I was harmed by the antibiotic Levaquin and somehow came across the CLL page. I was curious what CLL is so I looked to see but unfortunately there is nothing to tell me what CLL stands for. The home page doesn't explain it. The About page doesn't explain it. Not everyone who arrives here knows what your abbreviations mean and your page would be a heck of a lot more helpful to everyone who doesn't already know if you bothered to explain it somewhere. Best wishes to all of you with whatever this condition is.
By the way, avoid fluoroquinolone antibiotics like Cipro, the damage they cause makes most diseases pale in comparison with head to toe devastation.
Written by
mgirard
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Yes you have a point mgirard about CLL not being explained. It stands for Chronic Lymphocytic Leukaemia which is a treatable but as yet incurable blood cancer. Most people searching for CLL are directly affected in some way so know what it stands for.
The dangers of Quins are well documented on this site because we have CLL’ers who have been affected. One of our members is very prominent in the Quins movement to make the dangers known and support those impacted.
Still making the rounds in the states but not as much. I just finished a 7 day course.
It was that or hospital. It got me well without any side effects. I guess it’s like luck of the draw. Not everyone has issues with it like any other drug but when they do, it can be devastating.
Glad it helped you. Many people do benefit from it but the problem is, no one can predict in advance who will react badly to it (however there are some recognised high risk groups such as having R/A).
I can't tolerate many antibiotics but Cipro is one that for me is well tolerated and I haven't had any problems with it. Also have taken it many times over the years. However, due to the warnings I will ask what other drugs can be as effective for me without undue side effects.
Thank you kindly for the info. I am a leader in the Quin community so I have some idea of the effort you put forth despite serious health issues. You have my utmost respect. I hope they make great strides in treating and curing CLL.
I’ve taken a strong interest in the campaigning work done by yourself and others and feel great inroads are finally being made though it’s a tough battle to get the message across and support those affected.
migirard, if you haven't read it, here is a site to read about the warning that has been given by the FDA--unfortunatly it doesn't seem to have gotten to the all physicians.
Thanks, yes, I was the closing speaker at the combined FDA and CDC antimicrobial meeting on Nov 5, 2015 that resulted in the changes to the conditions FQs are approved for and the new black box warning but I had not seen this link, so thanks. It's sad how hard it is to get doctors to take these warnings seriously. There are literally millions of people who have been "floxed" who were then misdiagnosed with fibro, lupus, ALS, Parkinson's, MS and hundreds of other wrong conditions. This is a double whammy, as we end up being prescribed more drugs that don't help us and in the process we skew the results of research into treatments for all these conditions, so a lot of people get hurt. This is a massive catastrophe of almost unimaginable scope and scale that will soon be a major news story as our numbers are exploding. I hope that none of you will be joining us, but sadly, it is people who already have health challenges that make up the majority. Sometimes people need to take FQs, in which case I highly recommend taking magnesium and probiotics. It takes a lot of mag to process the drugs and our bodies will pull it from our connective tissue if need be to get the stuff out of our systems. Since the Achilles tendon is the biggest storehouse of mag in our bodies the telltale sign of fluoroquinolone toxicity is a ruptured Achilles tendon. In my case it was the two next to my Achilles that ruptured completely, spontaneously, while watching TV in one case. I also had blood clots, broken blood vessels, bloated failing veins carved from 13 entry points so far, more coming. I had a cartiage transplant from a dead child, collapsed lung, torn lumbar muscle, a hernia, 6 bulging discs when I was an extreme snowboarder months prior, and hundreds of other serious debilitating health issues. It's almost impossible to exaggerate how awful being floxed really is. I hope that those who read this will look into it and will avoid these drugs if at all possible and to make sure they take them properly if they need them. My doctor massivley over-dosed me and my medical team just kept adding more drugs as new symptoms appeared, most of which were contraindicated, meaning they cause a toxic reaction when taken together. People can not take any NSAIDs or steroids at the same time, or any fluoridated drugs, which is over half of them, and even supplements that are also metabolized via the CYP-450 metabolic pathway can overload our ability to process things and lead to overdosing.
I wish you all success as you try to cope with your various health issues!
In a general response to this subject. I have had an upper respiratory infection for the past couple of weeks. At the onset my GP gave me a round of Bactrim, as I am allergic to penicillin and refuse to take Quins. Ended up in the ER with 102.8 fever and dehydrated. ER doc said she could not find cause of fever, ruled out both flu bugs, urine was clean, etc.....but told me to stay on the Bactrim just in case. CLL specialist got involved, sent me a prescription for something “stronger”. Turned out to be a Quin. I was speechless! This is a very well respected CLL specialist trained under Dr Wierda at MD Anderson. I have to believe that these guys can be so zero’ed in on their specialty that they don’t have time to learn about all the drug interactions, etc. not a good thing, but I guess understandable. Just goes to show we have to be our own best advocate.
The black box warning is so lengthy that the print is reduced in size to get it all on the drug sheet. I had to get a magnifying glass out to read it all. One of the warnings said it should not be used for upper respiratory infections, but saved for more serious issues.
I spoke with my pharmacist and he poo pooed the warnings, said he had never had anyone come to him with a problem as long as he had been a pharmacist. I have had my record changed at the pharmacy to show I cannot take this drug. I had already put it in my health alert info on my phone.
Obviously I did not take the drug. Will be seeing my specialist next Thursday, and will have a little chat with him about this. Taking the drug sheet with black box warning for his reading pleasure! Seeing my GP today, as the ER followup. Still having some symptoms but fever is gone.
I know the doctors hate it when their patients read too much Dr Google, but in this case we have to look out for ourselves!
I have it written into my GP medical care plan that I’m never to be given Fluoroquinolones but I still check especially in hospital. Because some medics remain unconvinced, uninformed or downright complacent of the possible risks, I simply tell them I’m allergic to them. I’ve found giving a clinical reason is the only way to prevent the risk of being prescribed them. The message is getting out there however because when I mentioned to one Consultant that I wouldn’t have quins, she smiled and said, ‘keen on keeping your tendons are you!’
Thank goodness for the people who are campaigning on our behalf and tragically because they had to be the unfortunate guinea pigs. Your story hits home Mark.
This is a discussion sparkler will be very interested in.
What percentage of people have issues? I know many people who have used this drug when needed without any issues including myself but I do hold my breath when I have taken it and thank god that it worked without any side effects.
Please remember that the combination ot Cipro and Imbruvica (ibrutinib) requires a dose reduction in Imbruvica (ibrutinib) to 140mg a day...
I suggest all floroquinilones, should have this as well...
Very early after approval Cipro and Imbruvica (ibrutinib) caused me lifelong damage to my urethera... please don't assume you doctor knows this and GPs are VERY unlikely to be aware.
I can verify that a friend, an MD, ended up with a ruptured tendon. I also have the drugs on my list of allergies, but have twice had to tell people (an NP once, and a doctor the second time) who were going to prescribe Levequin and Cipro that I would not take either. I have been lucky in the past, but find it concerning both that they were ready to hand these drugs out when others would work just as well, and that they did not check my list of drug allergies.
My pharmacist, who is fantastic, is the one who takes this stuff seriously, and is not afraid to challenge a doctor. He spent about 20 minutes on his computer blowing up the black box warning a few times until he had a copy for me that is very readable.
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