Hi, I hope it's OK I'm posting this. PBS News Hour did a story on this last week. I think it's important to increase awareness.
http://www.pbs.org/newshour/bb/health/jan-june11/antibiotics_06-16.html
I have been completely disabled with severe generalized tendinitis since March of last year. Symptoms started on Day 5 of treatment with a quinolone.
Many "floxed" victims are eventually diagnosed with Sjogrens, as sjogrens-like symptoms often start Month 6-9 post floxing (and I am one of them).
I don't know if I was "pre-autoimmune" waiting for a trigger, or the fq's caused the autoimmune like symptoms (and now diagnosed with Hashi's). Either way, I am worried the AI folks might be particularly susceptible.
Please be aware of this possibility, and make an informed decision before using this class of antibiotics.
Thank you Bella, very good information.
Thanks, good information. I don't know why the doctors don't want to prescribe the old antibiotics anymore. They seem to be safer and they are definitely cheaper.
Anna
Thank you! I will check this out. I had a severe reaction to Levaquin last year and it's like it threw my autoimmunity into overdrive (I already had Sjogren's). I now have chronic vasculitis and fibromyalgia, and something else is still going on. I suspect tendinitis.
I am so sorry you are dealing with this. I know how horrible it is. That was one of the most miserable days of my life, and it took a while before I was able to function normally. Ok, well, I'm still not normal. ;D
I refuse to take anymore fluoroquinolones unless my life is in danger. The last time I took them they caused my sciatica to go crazy. You can get permanent nerve damage from quinolones. ... and of course, tons of other permanent problems.
Hmmmm.....I have taken a lot of Cipro in my life! It is one of the few antibiotics I am not allergic to:(
Thanks for the info!
I have taken Cipro and Flagyl for intenstional infections, I had four different ones - bacterial, viral, parasites. Had bad diarrhea. Have had diarrhea off and on since. Now have achilles tendonitis and sciatica? Not sure if related.
Susan, very interesting. I worked with a woman who "lived off Cipro" and never had ill effects. There is something very different between 1)the people with no ill effects (you and my coworker), 2) the people severely and probably permanently affected (me), and 3) the people negatively affected, but who recover over time.
Susan and Suzy, would you mind if I PM you and ask you some questions surrounding your Cipro experience? Based on my experience and others like me, I have some hunches about what may or may not be contributing to our differences. I would love to gather some more "data" to test my "hunches" out.
Or, anyone else that wouldn't mind contacting me about their experience . . . I have some specific questions in mind, and am trying to see if there are patterns.
Oops, I guess I should ask . . . how do I PM someone anyway?
Oh sure! I also want to ask you about your tendinitis. I think to PM you click on the link at the top left of the page that says how many messages you have, then that takes you to your inbox.
You can also send a PM (personal message) by clicking on the name of the member you want to contact, as it appears to the left a post or in the members list, which will open their profile. At the bottom of the profile you have the option of sending a message.
Thanks Linda, I did try and send a message to Suzy, hopefully she got it!
I know it's not in the same group of antibiotics, but taking Augmentin for a week caused the whole AI thing to start. I will never ever forgive my last dentist for messing up my life this way for nothing.
If you look up Cipro on one of the drug websites it does say about the tendonitis.
My middle son took Levoquine about 1 1/2 years ago and developed the tendonitis in both arms wrists, elbows and arms above elbow. He has his own business that is seasonal and winters are slower so he had months to heal.
We were so worried as we thought he might not be able to work again. They finally put him on a course of Prednisone and then things slowly got better. Thankfully, he is able to work. I think that the Levoquin affects tendons more than the cipro. AT least that is what I have heard. Irish
Just wanted to update that this has been in the news more lately, so please be aware:
http://abclocal.go.com/wtvd/story?section=new%2Fabc11_investigates&id=8414971 Raleigh NC local news story
http://www.youtube.com/watch?v=Scyd59nUG7s A Canadian news channel recently did a story.
http://www.thedenverchannel.com/call7investigators/31073883/detail.html Denver local news recently did a story; for some reason, the link isn't working right now, hopefully it will come back up, as it was a good story.
http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects New York Times recent story (9/10/12)
http://www.huffingtonpost.com/2012/09/13/fluoroquinolones-antibiotics-side-effects_n_1881323.html?utm_hp_ref=fb&src=sp&comm_ref=false#sb=3500812,b=facebook Huffington Post 9/13/12
http://www.youtube.com/watch?v=tWns15Y5TdI ?Certain Adverse Events?: 30 min or so documentary about these drugs; several more victims stories within the various parts; this is part one of six.
http://www.levaquinadversesideeffect.com/wp-content/uploads/Documents/Hall-2011.pdf
Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population. American Academy of Physical Medicine and Rehabilitation, Vol. 3, 132-142, February 2011 (Mayo Clinic paper). There are hundreds of research papers confirming the widespread damage this class of antibiotic can cause (search PubMed abstracts). Although this one downplays the number, duration, and severity of these adverse effects the way they all do, this is the first paper I'm aware of that clearly states an "at risk" population who should not take this drug on Table 3, Page 136. Usually this information is buried in obscure research papers no one, including your doctor, will ever read. Note the at risk population includes people and related family members with autoimmune or endocrine disorders (diabetes, thyroid, etc.), steroid usage (ie, Prednisone), and "participation in a sport"(almost everyone else at some point in time in life).
I understand antibiotics are important, useful, and lifesaving drugs. I understand all drugs have potential side effects. However, the tendonitis and connective tissue disorders specific to this particular class of drugs is unique (the drugs appear to be directly cytotoxic to tendons, ligaments, and cartilage; see research), and for some, is devastatingly permanent. Please be aware of the risks and make an informed choice.
Hi Bella! Did you recuperate from floxing? I'm completely disabled.
This class of antibiotics is also known to have significant neurological side effects too. Small Fibre Neuropathy is one of those - I've spoken with many people who have daily full-body burning pain as a result of these antibiotics.
The reason they use the Levoquin is because there is so much bacterial resistance to the old medications. The Zpak hardly does a thing anymore for most infections. Zpak is in the family of erythromycins and they are not working that well either. Most people don't realize that the antibiotics that work are not as good as it used to be. Doctors live in fear because if they start out with a weaker antibiotic and a person doesn't respond then they have to use the Levoquin and maybe it will be too late to knock out the infection......So, they will choose to use the levoquin first. If the person gets the side effects it is not good but the patient has beaten the infection. Hard choices to make. Irish
I know. It's a rock-and-a-hard-place situation - but at least being aware of the issues means you have the opportunity to make an informed decision as to whether it is a risk you're willing to take, or whether you already have issues that mean you're likely to be more sensitive to certain side effects.
I'd try *very* hard to avoid them knowing about the neurological issues - I already have significant neurological damage due to Sjogren's and I really don't want to risk a side effect that can make that significantly worse when I know that I'm already "sensitive" to nerve issues. Someone else who has a lot of problems with connective tissue (especially someone with EDS or similar) would likely make a similar choice because they cannot afford the (increased to them) risk of tendon rupture.
I had a lot of MRSA years ago and still run positive cultures but don't seem to get infections now. Knock on wood. I became allergic to all those antibiotics over the years and would do Cipro, which I am thinking I may be able to tolerate, but the Levoquin is the one that would knock the MRSA out. I started having central nervous symptoms such as dizziness and imbalance worse than from my Sjogrens and then I would get like my brain was irritated and I needed peace and quiet. My immunologist told me no more of that.
I have taken Doxycycline for years as that is the only antibiotic that is pretty much left for me and MRSA isn't touched by that anymore. Soooo, I sit and wait and just have faith that all will be well. If I get a bad infection then I will be getting IV antibiotics and my6 immunologist is not happy about that because of my propensity towards allergic reactions. Life with autoimmune disease!!!!!! Irish