I encourage every person who has been hurt by fluoroquinolone antibiotics (or any other pharmaceutical) to tell his or her story.
Telling your story of pain caused by fluoroquinolones can be cathartic and relieving. In writing your story, you are saying to yourself and others, “My pain is real. I was hurt by a prescription drug. It happened to me. Listen, because this is important.”
These stories ARE important! Patient stories are important for advocacy, for warning others, for changing minds, and more. The world will be a better, safer, place if physicians and patients alike are aware of the adverse effects of fluoroquinolones and all other drugs. Patient stories help people to understand the severity of adverse drug reactions, so that they understand the real risk associated with each prescription drug. Neither our doctors nor our friends are psychic, and they need to be told about adverse drug reactions in order to understand them. True stories about the effects of fluoroquinolones on individual lives vividly illustrate the risks of these drugs—much more than studies, or data, or warning labels.
Patient stories can also help researchers to understand the real-world effects of pharmaceuticals, and the direction that a researcher chooses to look can be influenced by patient reports and stories.
Because patients reported their symptoms to the FDA, the warning labels for fluoroquinolones have changed to note that peripheral neuropathy is a potentially permanent side-effect of fluoroquinolones. Patient reports and advocacy also led to the November 5, 2015 FDA meeting where the Antimicrobial Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee decided that the current warnings on fluoroquinolone labels are not sufficient. We still have a long way to go, but it should be acknowledged that patients, and their stories, are driving the FDA to action, and that is quite special and unusual.
Reporting Fluoroquinolone Toxicity to the FDA
Please, even if you don’t tell your story to anyone else, report your adverse reaction to the FDA. Instructions on how to report your reaction to the FDA can be found here – http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm.
Telling Your Story of Fluoroquinolone Toxicity on the Internet
If you would like to tell your story on a web site, there are a few options:
- I (Lisa Bloomquist) manage the web site, fqwallofpain.com. If you would like to share your story of pain caused by fluoroquinolones on www.fqwallofpain.com, please Contact Me.
- Tami Lucas manages the facebook page for The Fluoroquinolone Wall of Pain. You can contact her through the facebook page. (Yes, there is quite a bit of overlap between the facebook page and fqwallofpain.com. Tami and I collaborate.)
- You can submit your story to http://www.fluoroquinolonestories.com/. There is a “click here to submit” button on http://www.fluoroquinolonestories.com/.
- You can post your story on http://www.hormonesmatter.com/. Several people have written about their experiences with fluoroquinolone toxicity on Hormones Matter. Here are some examples: Fluoroquinolone Neuropathy Feels Like Acid Burning and Electrocution, From Fluoroquinolone Reaction to Glabrata Infection, and Now, Lyme Disease: A Medical Nightmare, The Doctor Said Not to Worry About Levaquin Warnings, and more. Information about how to submit your story to Hormones Matter can be found on http://www.hormonesmatter.com/write-for-hormones-matter/.
- You can start your own website or blog. Many people have told their stories through their personal websites/blogs. Some of those sites can be found on https://floxiehope.com/fluoroquinolones-links-resources/. The more, the merrier! I created floxiehope.com through www.wordpress.com. I had no idea what I was doing, and it turned out alright. If you are interested in starting a site but are intimidated by not knowing how to do it, I suggest starting with wordpress.com. It’s pretty easy.
The Fluoroquinolone Effects Study
Please, please, please also tell your story to the researchers who are conducting the Fluoroquinolone Effects Study. The Fluoroquinolone Effects Study is being led by Dr. Beatrice Golomb and it is through UCSD. The Fluoroquinolone Effects Study is a chance to tell your story in your own words to scientists who are studying fluoroquinolone toxicity. More information about the study can be found here – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html.
Media Coverage of Fluoroquinolone Toxicity
Hundreds of people have spoken out to the media about fluoroquinolone toxicity. Thank you to each of you who told your story! I encourage all of you to reach out to the media, because even though many of our stories have been told, many more are needed. Write letters and emails, call your newspaper editors and tv reporters. Please do whatever you can to amplify your voice when telling your story.
People are Listening
People are listening to our screams and our stories. I regularly hear from people who say something along the lines of, “I requested a safer antibiotic because I heard from you that Levaquin is dangerous.” I hear from doctors, nurses, pharmacists, and other medical professionals who are getting information about fluoroquinolone toxicity from Floxie Hope. The number of people in The Fluoroquinolone Toxicity Group on Facebook has increased steadily to almost 5,000 people. Many of those people share information about fluoroquinolone toxicity with their friends. The word is getting out, and that’s a very good thing!
Thank you to all of you who are telling your stories of pain caused by fluoroquinolones! These stories are important, and I even think that it’s healing for you to tell your story.