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Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #2 on Jul 8, 2008, 3:40pm »
Hi Thank you for the info I called the reported Mr. Robert Bazell at MSNBC who is the chief science reporter for NBC. I left him a message to follow up with some of the victums. We can all call him, maybe he eventually will do it. The number to call is 212-664-4444 just ask for Mr. Bazell, they will put you to his desk phone. Bridget
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Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #3 on Jul 8, 2008, 9:21pm »
On ABC TV News today was FDA blackbox warning on fq's -tendons only. Let's all write, call, email - newspapers, your legislators, FDA, radio, TV, doctors, others to say, "Glad some small progress has been made, but too little, too late. No help from the companies who profit from creating permanent illness, no big time research to treat victims. $$$'s needed".
Then tell them all the whole story - range of damage other than tendons, case histories, huge numbers of those affected, numbers of support group websites because there is so little help from doctors who beleve what the drug companies tell them - drug is safely out of the system in days, etc.
ANYONE WHO CAN HELP ME IN ANY WAY WITH FINDING FUNDING FOR RESEARCH FOR TREATMENT, PLEASE EMAIL ME AT cjbill8@aol.com. WOULD LOVE SOME HELP. MJ
Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #4 on Jul 9, 2008, 5:53am »
So what? Tendon ruptures are nasty and with all my respect to all those who got them, I don't view them neither as the most serious side-effect nor the most usual for floxies. What it should be written in a black box is that you can get a reaction involving 30 or 40 of the ADRs bellow which could last for months or years or forever. Sorry but I don't see this as significant since tendon ruptures are the only fq ADR generally accepted by doctors anyway (albeit they generally don't accept that it could come months after stop taking the fq, would that change?). Our bigger problems lie elsewhere. It is a step forward though, albeit insignificant. What we should focus on is not black box warning but getting our condition recognized and having the fqs prescribed as last-resort antibiotics only as it was originally intended
Ericipro Floxpert The Original Floxinator member is offline
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Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #5 on Jul 9, 2008, 8:31am »
It came a little late for me , but it came non the less . Now we have a leg (broken) to stand on . Now the masses will hear what we"ve known all along . QUINS CRIPPLE !! - Eric
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Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #6 on Jul 9, 2008, 8:47am »
YES to all replies here! it's a happy day, but very sad too. A sports tendon rupture is TOTALLY different than the damage done to us. Those heal... our damage is often permanent, tendon cells killed, nerve cells killed... we do NOT grow back inside our legs and other affected areas as other regular injuries due from a 'gravitational' force. Our damage, as they said, is unknown, and internal, like swallowing little time bombs that explode inside and take an unknown toll on millions of our little cells and there is NOTHING that can cure many of us. I was SO disappointed that the report was so superficial. lots of work needs to be done, and I have to forge ahead with writing a share holder proxy for the shareholders of J&J (ortho mcneal ) to vote on. other people should do same for bayer, merck, pfizer, etc. The happiest day of my life is when the shareholders applauded after I spoke at the shareholder meeting. Sounded like they got it. And now I hope they will VOTE on it and FORCE some of these issues on the poison pill pushers. (New name for drug industry? The PPP's?) LOL hands hurt real bad now from typing. later. paul
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Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #7 on Jul 9, 2008, 4:43pm »
While this is better than nothing, it is not even close to good enough in terms of justice for the floxed. My local news gave this a 15 second spot, and to me, it seemed very played down. They stated that the ruptures were compared to that of sports injuries, and that if it happens, stop taking the antibiotic, and you'll be OK after that. BULLSHIT. If you have a tendon rupture or severe tendinitis, it is already too late. It will not just go away, or even heal easily, if at all. I hate that this is downplayed so much; it is insulting to me! It took Public Citizen 3 years to even get the FDA to this point...and they are STILL LYING about the number of ADRs!! No mention of CNS symptoms, which in my opinion are much more severe. No mention of the effects being long lasting or even permanent. Ugh. The good news is that a spotlight has been again put on this class of antibiotic, so now would be a good time to write the major news networks (CNN, MSNBC, FOX, etc) and testify that their coverage is the merely the tip of the iceburg, and the creators of these drugs are doing NOTHING to create any sort of healing/recovery protocol for us who have been virtually destroyed by these drugs. Creating a buzz while the story is still active is the smartest move on our part to get our stories heard. The amount of med-watch reports filed, patients complaining to their PCPs, specialist tests, etc, mean nothing to these companies; profit is everything, as evident by their lack of action pertaining to this. These drug companies are not going to do ANYTHING to recognize or help us unless lots of public pressure and attention are given to this, and their hand is forced!!!
Levarel Administrator Your Crumbled Servant member is offline
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Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #8 on Jul 9, 2008, 8:06pm »
Hoorah. And yes to all of the comments above. It's not a big deal, and yet, it is. It is an opening and it's up to us to take advantage of that.
What we need to do is gather the names of every journalist we can find who wrote an article on the black box warnings. If anyone feels up to this (sorry, but I just don't right now ), please either post them in here or PM them to me. I'll then find their contact information and post all of that in an announcement on the boards, exhorting everyone to write to them. We have to keep momentum going while the word Cipro is associated in peoples' minds with the idea of Danger. We can't let this opportunity pass us by.
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Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #10 on Jul 9, 2008, 10:21pm »
Arel, That's a very good idea. We need to keep the information flowing on this topic before it is forgotten in a few months. Some guy named Joe had a post on the Yahoo board a while ago about all the editors of all the major newspapers and magazines and their email address. Hopefully I can find it. I think his name was Joe but I am not sure. It was a pretty good list of media outlets to contact.
Re: Black Box Warning on Fluoroquinonlones!!!! « Reply #12 on Jul 11, 2008, 12:23pm »
Guys sorry to be the bad voice here but they just moved one ADR already mentioned to the black box. OK more people will see it so what? will it change anything? No. I personally saw the tendon rupture warning before I ingested the quin that Saturday and I still though nah this is not gonna happen to me. And guess what? I still got floxed.this is nothing
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), please either post them in here or PM them to me. I'll then find their contact information and post all of that in an announcement on the boards, exhorting everyone to write to them. We have to keep momentum going while the word Cipro is associated in peoples' minds with the idea of Danger. We can't let this opportunity pass us by.
