I'm being very careful when I say this, and I am NOT suggesting anything (well not yet anyway) There is a lot of "hysteria" over levequin toxicity and a ton of "urban Legend" (not unlike Lymes and few other things) Tendon Rupture is fairly rare and pretty limited to a well defined group of folks 60 and over and almost exclusivley the achilles and then almost all with a long history of steroid use. The numbers are rather interesting in that its not clear whether this is significantly increased in at at risk population. Considering PsA patients are at significant risk anyway, its important to keep in top of it. But please keep it in perspective. Everyone of us will these problems and Achilles problems at some point. I would be surprised as we age that we all don't know several folk with achilles rupture that never took levaquins.
Then there is the issue of Steven-Johnson Syndrome that looks just an awful like Psoriasis when starts. I realize its easy to say don't worry, but I am going to say it anyway. And by way of justifying it keep in mind we men have no choice in the matter. We develop (most all of us at some point) a thing called Prostatitis which guess what is almost exclusivley treated by a 6 MONTH (or longer) course of Cipro. I have had it, and taken it (twice) The tendon problems do NOT suddenly appear months and months later. And if they do, you reattach the dang thing and move on. Please do not let this thing stop you from moving forward and taking care of your PsA. The levaquin thing MAY cause a problem. but if you cut back your activity because of concerns, I promise you, you WILL have a problem. Talk your risk through with your docs and move forward.
What YOU can do is start a "group" where you can share etc. Just its presence (if you post your stories) will be readily available to help educate others to prevent other from getting into this mess.
tntlamb.....I agree with you completely, that is what I was trying to say in my post a few days ago. Well said and hope it's better taken than my post was. I know you are extremely knowledgeable in PsA ( and life in general it seems !) and hope others will follow your wisdom and advice. If we question and analyze every symptom for too long, we will miss the life we are destined to have ! There are times, I feel, we need to cry, shrug our shoulders, curse, or do whatever we do to get our frustrations out and move ahead. Don't mean to hurt anyone's feelings, just my opinion.
tntlamb said:
I'm being very careful when I say this, and I am NOT suggesting anything (well not yet anyway) There is a lot of "hysteria" over levequin toxicity and a ton of "urban Legend" (not unlike Lymes and few other things) Tendon Rupture is fairly rare and pretty limited to a well defined group of folks 60 and over and almost exclusivley the achilles and then almost all with a long history of steroid use. The numbers are rather interesting in that its not clear whether this is significantly increased in at at risk population. Considering PsA patients are at significant risk anyway, its important to keep in top of it. But please keep it in perspective. Everyone of us will these problems and Achilles problems at some point. I would be surprised as we age that we all don't know several folk with achilles rupture that never took levaquins.
Then there is the issue of Steven-Johnson Syndrome that looks just an awful like Psoriasis when starts. I realize its easy to say don't worry, but I am going to say it anyway. And by way of justifying it keep in mind we men have no choice in the matter. We develop (most all of us at some point) a thing called Prostatitis which guess what is almost exclusivley treated by a 6 MONTH (or longer) course of Cipro. I have had it, and taken it (twice) The tendon problems do NOT suddenly appear months and months later. And if they do, you reattach the dang thing and move on. Please do not let this thing stop you from moving forward and taking care of your PsA. The levaquin thing MAY cause a problem. but if you cut back your activity because of concerns, I promise you, you WILL have a problem. Talk your risk through with your docs and move forward.
What YOU can do is start a "group" where you can share etc. Just its presence (if you post your stories) will be readily available to help educate others to prevent other from getting into this mess.
Hi, Lamb, I read your post about your shoulder today. I'm sorry you are in pain. I can relate to that because I can barely walk today. My problem is the result of a toxicity that you said is mostly "hysteria" and "urban legend." I'm being very careful when I say this, and I'm not suggesting anything--well, not yet, anyway. But I hope that as you post about your recovery, which I'm sure will be difficult and painful, that no one suggests that your pain is not real. I hope you don't encounter a flame in response to your posts that questions your credibility about your experience, or implies that you don't have the intelligence to seek appropriate medical care or to read and interpret literature about your medical problem. I hope that no would-be statistician uses anecdotal evidence to suggest something like, "I took that drug, and that didn't happen to me" to imply that your complaints have no merit. In short, if you ask for support while you face an awful challenge, I hope that responses to you are thoughtful, kind and helpful. I realize it's always easy to be trite and say, "Don't worry," but I'll say it anyway. And, I don't mean to hurt anyone's feelings. In fact, I wish you all the best.
Ouch Byrd Feeder. I am going to assume you are in pain today and that is why your response to Lamb has some bite to it. I am going to put on my moderator hat (and I do not play one on tv!) and try to interpret what I hear Lamb saying for you:
The urban legend and hysteria about levaquin is the FREQUENCY of ruptured tendons that are seen as a direct result of taking levaquin or cipro. It is esp. hard to determine in a population that is all ready at risk of developing ruptured tendons which PsA patients are. A certain number of us suffer ruptured tendons without taking either esp if we are over 60 and have taken al ot of steroids. I have had 3 ruptured tendons in my 50+ years with PsA and have never taken either. Lamb is also saying it can be repaired which is a good thing. What can't be repaired is if we stop our PT as a result of fearing rupturing tendons. The strength we lose by stopping our PT may not be reversible. So despite tendon pain we need to continue our gentle PT for me it is in warm water.
I do not read Lamb's post as in any way minimizing your pain nor your intelligence. Contrary I think he respected your pain and your intelligence enough to understand what he was saying.
I will keep you in my thoughts and prayers. I know what pain can do to us.
With all due respect Lamb, the thread is about Levaquin toxicity which you apparently haven't experienced. You question Byrd's condition by saying "the Levaquin thing MAY cause problems" which is like saying you MAY have experienced Prostatisis. I know you didn't mean to but your post contained a lack of understanding of the effects of Levaquin poisoning. It is like PsA on steroids and is debilitating at times because it affects not only the tendons but the brain, organs and glands. Fluoride poisoning is real, horribly painful at times and hard to reverse. You reported a theory and it did come across a little condescending to me as well and not very helpful. Maybe you could start a thread or group on Prostatisis since that is what affecting you personally and sounds very unpleasant to live with.
tntlamb said:
I'm being very careful when I say this, and I am NOT suggesting anything (well not yet anyway) There is a lot of "hysteria" over levequin toxicity and a ton of "urban Legend" (not unlike Lymes and few other things) Tendon Rupture is fairly rare and pretty limited to a well defined group of folks 60 and over and almost exclusivley the achilles and then almost all with a long history of steroid use. The numbers are rather interesting in that its not clear whether this is significantly increased in at at risk population. Considering PsA patients are at significant risk anyway, its important to keep in top of it. But please keep it in perspective. Everyone of us will these problems and Achilles problems at some point. I would be surprised as we age that we all don't know several folk with achilles rupture that never took levaquins.
Then there is the issue of Steven-Johnson Syndrome that looks just an awful like Psoriasis when starts. I realize its easy to say don't worry, but I am going to say it anyway. And by way of justifying it keep in mind we men have no choice in the matter. We develop (most all of us at some point) a thing called Prostatitis which guess what is almost exclusivley treated by a 6 MONTH (or longer) course of Cipro. I have had it, and taken it (twice) The tendon problems do NOT suddenly appear months and months later. And if they do, you reattach the dang thing and move on. Please do not let this thing stop you from moving forward and taking care of your PsA. The levaquin thing MAY cause a problem. but if you cut back your activity because of concerns, I promise you, you WILL have a problem. Talk your risk through with your docs and move forward.
What YOU can do is start a "group" where you can share etc. Just its presence (if you post your stories) will be readily available to help educate others to prevent other from getting into this mess.
Wow. Everyone, please stop and READ what the other person is posting before you respond. Please do not start a post with the phase, “With all due respect” because generally the words that follow are anything but.
Lambs response is due to this thread getting out of hand with panic. There are folks here who genuinely have had adverse responses to Levaquin. No one is questioning that. He is responding to the further fear going along with it. Being afraid to take PsA meds, use topical meds, not doing PT, etc. because of bad information, and the fact that the doc must not have taken the time to educate his patient. Though no one is questioning what any of you is currently experiencing or the severity of it, it seems that the main concern now is tendon rupture, yes? So the risk of that is rare and when/ if it happens it is treatable. Is it an easy situation? Probably not, but the take away is this: don’t risk your overall health being fearful of what could happen, especially when what could happen is treatable (the Achilles rupture-most common tendon problem with Levaquin toxicity). The other problem to address is this: if you are really sick and have been through a gob of antibiotics; Levaquin could save your life. I hope that everyone treats this (and every rx drug, for that matter) with a healthy respect. However, if you really need it, don’t be afraid to take it. Proceed with your eyes open and be aware.
I would hope that everyone knows Lamb well enough at this point to take his responses like this: if it applies to you and you find the information valuable, then great. Use it. If not, keep scrolling. He is gruff, to the point and uses facts and stats to speak. He get VERY concerned when people begin to panic and he will say something…usually with facts. It normally goes over, with those who are fearful, like a boulder…with a thud. However, if you read his entire post as a reply only to tendon rupture, there may be better understanding.
The flaming, and scolding will end now. I have my mod hat on and think its time to drop these sorts of comments. This is the last warning. The next will be me locking the thread. Please do not take this to other threads or groups, I read them all.
I'm having a little success now living with the Fluoride in my system. I never know when I'm going to have an episode but there is a little more time in between bouts and I'm not so much in crisis mode. My tendons are a little less inflamed so I can walk with a cane and not a walker. What my brain, nervous system, organs and glands go through during an episode is very disturbing. I've never experienced anything like it and after a few hours of flooding my body with extreme unpleasantness recedes and allows me go in search of information to help speed my recovery. There is little most doctors can do and I'm trying to stay focused on finding techniques and products I can use to eliminate this poison and it's effects.
This FTS has been a life changer for me. I've had many years to learn to accommodate my PsA and keep my job but this affliction is holding me hostage and I can't keep up. I've worked for 20 years with seven men who are geologists and engineers and need more than I can give them now. I'm supposed to talk with my boss today about stepping back, hiring a part-time permanent assistant, and presenting a workable solution to keep the company afloat. I don't expect them to understand my dilemma, how could they, but I'm hopeful there can be a positive professional realignment without sinking both our ships. It might be a little easier if I had two heads or no legs. :-)
The main concern in Levaquin poisoning isn't just tendon rupture, although it is a threat. Since we're talking about facts, the nervous system is also affected adversely, which is also a real threat and terribly unpleasant and a large part of FTS.
If someone's response as a moderator is gruff in general then it might come across as insensitive because they haven't experienced the problem and may generate a like-response. If he is just trying trying to quell panic it's not coming across very well. I agree we need to keep the flames down, but if the flames are being fanned by a lack of information about the subject, especially by a moderator, then it's not really helping is it? Done, done and done.
GrumpyCat said:
Wow. Everyone, please stop and READ what the other person is posting before you respond. Please do not start a post with the phase, "With all due respect" because generally the words that follow are anything but.
Lambs response is due to this thread getting out of hand with panic. There are folks here who genuinely have had adverse responses to Levaquin. No one is questioning that. He is responding to the further fear going along with it. Being afraid to take PsA meds, use topical meds, not doing PT, etc. because of bad information, and the fact that the doc must not have taken the time to educate his patient. Though no one is questioning what any of you is currently experiencing or the severity of it, it seems that the main concern now is tendon rupture, yes? So the risk of that is rare and when/ if it happens it is treatable. Is it an easy situation? Probably not, but the take away is this: don't risk your overall health being fearful of what *could* happen, especially when what could happen is treatable (the Achilles rupture-most common tendon problem with Levaquin toxicity). The other problem to address is this: if you are really sick and have been through a gob of antibiotics; Levaquin could save your life. I hope that everyone treats this (and every rx drug, for that matter) with a healthy respect. However, if you really need it, don't be afraid to take it. Proceed with your eyes open and be aware.
I would hope that everyone knows Lamb well enough at this point to take his responses like this: if it applies to you and you find the information valuable, then great. Use it. If not, keep scrolling. He is gruff, to the point and uses facts and stats to speak. He get VERY concerned when people begin to panic and he will say something....usually with facts. It normally goes over, with those who are fearful, like a boulder....with a thud. However, if you read his entire post as a reply only to tendon rupture, there may be better understanding.
The flaming, and scolding will end now. I have my mod hat on and think its time to drop these sorts of comments. This is the last warning. The next will be me locking the thread. Please do not take this to other threads or groups, I read them all.
The OP’s intention, I think was to warn the community about the dangers of Levaquin. I appreciated that. The warning is particularly relevant to those of us with PsA, because the symptoms of toxicity are so similar to the symptoms of our disease. It was a very worthwhile warning.
I can see how Lamb’s informative response could rankle, really I do. At the same time, it’s good to keep everything in perspective. (And speaking of perspective, the Perspective post is worth pondering, I think.)
But I think we’re at the point now where people who are already hurting, frightened and in pain are going to get hurt worse. So I’m now going to lock this thread. As 4Real said so well, Done, done and done.
The OP’s intention, I think was to warn the community about the dangers of Levaquin. I appreciated that. The warning is particularly relevant to those of us with PsA, because the symptoms of toxicity are so similar to the symptoms of our disease. It was a very worthwhile warning.
I can see how Lamb’s informative response could rankle, really I do. At the same time, it’s good to keep everything in perspective. (And speaking of perspective, the Perspective post is worth pondering, I think.)
But I think we’re at the point now where people who are already hurting, frightened and in pain are going to get hurt worse. So I’m now going to lock this thread. As 4Real said so well, Done, done and done.