Were you given Cipro or Ofloxacin?
Posted , 13 users are following.
Many of you will have seen my posts warning about problems caused by Cipro (ciprofloxacin) and ofloxacin, two fluoroquinolone antibiotics. I'm trying to get an idea of just how many men have been given either of these antibiotics after going to the doctor with prostate, testicle or just 'down below' pain.
I've posted this question because here in the UK doctors were always advised to hand out courses of 4 - 6 weeks of either drug without having to confirm there was any infection in the first place. In the last couple of weeks (Feb 2019) the official advice for Chronic Prostatitis has just been changed to prescribing, IF an infection is confirmed, Trimethoprim (Bactrim) or Azithromycin . This is a huge turn around which has come about because the European Medicines Agency have ruled that the fluoroquinolones are too dangerous to be used as 'just in case' drugs.
Unfortunately they are still advised for Acute Prostatitis but the dose has been reduced to just 2 weeks (down from 4-6 weeks) - and the doctor is still told to check for actual infection first.
I know that some of you have said that you have had some problems from taking a fluoroquinolone while others have said it cleared up their pain. I'd like to get some kind of figures about whether you've been prescribed a fluoroquinolone in the past (for any problem, not just pelvic issues) and if you noticed any adverse reactions afterwards.
There are 5 fluoroquinolones generally available in Europe and the US - Cipro, Ofloxacin, Levofloxacin (Levaquin), Moxifloxacin (Avelox) and Norfloxacin. There are many other names in use in many other countries (eg. Tavanic for Levofloxacin) which I know is confusing! Please do let me know what your experience of these drugs has been.
I'll make sure the information on this website is kept up to date regarding these new guidelines!
0 likes, 34 replies
keith42667 miriam65408
Posted
I was given what was called "sulphameth" for 10 days as I recall immediatedly being diagnosed with prostatitis by my GP. It did not get rid of the infection, so he then prescribed 2 weeks of cipro. That did get rid of the infection and the minor pain I was experiencing. I didn't like the antibiotics and I think it was those that caused me to lose my appetite and feel just generally not well leading up to my starting cic. Its hard for me to say what was causing what because I still had about 5 days of the cipro to finish when I started zepatier (a DAA drug prescribed for hep c). The anti-biotic was not contraindicated to take with the hep c drug. There were some known minor side effects to the zepatier, even though I can't say I experienced any. So all this sort of happened at once and I'm not much good as a subject for study. All I know is I got through it, cleared the hep c, and still doing cic. I haven't gotten another UTI since starting the cic, at least not one that needed to be treated.
miriam65408 keith42667
Posted
Hi Keith, I'm glad to hear the CIC sorted out your UTIs and your also clear of hepC. Sulphameth is also known as Trimethoprim which is often used as a first line antibiotic for utis. If it doesn't work they should then give a second line such as Cephalexin and keep the Cipro for third line (which is how my husband got floxed!).
The Cipro probably caused you to lose your appetite as it would have killed off all the bugs in your gut as well as in your bladder. This is why it can cause C.Diff to get a grip (see my reply to Alan below).
If you didn't feel well on it, even if you didn't experience any muscle or joint pains, you would do well to refuse it (and the other fluoroquinolones) in future. You may have tolerated it this time but might not be so lucky the next. It's really not worth the risk as for some people the side effects turn out to be permanent.
keith42667 miriam65408
Posted
I was given what was called "sulphameth" for 10 days as I recall immediatedly being diagnosed with prostatitis by my GP. It did not get rid of the infection, so he then prescribed 2 weeks of cipro. That did get rid of the infection and the minor pain I was experiencing. I didn't like the antibiotics and I think it was those that caused me to lose my appetite and feel just generally not well leading up to my starting cic. Its hard for me to say what was causing what because I still had about 5 days of the cipro to finish when I started zepatier (a DAA drug prescribed for hep c). The anti-biotic was not contraindicated to take with the hep c drug. There were some known minor side effects to the zepatier, even though I can't say I experienced any. So all this sort of happened at once and I'm not much good as a subject for study. All I know is I got through it, cleared the hep c, and still doing cic. I haven't gotten another UTI since starting the cic, at least not one that needed to be treated.
alan86734 miriam65408
Posted
Dear Miriam,
We exchanged e-mails mid 2018 and, after a short hospital stay I contracted C-Dif which put me out of action for several months, hence my silence not responding to you. This is a commonly occurring bacterium, but something I would not wish upon my worst enemies!
Fluoroquinolone issues: I was prescribed Cipro to deal with four separate incidents of UTIs. The prescription regimen was 500 mg twice daily for a course of 2 weeks for each of the four UTI occurrences. I have to admit that Cipro was an extremely effective A/B. Unfortunately it was also against the host (yours truly). Initially I did not suffer ill effects other than painful wrists, but the final session caused some of the classic symptoms you have described so well in the past.
And, on occasions, I am still not taken seriously!!!
By this time I was beginning to see reports in "Patient", to which I already subscribed for support for my self-catheterization. My information was reinforced by some very compelling evidence from an orthopedic nurse who was concerned by the rise in patients presenting with torn tendons (surprise, surprise!).
For the record, I live in Vermont (north eastern U.S.A. and I can PM you with any further information you may require.
Warm regards, and thank you for all your hard work!
alan86734.
miriam65408 alan86734
Posted
Hi Alan, it's always good to be reminded of past contacts and thanks for your thanks - it is hard work!
Did you contract the C.Diff after a course of Cipro by any chance? I ask because the use of Cipro, here in the UK anyway, had already been somewhat restricted in the UK because of the risk of C.Diff getting a grip after all the other gut bugs have been wiped out by the Cipro!
After the FDA announcement in 2016 about the dangers of FQ side effects, the EMA (European Medicines Agency) started a review here which took 2 years. They announced their findings last October but only passed them into law last week so hopefully Cipro and the rest will be prescribed much less from now on. For example, they're not allowed for utis or some prostate problems any more.
Take care - and never take a fluoroquinolone ever again!
alan86734 miriam65408
Posted
Dear Miriam,
As it happened, no, I was already working towards alerting the medical profession. One of the difficulties here in the U.S.A. is that Bayer notified doctors, but no one else. We have Nurse Practicioners who are allowed to prescribe medications (including A/Bs) but were out of the information loop. There may be other medical grades out there who are also prescribers which I would not be aware of.
Changing the subject completely, you mentioned to me that you were having trouble with the Poiesis catheters used by your husband. Evidently one or both balloons were deflating. Having given this some thought, I came to the conclusion that the problem could be due to the retention valves, located in the funnel where you connect the syringe to inflate/deflate the balloons, were leaking. If my assumption is correct you could possibly solve the problem by finding a suitable plug to block the flow of liquid and prevent it from escaping. Nuisance factor increases, but it may bring about a satisfactory solution.
All the best!
alan86734.
miriam65408 alan86734
Posted
Hi Alan, yes Bayer did send out a letter to doctors after the FDA announcement regarding the dangers of FQ side effects back in 2016. It looked like a complete cover their backsides exercise (they've done their bit!). The FDA apparently made a conscious decision not to write to every health care provider themselves, saying that the media attention would do the trick. Not so.
In Europe, the EMA have finally made their new restrictions law just last week (after 5 months wait!). When we were sending submissions to the review team and also when we were speaking at the Public Hearing last June, everyone stressed how low the reporting was of FQ side effects as no doctors had heard of them. If a doctor has never heard of it he's never going to diagnose it, right? They told us they understood this information. When we saw the new Legal wording of the alert it starts with the words "Very rarely..."
So, they have sent out alerts to all HCPs across Europe which will not make any impact as any doctor or nurse reading it will see that it's very rare and they'll never come across it themselves. They have done their job, and, as with the FDA, nothing at all will change!
Thanks as well for the tip about the Poiesis dual balloon catheters. We never had any trouble with our first batch as we wonder if this second pack (of 25!) might be faulty. We've had two main balloons burst inside the bladder and several deflate. I saw someone else say that Poiesis themselves have suggested filling the balloons with 10% glycerine added to the syringe (bigger molecules) and I've tried this but it still deflated. You may well be right, there is a problem and my husband is so fed up he's decided to go back to intermittent self cathing for the time being. Unfortunately his hands are too weak (from MS - which is why his bladder sphincter packed up in the first place) so I have to do it for him! Still, it's more comfy for him without all the tubes attached!
Stay happy!
dcooperxyz miriam65408
Posted
HI
i have been prescibed Cypro on multiple occasions for 4-6 week courses for prostaitis and Uti's . Im in the Uk and the first time i had Prostatitis it did work, or maybe it went away on its own, who knows. The second time i had prostatitis i was given a 6 week course which did nothing so i was given another 4 weeks! no change, but it eventually went.
i do now suffer from annoying twitches in my leg muscles . could that be related ?
tom86211 dcooperxyz
Posted
One of the side effects of Cipro is that it can effect your central nervous system, so it's possible that the twitching is related. I was jittery for months after my Cipro but I can't prove that it was the cause. If we could absolutely prove that Cipro caused our issues there might be a huge class action lawsuit, but, so far, nothing.... Eventually, you should improve. My jittteriness is now gone, but it took almost a year.
timothy81571 dcooperxyz
Posted
Interesting. I had a twitch in my back shoulder for 6 months after taking cipro and pulling weeds in my yard. Very irritating,
TKM dcooperxyz
Posted
DC,
I had a twitch in my upper back about 6 months after taking Cipro. It was there for about a week then went away. Don't know if it was related.
Thomas
miriam65408 dcooperxyz
Posted
It could very well be related and that's actually quite a lot of Cipro so, if it is related, I'm surprised it's not more than twitches! How long since you took the last course? Was it in the last 12 months? If it was perhaps be careful of overdoing any exercise and steer clear of NSAIDs (e.g. Ibuprofen) and steroids for a while yet.
Did the doctor ever check for an actual infection? The new EU guidelines (from last month) say they must confirm an infection before prescribing an antibiotic now - and they should use Trimethoprim, not Cipro as it's considered too risky!
One other thing docs never seen to mention is that prostate pain can often be caused by stress and can be dealt with by 'pelvic-pain' exercises - you can search for these plus there are discussions on here about them. So maybe it did go away on it's own!
Good luck and I hope nothing more than twitches occur.
miriam65408 TKM
Posted
Ditto what I just said to DCooper, you'll never know as Cipro pains manifest as all sorts. The drug gets into all of your tissues so muscle, joints, skin, organs, everywhere and it causes metabolic mayhem. In some people this is agonising pain while in others it's nothing - or maybe just a twitch. The effect depends on your health and age, your fitness level and how much you took. Most people get over it without even noticing anything while others are not so lucky. This is why the EU guidelines have been changed (in the US they were supposed to tighten up on FQ use in 2016).
If you are ever offered any of the fluoroquinolones again perhaps ask if there's another option as, if this was a side effect, you might be at risk of a more serious problem next time.
derek76 miriam65408
Posted
My first reaction to Cipro/fluoroquinolones was in 2012 but I quite possibly had been prescribed them before as I had prostatitis of and on from the mid 90's. When did they first come on to the market ? Somewhere I have a list of medications prescribed from then until 2004 that my then GP gave me to pass on to the hospital where I had GL/PVP.
miriam65408 derek76
Posted
Cipro was first licenced in 1987 and grew in popularity over the next decade to become one of the most prescribed drugs in the early 2000s. It's had a bit of a decline in the last 4 or 5 years because of the fears of AB resistance - also, all this talk of serious adverse reactions is finally starting to make a small impact!
I don't know when it was first used for prostatitis but it may well have been in the 90s as it was soon realised that Cipro and the other FQs had excellent tissue penetration (thanks to the fluorine element).
derek76 miriam65408
Posted
I've lived in three different places in that time and so had a good chance having had it long before any awareness about it. The 1980's doctor was not very good and always very quick to prescribe although I did not have any prostate problems until the mid 90's.
Then that one tried not to prescribe. Consultations used to go... What do you think it is ?? If I give you medication you will probably get a side effect from it............. If I send you to the hospital you will probably pick up a hospital acquired infection...... Shall we leave it for two weeks to see how it goes ? I always replied that I'd already waited two weeks to see how it went.
dcooperxyz miriam65408
Posted
Thanks Miriam,
My last round of Cipro was in October 2018 for a nasty UtI. The first time i was treated with Cipro was around 2014.( 8 (weeks) this was after a biopsy confirmed prostatitis. I assume because it showed up on both an MRI and a biopsy it was the bacterial version but im not sure. The next time i had it ( jan 2018) I was given another 8 weeks but it did nothing, and i agree totally that most prostatitis are not bacterial.
regards
Darren