan, cephalosporins, aminoglycosides, teracyclines and marcolides.??..Maybe its a base component you allergic to like sulfur, magnesium, zinc, etc

Hope that eye is ok

Big hug

mads


blue said:

Three out of four antibiotics I've taken in the last 12 years have caused my skin to burn. Not sure what families they belong to. I caught an eye infection yesterday (doctor told me they are rife in sydney at the moment) and he has given me an antibiotic gel to put into my eye. First application was a few hours ago - will I flare or not?

I do associate the start of my erythromelalgia with taking Naramig for migraine. The warning on the packet said

'Transient flushing' which happened to me, but then I started flushing/burning more frequently.

Coincidence?

blue

Hi again mads,

That is why I liked taking ergotamine for my migraines so much. It would constrict blood vessels - and I did not flare, usually. But my specialists yanked me off it because of my other health problems. I was in hopspital and they said 'no more, ergotamine is bad for you' - it did give me Transient left side chest pain. I had to take their word for it but it was helpful with both migraine and POTS, and EM. The triptans are a whole other bad story for me.

blue


blue said:

Hi mads,

i have POTS and one of my worse symptoms is very bad constipation. My gi doc says it is extreme but that he sees other people like me, mostly women. I used to take a large dose off magnesium sulfate (epsom salts)once a week to empty my bowels and it always triggered migraine and EM at a time when EM was mostly controlled by avoiding foods which contained certain natural and/ artificial chemicals.

One day I took my weekly dose of magnesium sulfate, spent the day at home close to the loo, went red as i usually do but by the next day the skin on my face, still red, had what looked like small raised pustules on it. Went to a gp and he said Rosacea. Neither of us had touched the 'pustules'. I came home and looked in the mirror nd touched one and it just peeled off - it was dead skin. Over the next ten days my face continued to peel. It stopped when I introduced predisolone but started up again when I stopped taking it. After ten days it resolved.

I finally got into see my allergist who said 'no more magnesium sulfate' - like i needed telling, lol. She did say it would probsbly happen again without the mg.sulf.I am not sure if it is the magnesium or the sulfate. If I had to guess I'd say the sulfate. It has happened again but never as extremely as it did the first time.

It is one of the annoyances of my life that I need to take laxatives as they either cause EM flares, or migraine or in one case, anaphylactoid reaction ( we think it was the laxative but not certain). Some times I can get away with out needing laxatives now but I always go through periods of needing them (I need them now and am experiencing more, worse EM flares as a result, like everyone I just have to suck it up). At least I know they are a trigger for EM.

like everyone else here I wonder what causes the flares I can't explain away by what I've eaten, med I've taken, exercise I've done, hot/cold weather etc. In a way I guess I am lucky that I know to avoid certain things but generally EM, POTS etc... are incredibly perplexing.

But I do appreciate that I have days when my skin is not flaring badly and I can get dressed and go out and i would hardly know i have EM.

I know some people with EM don't have that experience. And medication does help my migraines to a degree.

So far no reaction of any kind to they antibiotic gel, so Yay. But not sure my eye is doing any better yet. Not so Yay. I was like a grumpy bear yesterday as my eye, of all things, as little a problem as it really is, just seemed like the last straw.

Thanks for your input mads, you are very knowledgeable to pick up the sulfur, magnesium stuff. I've had to spell it out for many doctors. And you picked it straight away.

blue

.


mads said:

How awful for you Blue.I suffered with terrible migraines for years leading up to EM.

Isnt it ironic that migraine medications reportedly ease facial flares in some sufferers- especially the triptans. Never had that luck myself but..... This is certainly NOT a one size fits all syndrome!

Antibiotics - what fluoroquinolones and penicillan, cephalosporins, aminoglycosides, teracyclines and marcolides.??..Maybe its a base component you allergic to like sulfur, magnesium, zinc, etc

Hope that eye is ok

Big hug

mads


blue said:

Three out of four antibiotics I've taken in the last 12 years have caused my skin to burn. Not sure what families they belong to. I caught an eye infection yesterday (doctor told me they are rife in sydney at the moment) and he has given me an antibiotic gel to put into my eye. First application was a few hours ago - will I flare or not?

I do associate the start of my erythromelalgia with taking Naramig for migraine. The warning on the packet said

'Transient flushing' which happened to me, but then I started flushing/burning more frequently.

Coincidence?

blue

Hi Jenn,

I am so sorry to hear about your experience with antibiotics and EM. I just experienced a bout of EM a week after discontinuing moxifloxacin early (due to peripheral neuropathy) prescribed for sinus infection. I find it ironic that I quit on Saturday May 14, and on that Monday the FDA announced new recommendations for fluoroquinilones - basically don't prescribe unless really needed as risk for PERMANENT nerve damage was too great. My doctor warned of nothing more than a very rare chance of achilles rupture. And told me that I could take ibuprofen, and never warned me about corticosteroids (I had been taking Flonase for at least two weeks). I believe this combination of nsaids, steroids and fluoroquinolones was a terrible cocktail that resulted damaging my nerves and blood vessels. I'm worried! and I am wondering if you are still suffering, or have enjoyed any remission? If you are still active on this site, please let me know. Thank you, and best wishes for recovery and well being!