Triggers: searching for answers about fluroquinolones, cholesterol etc

Hi - I seemed to have developed very debilitating EM symptoms after taking Ciprofloxacin 12 months ago. But it is ambiguous as I also have hypercholestoleamia, am menopausal and had an episode of hyperthyroid around the time I was given Cipro - so the exact cause is unclear. It all seemed to go into remission last year 9 months after the drug but then re-occured with vengence as I withdrew from long term Valium use this year. I have burning all the way up my legs when it’s flaring and burning into my pelvis - I also have episodic burning/freezing and extreme skin sensitivity. All my nerve conduction tests and MRI’s were normal. Anyone else develop EM after fluroquinolones? I’m very depressed and worried about future prognosis as it has resurfaced - is remission possible?

Yes, I would say remission very possible but you will have to work at it. Swimming immediately comes to mind, hopefully you are close to a pool.
I have seen some nasty reactions to Cipro , but I think unlikely the flare is still with you from cipro alone after one year. More likely a perfect storm scenario with reaction from cipro, menopause in particular and now the stress of COVID and the increasing temperatures as you head into summer.
Try a cool swim or at least cool showers or baths, you could even try the opposite as a sort of Bobs protocol situation, hot swim, then cool shower. Maybe try magnesium supplement, think about mexiletine, have a good read through this web site using the search engine above.
Giving up diazepam (Valium) is a clue; it was great you did this and illustrates you are capable of excellent self discipline and determined, but personally I wonder if giving up put a lot of strain on your nervous system. If the occasional diazepam 2mg means you have a dramatically better lifestyle then personally I would be ok with that.
The very depressed comment worries me a lot and knowing Aussies you may be understating this. Please talk to your doctor and friends. Talk it out and seek help. We are with you and we all care deeply for you. All the best, let us know how you are getting on.

Sorry Fantango, forgot to mention HRT. Debate rages about the safety and wisdom of hormone replacement therapy but you and your doctor may decide the benefits outweigh the risks.
HRT should stop the hot flushes which I am sure exacerbate your problems.
Incidentally I was going to name my fishing boat Male Menopause, but my wife would not allow it. “Coastguard, this is Male Menopause, just heading out for a hot flush, expected back at 1300…”
Ended up calling her Pharmasea . Boring.

Sorry to go on but I see that medical marijuana is legal in Aussi so you and doctor may choose to discuss this possibility. I am sure it has it’s place and suggest you run it through the search engine above.

Thanks for your responses Kiwi. I’m laughing at the Male Menopause boat :slight_smile: : HRT has been very unfriendly to me - oddly, it made my symptoms worse and gave me vestibular migraines - so that’s not a possibility. I’m sure the vasomotor instability of menopause and hormone imbalances are part of the picture. A few months before Cipro my feet had a couple of instances of random heat which then disappeared again and I have always had hand, face and ear flushing - so perhaps EM was nascent and ready to roll given the right triggers. :frowning: Though a geneticist said there was no indicator that my EM was genetic (I’ll double check that) It’s been a very shocking severity of onset - after Cipro, couldnt walk for 3 months, neuropathy first then EM. It did go into remission last year after I started swimming (so interesting you suggest that) - I ceased in winter because I can only do wild water. And yes - astute of you about depressed comment - my mental health is under care. Mysterious that it reoccured as a withdrawal symptom from Valium. When you say you’ve seen some nasty responses to Cipro - in what capacity? Curious.

Apologies, I see cipro can cause long term heat sensitivity issues, but interesting you went into remission while swimming. I use a wet suit in winter to allow all year around swimming, along with booties, gloves, and you can get head gear. Most heat is lost through head and feet and hands. Don’t worry about how you look, we can’t all be Barbies and Ken’s. The real hero’s for me at the pool or beach are those who huff and puff their way around (and sometimes sink). The main thing is to be out there trying. There are different thicknesses available of wet suits, seek advice from your surf shop or on line. Second hand wet suits readily available.
I note that oestrogen patch HRT cause way less headaches. There are different HRT treatments.
I note that hyperthyroidism can cause sensitivity to heat as well.
Ciprofloxacillin is on the world health organisation essential lists, and as such we used to buy it in bulk, as a generic, from international dispensary association The Hague, and ship it down with our other medicines to the hospital we were working in Africa. It saved thousands of lives but the case I can never forget is a friend of mine who was a fitness freak, took cipro, but died just after a vigorous swim. No proof it was Cipro but I see tendon rupture is possible. I see there is court action being undertaken with Cipro for side effects, but this will not involve the generic manufacturers I presume.
I wasn’t sure if you were definitely diagnosed with Erythromelalgia but figured if you asked for mexiletine that would be verified by your doctor. If you do take mexiletine, make sure you read the reviews in the search engine above. I haven’t taken mexiletine yet but probably will. If I did I would take omeprazole as well to stop the stomach upset, and chew or suck a Gaviscon peppermint flavour tablet as needed, but never swallow a gaviscon whole as when I did I got a bad stomach discomfort.
I would also recommend the DermNet NZ site Erythromelalgia as a good summary.
If you are concerned about medicine interactions go to The NZ formulary site, push launch, push interactions, type in your medicines.
I find I have to be quite intentional and proactive with Erythromelalgia. The common thread seems to be we all have to try different things, be open minded and within reason, experiment.
I truly believe everyone is very important and has a valuable part to play in life. There is no doubt in my mind you will get better Fantango.
If you put your finger on KIWI it should come up that I am a retired pharmacist. It takes a while to get your head around the web site but it is very good.
How can I improve? I want to help as many as possible. Do I go on too much? Help me to know how I can improve please.

Hi. I found the website floxiehope.com very informative, then put Peggy’s story in search.
Peggy used a regime of magnesium, calcium and vitamin D3 which helped her a lot.

Hi - I had to stop looking at floxie hope as it tipped me into deep depression at the time - I still live in terror wondering what has been done to my nervous system and tendons in the long term. I take Magnesium and other supplements daily - its interesting that all the symptoms returned after ceasing Valium - I wonder if its to do with GABA. I’m still hoping remission may be possible as it cleared up last year - my terror is that some progressive damage will play out post Cipro as it isn’t acknowledged as a risk in my country, so there was outright denial and no opportunity to have a conversation with anyone about it in the medical field.

It can’t hurt to add calcium to the regime though - thanks - just re-read Peggy’s story.

I would encourage you to make a report by email to the Australian adverse medicines reactions website, the address is in their website. This could help others in the future. They already have a warning out for tendon damage with cipro. I believe your report will be treated with respect and credibility especially considering the USA now has a black box warning for cipro.

I have already reported. :slight_smile: