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[This may be a controversial post but I am ultimately trying to raise awareness on this board to help others consider whether joint, muscle and tendon pain and / or new or worsening of existing arthritis symptoms, and /or nerve pain and/ or CNS symptoms like brain fog, chronic fatigue etc may be related to exposure to Cipro, Levaquin, Avelox or other Flouroquinolones (FQs).

Not everyone gets these side effects but I suggest that many of us here on this board have been 'floxed' and don't know it. Because of our histories, these problems are perhaps more likely to be attributed to IBD or other aetiologies. It is widely published that the side effects of these antibiotics are 'rare' but it may be more likely that they are just 'rarely recognised'. Often patients don't realise the cause of their new muscle, joint, nerve pain, or tendon problems which begin to emerge sometimes after exposure to a FQ. For those who do, doctors often don't believe the link.]

This post is so true! All the above applies to my husband when on Cipro.  Whenever he takes Cipro all tha above occur and the doc's assure him it is related to his history and surgeries- not from taking Cipro. The bad news is that Cipro is the only antibiotic that helps him. He  has to cycle antibiotics. I am a nurse and had two patients with tendon ruptures related to Flouroquinolones.

I research different things to do and try to help my husband-  nothing helps. My husband and most of you endure a hourly living hell- I am at my wits end. This disease has metastasized into our daily lives, I hate it! 

 

[This may be a controversial post but I am ultimately trying to raise awareness on this board to help others consider whether joint, muscle and tendon pain and / or new or worsening of existing arthritis symptoms, and /or nerve pain and/ or CNS symptoms like brain fog, chronic fatigue etc may be related to exposure to Cipro, Levaquin, Avelox or other Flouroquinolones (FQs).

Not everyone gets these side effects but I suggest that many of us here on this board have been 'floxed' and don't know it. Because of our histories, these problems are perhaps more likely to be attributed to IBD or other aetiologies. It is widely published that the side effects of these antibiotics are 'rare' but it may be more likely that they are just 'rarely recognised'. Often patients don't realise the cause of their new muscle, joint, nerve pain, or tendon problems which begin to emerge sometimes after exposure to a FQ. For those who do, doctors often don't believe the link.]

This post is so true! All the above applies to my husband when on Cipro.  Whenever he takes Cipro all tha above occur and the doc's assure him it is related to his history and surgeries- not from taking Cipro. The bad news is that Cipro is the only antibiotic that helps him. He  has to cycle antibiotics. I am a nurse and had two patients with tendon ruptures related to Flouroquinolones.

I research different things to do and try to help my husband-  nothing helps. My husband and most of you endure a hourly living hell- I am at my wits end. This disease has metastasized into our daily lives, I hate it! 

 

Claire,

I had very little to do with antibiotics for most of my life...other than when a teen and repeatedly  hospitalized for 'gastro' (at what point were they going to finally admit that it was UC?...never) and pre and post op for most of my surgeries. Plus the usual kid sized infections etc. My pouch had pouchitis the first few years and I did the flagyl/cipro dance but finally got off of it with diet.

It took til '99-2000 for me to be stuck on every increasing doses of antibiotics culminating in cipro 24/7 for close to 10 months...entre 1st bouts of sacroilitis and tendonitis...

Each surgery and complication brought on its on run of cipro or amoxicillin... now I have chronic sacroilitis and tendonitis on the right side.

I do not know for sure (no definitive diagnosis) that they are or were related. I can guess that there is a link but there are no tests.

My medical situation is so complex as it is that no one would give me just one cause for it.

All that I can do is avoid taking it if at all possible...I am sure that nothing that we take is without complication...all drugs have some sort of nefast side effect one way or the other (on some, not all of us) and we need to pick our poison...when on cipro in '99-2000 I really had no choice (gram positive golden staff infection that just wouldn't quit plus necrosis)...it was that or die so I guess the choice was clear.

What can be done? Many of us are 'hooked on' antibiotics for chronic pouchitis or other itis's because of our original condition or complications...not much choice...is there any antibiotic out there that is safer and yet just as effective?

thanks for posting, it shows that you care 

Sharon

 

Claire,

I have fixed the broken FDA link in your post. Plus, I deleted the duplicate topic that had no replies and combined the topic headings. It is redundant and confusing to have the same information provided in multiple topics. While I understand your desire to get this information out there, it is best to have it in one place so all replies are together.

Jan

Thanks Claire, no unfortunately Cipro is the only antibiotic that really helps. He is on Omnicef 300 MG  twice a day without relief.  Cipro causes tendon and muscle pain, fatigue, etc...he takes it when he feels worse. Let me preface this by saying his good days would be a nightmare to someone without a j pouch , much like all of you.

He takes numerous supplements,  tumeric, cinnamon, magnesium,  probiotics,  multivitamin, etc..

I'm thinking about giving him a drug holiday, stopping most of supplements,  except probiotics, multivitamin and antibiotic. Please give me your input.

Called GI, ordered Entocort 9mg for 4 weeks, has an appointment.  He feels "his good" on them. Rectal pain less can walk without feeling like his bottom was on fire and less pain. And he can empty

Sorry for length of this post, we just feel helpless. He somtimes misses his diseased colon. Sad, very sad

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