Long term antibiotics???? - Interstitial Cystitis Network Support Forum

anxious one · 08-01-2004, 08:38 PM

Hi there,

I am currently in my 5th? 6th? UTI (Losing track) in 5 months. It just doesn't seem to be going away. Am so tired of taking antibiotic after antibiotic! Now my doctor, (Who doesn't seem to think I have IC and neither does my urolagist but neither can explain why my UTIs keep reoccuring) wants to put me on "low dose long term antibiotic treatment." Could I have some feedback please on anyone who has tried this?? I know antibiotics are not beneficial in the overall scheme of things (DUH!) But am at my wits end. Any feedback would be great.

Thank-you,

Sara

Babs RN · 08-02-2004, 07:20 AM

Sara,
I was on long term Septra for recurrent UTI's and pyelonephritis. After 3 months, I was worked up for a retained kidney stone and they found the IC. The diagnostic portion of the IC sage is the hardest, hang in there. You have come to a place of understanding and encouragement while you start you journey.

Warm hugs,
Barb

jen_dahling · 08-02-2004, 07:27 AM

Just wanted to add that my microbiology professor has IC. I found out she was diag. when I e-mailed her about my concerns for long-term antibiotics. We were taught in the course that it is not good to over prescribe and so on. Turns out that she did antibiotic therapy for over 6 months with along with detrol-LA and has been in remission for over a year. Her symptoms were so bad that she considered quitting her job. Also, she didn't like the more invasive treatments like instillations/DMSO etc.
There are a lot of links at the ICN and on the boards about the concern of "deep dwelling undetected" bacteria in the bladder. So many people have benefitted from this type of antibiotic therapy.
Good luck!

***Katrina*** · 08-02-2004, 04:02 PM

My thoughts are that you should get a second opinion as to you having IC. Long term antibiotic therapy without a diagnosis....doesn't seem right. Be Careful. I hope whatever happens you can find a way to be well and feel better.

hugs,

PikkuMyy · 08-03-2004, 03:34 PM

I've been on a low dose antibiotic for 3 1/2 months now and it is the only thing that has helped besides acupuncture. My urogynecologist started me on it because I had also been having a real UTI at least every 2 months, sometimes more often. I haven't had any since taking the antibiotic. I take 50 mg of Macrodantin per night.

***ICNDonna*** · 08-03-2004, 04:09 PM

There are some instances where long term antibiotic therapy is the right route to go. And remember --- and time you have concerns about a particular treatment, it's always okay to see another doctor for a second opinion.

Sending warm healing thoughts,
Donna

debzx · 08-07-2004, 09:01 AM

I have recurring UTI's for almost 1 year and rotate low dose A/Bs however they have started to fail and to be honest the infecs are harder to treat after so many A/bs its finding one that works!!
Today i was prescribed quite a rare one called nalidixic acid!! just hope it does the trick, the worse thing for me is NOT knowing what the cause is and why its happening its so very frustrating and starts to interfer with your life.

debzx

steph4308 · 08-12-2004, 06:03 PM

I've always been prone to UTIs. I take a low dose of Trimethaprim every night to prevent infections. I seem to remember reading that antibiotics irritate the bladder of IC patients. Is this a fact? I'm asking because I'm spasming right now and took the antibiotic about an hour ago.

PikkuMyy · 08-13-2004, 07:27 AM

Some antibiotics cause irritation while others anre anti-inflammatory and sooth the bladder even when it's not got an infection. The latter are sometimes the cause of a delay in IC diagnosis because we'd feel better when we too the antibiotic even though there wasn't an infection. All of the antibiotics I've tried have helped my IC even when I didn't have a UTI (or did) but I've only taken Cipro (helps the most), macrodantin, and macrobid.

***Katrina*** · 08-13-2004, 07:52 AM

Wish I could help you Steph but I have only taken ones that sooth the bladder ...I no nothing of antibiotics irritating the bladder. I don't know the drug Trimethaprim but you could research online. I do think if you feel it is hurting you than you need to talk to your doctor. Even if it normally doesn't hurt our bladders we are all so different that your bladder may react when most would be calmed. I hope you feel better soon.

Saedy · 09-01-2004, 05:17 AM

My family doctor and 1st urologist I saw said the same thing to me...at first it was "Honeymoon Cystitis" that's why I kept getting "Bladder Infections & Kidney Infections", so he told me that each time my BF (now my husband) have sex to take one CIPRO...I did that and low and behold I still got "UTI's" and not to mention yeast infections...then he told me to take CIPRO once a day...did that and still no relief and more yeast infections...finally after the 4th specialist I was finally diagnosed with IC...so I would definetly go for a 2nd, 3rd, 4th, 5th, 6th...opinion. Remember you know your body best.
I hope this helps. Good luck!

blondiecat · 09-01-2004, 06:58 AM

Back a few years ago when I first got really sick with constant UTI's I was referred to Shands Hospital in Gainesville FL for treatment by the urologist clinc there. Anywho I had to take Leviquin 750mg daily for a year. Wow and would you believe it I still kept getting the UTIs and constant pain. Seeing as they never did find what was really wrong they sent me to see the shrink at the hospital.

8 years later and more doctors than you can count on both hands I finally found a urologist that knows what he is doing. I was digonsed with severe IC on August 16, 2004. In my eyes Dr. G is the best one around

sanctuary · 09-02-2004, 11:04 AM

I also was on lonmg term antibiotics.. eventually each one made me have an allergice reaction, first to Erythromycin 500mg twice a day.. they it eventually makde me sick to my stomach and I got rashes..so we switched to tetracycline same dosage and within a week I was sick as a dog..and rashes,, itchy rashes..So I was told to "stop taking any antibiotics by my uro..''About a month later in desparation I decided to try Tetracycline again.... only 1 500 mg once a day for about 3 days during a really bad flare.. then when the flare stopped I stopped taking them.. Now no rashes and no side effects..??? go figure?? In desparation I tried something and it works for me.. I mentioned this to the URO, she was surprised, because according to her" Once you are allergic, you will always be to an antibiotic"..evidence shows this isn't true necessarily.. IT works like a charm for me..Just my own experience,.no MD experienced person here LOL..Sometimes in pain and desparation we'll do just about anything we think can work...

sanctuary · 09-02-2004, 11:58 AM

I agree, it is well known that long term, and in some short term use of antibiotics do cause yeast infections and that can get "out of control quickly" and become a real problem..However..I found eating yogart and other methods, like using "yeast infection" remedies (over the counter)..creams attack these..kind of like a pro-active way to stop them before they occurr while I use the antibiotics for the inevitable infection..that now doesn't occur when I use them for the 3 days, during a flare only.... maybe this can help some of you??Don't know..

***ICNDonna*** · 09-02-2004, 12:47 PM

Be extremely cautious if you take any antibiotic when you have had an allergic reaction. When I developed a penicillin allergy (I had pneumonia and had shots), my doctor told me at that time to never, ever take anything containing penicillin --- he said my next reaction could easily be anaphylactic and could cause an extreme illness and even death. I wear a Medic Alert bracelet for that reason.

Donna