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Could antibiotics be a trigger for FFA?
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
Replies to This Discussion
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Permalink Reply by Donna on
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Hi MJ. I had developed gastrointestinal problems that lasted a few years and then were resolved when a doctor of functional medicine had me go gluten free. His belief was that the FFA and symtoms of dry mouth and dry eyes were autoimmune triggered by gluten and stress very liekly playing a role too. i have beem GF for nearly three years and gastro good and dryness better and FFA progression slow but last derm appt about 6 months ago still shows inflammation - darn!!
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Permalink Reply by Anne Louise on
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Donna, that is interesting. In the lecture I attended the speaker did say that long term oral contraceptives damage the gut flora profoundly, however I haven't found her reference to any study reflecting this statement. Essentially though from what I've been reading, loss of proper functioning of the intestinal barrier is a key component to developing autoimmune disease, in addition to genetic and environmental factors. Consider this quote from Allessio Fasano, chief of pediatric gastroenterology at MGH here in Boston: "There is growing evidence that increased intestinal permeability plays a pathogenic role in various autoimmune diseases including [celiac disease] and [type 1 diabetes]. Therefore, we hypothesize that besides genetic and environmental factors, loss of intestinal barrier function is necessary to develop autoimmunity."
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I just wish we could put these pieces together before any of us loses any more hair! This is such a random and confounding, frustrating and depressing disease.
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Permalink Reply by Classical Anne in NC mountains on
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Anne, I am intrigued by your post suggesting a possible connection between antibiotic use and FFA. FIRST, I think I need to change my forum name, since there are now at least 3 of us signing Anne or Annie. I shall call myself Classical Anne, as music is still my drug of choice.
I'm not sure how many specifics I could gather for you -- my medical history is quite long and complicated. But I can say without hesitation that I was on broad spectrum antibiotics at least 4 times a year for nearly 30 years, due to constantly recurring urinary tract infections. Eventually, age 48, I was finally diagnosed with Interstitial Cystitis -- an incurable disease of the lining of the bladder, with all the symptoms of a UTI except that there is no bacterial infection. IC is a very painful disease, thought to be autoimmune, and still tops my list of more than a dozen chronic diseases. The most successful prescription for the management of my IC is a potent and exorbitantly expensive drug [Elmiron is now nearly $1,000 a month] of which I have taken 6 capsules daily for about 12 years now. In its patient information leaflet it lists Alopecia as a not uncommon side effect. I must consider myself very lucky indeed, considering that Rx along with all those years of antibiotics, that I have had so little hair loss to date. More than enough to trouble me, but still nearly invisible to others, thanks to a thoughtful hair stylist and lots of pretty scarves and headbands.
I was also told to pre-medicate [usually with amoxicillin] before every dental appointment, due to MVP mitral valve prolapse. Fortunately, after 10 or so years with that treatment, it was apparently discovered to be only minimally required or effective. I stopped that particular antibiotic treatment about 5 years ago. Thanks to several of my ailments and their medications, I have chronic clinical dry mouth. As a result, I was [and still am] having considerable issues with gum line decay, and might have gone on taking antibiotics several times a year forever.
I have also been on various proton pump inhibitors for 10 or more years, due to the typical G.E.R.D. reflux that many deal with at my age. [I had early menopause at 43 and am now 64].
In 2012 I had 2 rounds of broad spectrum antibiotics [I shall never forget that the second one was Keflex, but would need to search my records to discover the first] for a surprisingly painful gum infection. All these factors considered, it should have been no surprise to my doctors when I developed a very serious C-diff infection in August of that year. I fell unconscious in my bathroom, totally dehydrated and running a high fever. The EMTs that answered my husband's 911 call soon declared me in septic shock. I was rushed to the hospital, where I spent the next 10 hours in the Emergency Room, in and out of consciousness, before being stabilized and admitted to ICU for several days, including 2 blood transfusions. My husband was told that it was touch and go in the ER, that it might have been my last day on earth. I am eternally grateful to have survived.
You might well wonder how I got to such a state as the night I passed out, without seeking medical attention. Fact is, I had been to my GP that very morning, feeling utterly miserable. But because Crohn's is another of my chronic diseases, I think we both assumed that was the cause of the increase in diarrhea. Looking back, it is no wonder that I had successfully eliminated nearly all of the 'good flora' with antibiotics and proton pump inhibitors.
I am happy to have discovered this forum, and look forward to learning more from other women with this challenge. I wish you the best.
Classical Anne
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Classical Anne I love your new name! I too find music to be a great drug, much more preferable than the other drugs I am on. You have quite an extensive medical history; I am sorry that you have to add FFA to your diagnosis list. With your added history we are now up to 15 of us who have been on intensive antibiotics. I go to the support group in Boston tomorrow. It will be my first time and I'm a bit nervous and don't quite know what to expect, but I do hope Dr. Lynne Goldberg, the doctor who runs it, will be able to answer some of my questions. She was at the national CARF (Cicatricial Alopecia Research Foundation) conference a few weeks ago, so perhaps there is some new research findings she can share with us. Then Monday I see my dermatologist for the first time since my diagnosis two months ago. On Wednesday I get my eyebrows tattooed. So I have a big week ahead of me! If any of you gals are praying people I would greatly appreciate a few words to the Man Upstairs on my behalf.
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Anne,
I will definitely include you in my prayers! Will look forward to hearing how everything goes.
MJ. -
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Thanks MJ!
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Anne, glad you like my name -- we Annes with that treasured 'e' have a special bond! Thank you for your efforts in gathering possible answers to our concerns. I do hope you feel welcome and supported at Dr. Goldberg's meeting. I will be glad to give fuller medical details if that turns out to be helpful.
As you say, I have a complex and lengthy medical history -- but here's what may surprise you, as it did me. All of my other diagnoses are internal, some of them significantly impacting my daily life. But the first time I came close to saying "Why me?" was with the FFA. I am not a vain person, as I'm sure many sufferers are not. But the prospect of losing so much hair was such a visible threat, and it depressed me more than all my other ailments.
My response to that threat has been to create a full 'wardrobe' of scarves and wide headbands. Just yesterday I got my sweet husband to put up 2 additional belt/tie racks for my closet collection. It does make me smile to open my closet and see all the pretty fabrics. I have several websites I could share for finding head covering solutions. But the best source for me has actually been my husband's. He is manager of our local Hospice Resale Shop and I visit him regularly to check out the latest donations of scarves. Of course I gather only what I think will survive the washing machine, and so far all of them have [I do use mesh lingerie bags to protect them from other items in the load]. And then came a little brainstorm: I noticed all the pretty fabric belts and sashes in the store [mostly 25 cents] and started bringing them home, mostly the kind that tie with 2 rings on one end. Some I just cut the rings off, patch the end, and tie them around my head like a scarf. A few work very well with the buckle still on, so easy to cinch. They leave a nice tail to drape over the shoulder and look quite fashionable. And no one has guessed they're actually belts. So tell your friends to visit the thrift shop, bring some home and pop them in the laundry!
With love and prayers,
Anne
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I came across this video and thought some of you might be interested in it. While it does end up being an advertisement for Keybiotics I think the information is important and you could really apply any probiotic; it doesn't have to be that brand. It is about 30 minutes long but I really thought it was worth the watch.
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Ellen, thanks for sharing this. As you said, it is an infomercial for their product, but it does summarize the pathology of a leaky gut and how probiotics can be a helpful remedy. I thought it interesting how they boast 37 billion cfu's in each capsule...I just started Ultimate Flora ( was rec. on this site) this week and it has 50 billion cfu's per capsule. I had been taking a cheap generic brand this past month that had only 1 billion. From what I read, the more bacteria the better...I hope Ultimate Flora does the trick!
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Hi Everyone,
As promised, I wanted to post what happened with the immunologist doctor and researcher that I saw a couple of months ago (you should be able to scroll back and see my earlier posts). I went back today for my blood test results and there were some findings! He was actually quite surprised, since other than this FFA thing, I seem perfectly healthy. I have the 10 pages of results (he ran a gazillion different tests) sitting here in front of me, but I will try to summarize them. My Immunoglobulin G (overall Immunoglobulin...we have many different immune systems in our body, who knew?) was very low. In a "normal" person, this number is over 1000 mg., but mine was 750, which does mean that parts of my immune system are definitely compromised, and therefore other parts of my immune system are trying to compensate for the deficient ones. Anyway, he told me that he really cannot say if this has anything to do with my FFA and hair loss, although since the flu vaccine seemed to be a trigger for mine, he suspects this could all be related. He called this "Common Variable Immune Deficiency," Subclass 2 and 3 deficiency which is a specific antibody deficiency. Bottom line is that there is a chain of things that happen in our body when cells are produced (about 6 steps) and the blood tests he ran on me were on the most common things. Now, since he knows specifically where the deficiencies are, he has ordered MORE in depth blood tests in those specific areas. Basically, he wants to find out where the breakdown is occurring...between which steps. I know that was probably really rambling and complicated, but I really feel he/we could be "onto something" here. If anyone wants to go have these specific tests ran (and I am not saying it would be the same for everyone, since it seems like we all have different triggers, etc), please let me know and I would be happy to send the specific tests he ran. Anyway, I have to travel now for a couple of weeks, but as soon as I get back, I will have the other blood work done and then I go back to him again in June to see where we go from here.
Oh, and, in the meantime, I don't know what is going on with my hair, but I have so much more of it around the front now! I started taking a liquid probiotic about six weeks or so ago, and I swear I have more hair..not where the scarring is, but it's enough to cover the area much better. I actually mentioned this to the doctor today and he agreed that this could be helping. He explained why this might be helping, but now I can't quite remember what he said.
Okay, that was long enough :). I wish you all a good weekend and for all you mom's...happy Mother's Day!
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