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I thought I would start a post dedicated to tracking antibiotic use prior to FFA diagnosis. I reviewed recent comments and counted up ten of us that have been on several rounds of antibiotics prior to our FFA diagnosis! I suspect there are more. By having this post it will catch the eye of those members that don't visit this site that often and hopefully they can add their background too.
The working theory is that these broad spectrum antibiotics wipe out the good bacteria in the gut, namely those good guys that help provide immunity. This is why diarrhea is often a side effect of these antibiotics. I want to add that the tetracyclines that many of us are on are generally not as intense with gastrointestinal side effects and likely are not the culprit. I don't want everyone panicking and stopping the treatments their dermatologists have recommended!
This is more of an attempt to gather information and I intend to bring this to a CARF support group meeting in Boston at the end of this month. I have never been to one, being such a newbie in all of this, but from what I understand Dr. Lynne Goldberg usually attends these meetings.
I thought we could list the name of the antibiotic, length of the course, the infection being treated, and the length of time prior to FFA diagnosis (or when we first started noticing symptoms). I noticed Jen mentioned that she was on Omeprazole, an acid reducer, two months prior to noticing her hair loss. Perhaps we could include that class of drugs as well, since they also alter the normal flora in the gut.
I called my pharmacy yesterday to confirm the drug names and dates. In December 2011 I was on Amoxicillin for 10 days and immediately after that Augmentin for 10 more days to treat a middle ear infection. For six months after that I suffered from chronic yeast infections. The following fall 2012 (approximately 10 months after antibiotic use) I noticed my eyebrows thinning but chalked it up to aging. They were very thick and full so it likely was happening for a while before I noticed. I was diagnosed with FFA on February 25 2014, a date unfortunately that I will never forget. : (
The following article was just posted days ago and theorizes that perhaps the antibiotic in conjunction with the infection could precede autoimmune disease. It is rather technical, but the nurse nerd in me loves reading these things!
http://www.sciencedaily.com/releases/2014/03/140331153520.htm
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It is called Inner-Eco; I usually get it at Whole Foods or Lazy Acres. Here is the link: http://www.inner-eco.com/
Thanks, Maddy, for such useful information. I would actually like to know what specific tests he ran that may have relevance to FFA. I already have so many autoimmune disorders that I wonder if there's a common factor. Congratulations on getting more hair around the fringe! I'm definitely ready to try some probiotics, too.
Hi Anne,
The main blood tests that showed out-of-range findings for me were in Immunoglobulin G, specifically in Subclasses 2 and 3 (there are four Subclasses). I was low in both 2 and 3...actually quite low in both of those. Also, under Streptococcus Pneumoniae, there are fourteen Serotypes, of which, in a perfectly healthy adult all fourteen should be 1 or above...but I only had one that was above one (Serotype 4) and all the rest were much lower.
Basically, the blood tests that were run that had a possible connection to FFA were:
Immunogobulin G (have to make sure they run all the four Subclasses too, not just the overall).
Streptococcus Pneumoniae (have to run all the 14 Serotypes).
Yes, that is a good possibility. He is going to re-run the blood work (to make sure) and do more in depth tests now to see where the breakdown is taking place. I didn't know much about any of this, but have been doing a lot of reading over the weekend. Kind of scary.
Maddy, thanks again for sharing specific data. I believe it's time for me to reconnect with an endocrinologist, as I am now pre-diabetic. Or would you suggest a different kind of specialist? We all need someone to connect the dots!
I have been seeing an endocrinologist for about seven years now, and she did not connect these dots. She acknowledged that the hair loss could be related to my immune system, but she didn't take it much further since all my general blood work on autoimmune stuff came out normal. She did not do in depth immunology blood work. That is why I went to an immunologist. Since FFA seems related somehow to our immune systems, I figured I might get some answers there. I don't know the answers though...maybe you could just ask your endocrinologist to do these types of tests?
Maddy and Anne L, I am so grateful for your expertise and intelligent approach to our problem. Thanks for your suggestions and support!
I think this is an important discussion, as it's evident quite a few of us have had multiple antibiotics in our adult history. I left a rather long [no, really long] comment on the main FFA site yesterday that touched on antibiotic use [and abuse]. Today I'll just repeat a small bit and add a summary of additional antibiotic complications.
One of my most difficult autoimmune diseases is Interstitial Cystitis [IC]. It was diagnosed 17 years ago, though it evidently began sooner. Throughout adulthood I suffered with chronic bladder infections, up to 10 or so a year. As a result, I was prescribed way too many antibiotics, developed allergies to some, total resistance to others. It is thought this indiscriminate use of antibiotics may have contributed to my eventually developing IC. I think it may have also increased my susceptibility to autoimmune disorders in general, including FFA.
Two years ago, I had a difficult gum infection and was talked into taking another antibiotic. The first round of amoxicillin failed to relieve it, so I was prescribed Keflex [much against my better judgment]. The infection cleared, but before I finished the second prescription I developed a near-fatal C-diff infection. Because I also have autoimmune Crohn's disease, I ignored the symptoms for a few days, thinking it was a nasty flare up of the Crohn's. Eventually, though, I lost consciousness, and when my husband couldn't revive me, I was rushed to the Emergency Room for 12 hours uphill struggle to stabilize, followed by several days in the ICU, blood transfusions, etc.
The medical consensus was clear: it was the antibiotic, which eliminated too much 'good flora' while eradicating the bad bacteria. They have said it was not Keflex in particular, but any broad spectrum antibiotic may have the same effect for me from now on. Hard to imagine refusing antibiotics the rest of my life, but I am told if I drink TONS of water during any other prescription, I may avoid the dreaded C-diff. [Of course, you can imagine what tons of water feels like on my diseased bladder.]
Knowing now that stress is a trigger for FFA, I thinks it's obvious where mine began. My eyebrows had been thinning, but like many others have said, I assumed it was just another joy of aging. However, after that medical crisis, it wasn't long before they were completely gone, and the inflammation along my frontal scalp became evident.
We all have occasional need for antibiotics, for one infection or another. I certainly do not advocate refusing them! They can be life savers. But I absolutely agree that my long history of mixed antibiotics set the stage for my recent challenges. And I learned the hard way just how critical it is to fully hydrate through the prescription -- keep my systems thoroughly flushed, don't allow the antibiotic to accumulate, destroying good bacteria along with the bad.
Hope this makes sense.
Best wishes to All
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