Bringing information & encouragement to fight RA
rawarrior up at the crack of dawn too, I see? Hope you got some sleep! #rheumsomnia
I have had the same experience. After Cipro 2 1/2 yrs ago my life has not been the same. 6 mos later I was diagnosed sero-neg RA. This is so amazing to me. After 6 drs later no Dr. has agreed that there’s a connection.
I took a 10 day course of levaquin and have never been the same since. It is while I was on it that I first abruptly started experiencing RA symptoms. But every single doctor I have seen in the 4 1/2 years since then tells me there is zero connection between the drug and my RA. Levaquin is perfectly safe, according to them (even though many are unaware of the black box warnings until I mention them). I am “misremembering” how my first symptoms arose, they say. Maybe it’s just coincidence, others have said. Then there are those who, while they don’t directly tell me, hint that I am a huge liar, with that hint of a smile on their face while they pat me on the back and shove me out of their office, conveniently suggesting I move on elsewhere for medical care because they “don’t know why you are so sick, but your symptoms are beyond my expertise.”
I think the problem with fluoroquinolone toxicity issue is that these drugs are so widely prescribed, you will never get a physician to admit that they might just possibly be dangerous. Which is a shame. I’m not looking to sue anyone. I’m just trying to get the help I need to regain whatever of my health is still salvageable.
I’ve had this happen both times I took Levaquin for unresponsive bouts of pneumonia. Both times it happened, it was a couple of months later so I didn’t relate the two things.
The first time it happened was in 2008. I had not been diagnosed with RA. It was nearly a year later that I just happened to come across an article about it when I made the connection.
Even this most recent time, which was earlier this year, I didn’t make the connection immediately because of the delay. Fortunately, it wasn’t an extremely bad tear either time, but it was sudden, with no relation to activity.
I am an NNP and these are well known risks of taking Levaquin especially, to anyone over 60. Levaquin does not give me tendonitis, but it produces muscle weakness to the point of feeling it is an effort to breathe. This is also a side effect I experienced many years ago with Macrodantin. Currently the only antibiotics I can safely take are Azithromax and Clindamycin. Always research any drug you are given and ask questions. And if you are not comfortable with the risk then ask for an alternate medication.
I am allergic to many antibiotics but Cipro is one I can take.I have had a lot of tendonitis with my RA but have been able to take Cipro while on Prednisone and Humira or Orencia without a problem, but was warned by my family physician and pharmacist about this possible side effect. I will definitely be cautious in the future, but it appears not everyone has this side effect and with multiple allergies sometimes there may not be another alternative, but everyone should be aware of this problem.
I agree Brenda. Some can take it safely, but everyone should be aware. They don’t have a test to see if it’s safe for a particular patient & some have permanent damage after taking it. All of these decisions can be complicated, like you said, by various allergies etc, so it’s all about informed choice.
In 2004 (two years before I started with Rheumatoid Arthritis) I had a simple eye infection in my left eye that had lasted several days. The gp I saw (who was filling in for my regular doctor) prescribed Ciprofloxacin eye drops..a very potent, very expensive drug (definitely over prescribed, as all I needed was a simple eye drop). Anyhow, I was told to use 2 drops in the infected eye every 2 hours for 2 days, then every 4 hours for the next 5 days. At the end of the first day, my neck was stiff on the left side. I thought nothing of it. By the end of the second day, there was stiffness radiating from my neck down to my left shoulder. I figured I must have strained it somehow. By the middle of the third day, the stiffness was on the left side of my neck, my left shoulder, and radiating down over the scapula. At that point I finally put 2 and 2 together, and went online to do some research on this drug. I found some reports of tendon inflammation issues with Cipro, and that answered my question immediately. I stopped taking it (it was not doing a thing to cure the eye infection anyhow)and reported the adverse reaction to the FDA (they have an online site where you can post adverse reactions to drugs). That was the ONLY drug I was taking at the time, so there was no issue with other drugs causing this reaction. I have told everyone to STAY AWAY FROM CIPRO. Doctors are prescribing it the way they used to prescribe Penicillin back in the day. One friend took Cipro as a preventative when she went to China on vacation! I have made sure that CIPRO is on my SEVERE ALLERGIES list with all my doctors!
One quick other note regarding having RA and antibiotics. A year ago I had a large kidney stone removed, and the urologist prescribed Bactrim DS 800-160 after the surgery to prevent infection. I had used Bactrim a decade or so earlier for an infection with no problems. I currently take Minocin to keep my RA in remission, but only take 3 100mg tablets per week. In order to avoid any problems with 2 drugs at a time, I had stopped taking the Minocin several days before the surgery, so had not taken any in 6 days when I was given the Bactrim prescription. I was told to take one tablet every 12 hours. That nite, after having taken 2 tablets that day, I was experiencing a severe headache. It lasted thru the nite, and after the morning dose, got even worse. I had to go lie down mid-day. I did not take another pill that nite, and my head felt like there were electrical sparks going crazy in my brain. That lasted all night long, and I got really sick, nauseous, feeling rotten. I took no more Bactrim, waited for two days for the sickness to lessen, then went back to my Minocin. However, all my joints had by then started to swell up and become painful. EVENTUALLY I was able to get back to a status of remission, but it was a LONG HAUL. My Rheumatologist told me that people with RA should NEVER TAKE DRUGS with SULFA. And that one has lots of Sulfa in it! So just a warning…stay away from Antibiotics with Sulfa drugs!
I just read about the connection between RA & Cipro. I finally feel like my connection with taking Cipro, does make since. I took Cipro 2 1/2 yrs ago. After a week on the meds for a UTI. I had the worse pains, started in a few,& quickly moved all through both hands, feet, & ankles. 3 months later I was told I had carpal tunnel,followed by surgery. (which didnt explain why I had feet pain). Had complications after surgery, tendons where affected & I had 6 months of PT.so I could bend my hand.I was seen by 6 drs.in 6 mos. Then I was told by my Rhuemy you have RA. I tested negative.This is amazing to me a asked several Drs. if the Cipro had anything to do with this 1st Flare. They all have said there is no connection.
Wow, thanks SO MUCH for posting about this. Last time I had a sinus infection, I was too sick to make the trek to my regular provider, and went to the office a mile away. She wanted to give me Cipro. I took it once about 10 years ago and got really sick. Based on that, I said I wanted Zithromax instead, but more than the Z-pak (I usually need a few days more). I took that and got better as usual. Now reading this post and I doubly glad I didn’t take the Cipro. I had no idea about this problem!! If I have seen my regular provider she probably would have known (she seems to know everything about my complex health issues), but this random dr, even with my records, made no mention of it.
Thanks for bringing this up. Doctors need to be disclosing full information to their patients – its not acceptable or fair to withhold information because a patient ‘might’ imagine or exaggerate side effects. The FDA needs to get full information out there!
WOW…This issue is current and painfully relevant for me. Which is worse, the disease or the medications? I took Levaquin recently for a respiratory infection, to prevent the virus from turning into pneumonia with my weakened immune system. Here we go again…RA meds on hold. Two weeks later I had searing pain in my left shoulder that felt nothing like RA pain. “Oh, you are just flaring, let’s switch to Enbrel instead of Humira.” said Rheum doc. I could not, and still cannot lift my left arm. “No…you do not need pain pills,” said Rheum doc. Ortho surgeon declares that I have a torn rotator cuff AND now add a cellulitis infection to the mix several days after first Enbrel injection. Two months later, still no methotrexate, prednisone, or biologic due to infection. I cannot function in my job as a teacher or as a human being in general. I have to work to support my disease. I HATE RA!
I hate it too Lisa. I hope your shoulder heals soon – will you need surgery?
Absolutely…. after birth of twins, back pain, epidural shots- the following winter on hardwood floors my first
symptoms were excruciating achilles tendon pains, unable to
walk felt crazy- then my hand felt broken, went to er for xrays- it was RA
but no one knew it til I went to dr with swelling and achy
not sure if I had cipro then but do know for a fact that
this last month I had Cipro for UTI and now have the achilles pain that was gone for the last two years
for me I will tell my pharmacist i am allergic to cipro
I think the really important point is that our doctors need to learn to listen to their patients. When you are experiencing a bad effect from a medication the worst thing ever is to be told your symptoms are in your head. Lots of meds have lots of side effects common and uncommon. Withholding information because the doctor thinks you might imagine you have a side effect exposes the patient to unreasonable risk. Because doctor knows best? What? Like I don’t have a brain? I want a partnership not a dictatorship. There really is no such thing as a benevolent dictator.
Leslie, I agree of course. This is something that is well-known in the cancer community, although I’ve not seen it discussed much in rheumatology. We’ve focused so much trying to get rheumatology to acknowledge the actual symptoms of rheumatoid disease that patients experience – because patients are often suffering so much and want to be treated. However, side effects are an important issue for informed decisions too of course. Shared decision making is the buzz-word, and it’s not possible w/out the information.
Well said Leslie!
I have Ra and I have problems with kidney stone. When I started the RA meds that’s when I got the stones I still take the meds cuz they let me live without the drugs I would be nothing the side affects are ok at least I can live life
I developed an Achilles tendontis (along the back of my heel/ankle) after taking Avelox, which is in the same family as Cipro and levaquin, all quinolones. Quinolones are heavy duty antibiotics with more side effects and complications than some of the other antibiotics.I now say I am allergic to them.
As Kelly so well details, they are relatively contraindicated for people with RA, especially if you take steroids like prednisone. I actually just discussed this with my rheumatologist yesterday. She said they should be avoided, by people with RA….although sometimes there is no good alternative and you have to weigh risk-benefits.
I agree with your rheumatologist completely. We will never forget telling the rheumatologist that the pharmacists had said it was “contraindicated” and he said it’s not and there would be no reason for it.
I was put on Levaquin after several days on two other antibiotics failed to treat an infection with a high fever that put me in the hospital. My internist did inform me that there was the possible side effect of a tendon tear. Fortunately, I had no side effects from Levaquin and it was effective in treating what I was eventually diagnosed with atypical pneumonia. As with any drug, the risks and benefits have to be weighed and considered in the context of one’s situation.
Cipro is what started my RA battle. I have always had some issues, that may or may not have already been RA. If I already had RA, it was very minor. Within 24 hours of taking my first dose of Cipro, I had full blown severe RA. Since taking the ONE pill of Cipro, I have had 5 years of RA Flare. It’s been one thing after another and my life will never be the same. Before taking Cipro I had extensive energy, and just worked through pain when it happened. Now, energy is something I hope for, and pain is something I just accepted. I warn everyone I know not to take these meds because the risk is not worth it. There are plenty of other meds that work that do not cause these problems. If these meds were causing a disease that was well known and understood, they would not be allowed to continue. I hope that in the future these dangerous medications will be removed from our health care system.
OMG! I was out on Cipro a little over a year ago for some reason. After my second dose, I noticed my lower leg tendon felt like it was going to SNAP! So scary. I KNEW it was this antibiotic and quit taking it. Cipro is a strong antibiotic that may be great to treat certain things, but be careful! It can cause more damage than good!!!
I have had RA since 2009. I know I have taken Cipro and IV antibiotic for kidney infections. I don’t know if the Cipro caused my severe achilles tendinitis but I have had it for several years. It is painful to walk and I have gained 40 lbs since I got it. The only remissions I have had were from steroid packs. After taking the steroids I crash hard and get sick with various things like bronchitis, costcochondritis, pleurisy, or kidney infections, and even the flu twice this fall. I have also had several root canals and I feel like there is a connection with the steroids causing the dental problems.
I feel like I am getting off track here, but I’ll just say that this disease is so complicated it’s hard to tell what is causing what anymore.
Reading this aggrivates me as to why the heck is it that my Rheumy gives me cipro everytime I have a sinus infection!
Waynette, Why in the world did they give you Cipro for a sinus infection? It angers me that these doctors will prescribe whatever for no reason! They should have given you amoxicillin or something mild for a sinus infection!! I hope you are not experiencing bad side effects from it!!
I have been treating a chronic infection in sinus and chest. In the last three months I have taken cipro, Avalox, zpack, and levaquin as well as trying to tolerate doxycycline. All of these of course have interrupted my RA tx. I cannot walk from my car into the grocery store without my leg muscles getting so fatigued that they don’t want to work and working on my hair fatigues my arms, I have to take breaks. I have been weak and get dizzy and feel like I’m going to pass out when I stand up. I do have something undiagnosed going on in my chest but I couldn’t explain why I didn’t feel like I was going to live. I am on day 10 of levaquin now and have a rx for another week. Drs are trying to knock out what is wrong with my chest without knowing for sure what they are trying to knock out. I wonder how long it would take me to feel halfway normal if I take no more antibiotics? I do remember about the time I got RA 10 years ago, I took levaquin and did have a ruptured acheles tendon. I did not know at the time that is what caused it. It happened for no reason. I believe I will go off antibiotics until someone can tell me why I am taking them. I have had a cough and chest pain along with thick sputum for several weeks but if its not better by now, it’s probably not going to get better with antibiotics. Don’t you agree?
I am convinced that my RA was brought on by Levaquin, and possibly Avelox. Have a history of chronic sinus infections & the only drug that helped was Avelox. For some reason my ENT prescribed Levaquin instead of my normal Avelox during one of my sinus infections. Within a day I noticed very strange symptoms, mainly severe pain in both of my pinky fingers and a horrible burning pain in my Achilles’ tendons. I have a history of spraining my right ankle so I am used to pain in my foot. However this pain in the back of my foot was something I had never experienced until Levaquin.
Part of the reason I am convinced my RA was brought on by Levaquin is because of what happened during a meeting. A coworker was complaining about her pinky fingers hurting and it immediately caught my attention. I knew she was battling a sinus infection as well and I asked if the doctor had prescribed her any medications. She said yes Levaquin. We discussed other symptoms we were having and they were identical. Unfortunately for me I had already finished the Levaquin prescription, and I was still having issues with my body.
The next day I was having dinner with a friend and I was telling her the story about my Achilles tendon pain & my painful pinkies when her mouth dropped open and her face went pale. She suffers from autoimmune hepatitis which she swears was brought on by taking Levaquin. I knew she had taken that drug but I had not put one and one together and realized that I too was severely suffering from taking Levaquin. I could see the fear on her face that she was afraid of more severe side effects coming my way.
Last year my sister suffered a stroke and she was admitted to the hospital. While she was there she had an upper respiratory infection. The doctor prescribed Levaquin. As soon as I heard this I demanded they give her a different antibiotic because of the severe side effects I experienced. The nurse pulled me aside and said she completely understood. She said there are many safer antibiotics and she does not like giving her patients those types of drugs. Having someone in the medical profession verify my fears was so incredible.
Sadly, not a single doctor will ever discuss with me the severe side effects I had from Levaquin or my theory that my RA was brought on by Levaquin. But I am 100% convinced.
THANK YOU for this blog! I am new here and can’t type much bc of hands but I have a question for you so will try to keep short…
I am aware of possible tendon damage/pain due to the fluoroquinolone antibiotics, but have you seen or heard any reports of tendon damage/pain due to Doxycycline?
Over a year ago I had a severe and sudden onset of tendon pain/swelling/heat and am still unable to walk. Rheumatologist diagnosed as Reactive Arthritis but no cause was confirmed. I had been taking Doxycycline for a month prior to this onset. I then was prescribed high dose prednisone at the same time I was taking the Doxy and everything got much, much worse.
I can’t find any literature about it but wondered if you had heard any experiences with the Doxy.
Thanks so much!
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