Antibiotics
Next time someone asks me at a party if I take drugs, I'll show them this page.
It is important to understand that with chronic UTIs, or interstitial cystitis, you are likely battling an embedded, undetectable and recalcitrant bacterial biofilm infection. It is not enough to say that IC is not a bacterial infection because there is no evidence of bacteria. That would be false logic. And so to get out of pain, you will need to take longer and higher doses of antibiotics compared to standard treatments.
I am unfortunately allergic to sulpha drugs and have been unable to take trimethoprim (Bactrim) which is a first-line antibiotic to fight UTIs. If you're not allergic, you are likely to be given a standard course of Bactrim or Nitrofurantoin (Macrobid). Neither worked for me. Because I've been referred to the LUTS Clinic at Whittington Hospital, I have been treated with a cocktail of antibiotics on a trial-and-error basis. More on the methodology in My Story and on the Live UTI Free website.
The antibiotics I've tried are:
* Nitrofurantoin * Ampicillin * Ciprofloxacin
* Doxycycline
* Oxytetracycline
* Cephalexin * Nalidixic acid * Co-amoxiclav
* Fosfomycin * Azithromycin * Clarithromycin
* Metronizadole
* Clindamycin
* Methenamine
Two crucial points about my experience with this long list of antibiotic drugs.
1. You are unlikely to have to take that many and that variety. As I mention in My Story, I'm a minority of patients who didn't get cured in the average treatment periods.
2. The logic of the treatment is to attack the infection through a 'family' of antibiotic drugs - penicillins, quinolones, tetracyclines, etc. - and see which make a difference. The hypothesis is that chronic cystitis or IC is a polymicrobial infection, where one set of bacteria rejoices when another set dies. It is only recently that microbiologists finally discovered - and urologists admitted - that the bladder microbiome isn't sterile.
Worth noting also that apart from the occasional anti-fungals, two other drugs are constant companions to the main antibiotic - methenamine (more on it below) and amitriptyline, an anti-depressant which I cover in Pain.
Nitrofurantoin
Efficacy rating: 6/10
If you can't take Trimethoprim, you will be given 'nitro'. It is especially formulated for UTIs. Don't be alarmed if your pee turns brown. I had several rounds of it, a month at a time, also as a classic prophylactic after sex. It helped for a bit, then didn't help, then caused stomach pain, and then I got given...
Ampicillin
Efficacy rating: 5/10
Still on GP regime, I wrangled a round of Ampicillin, thinking that a broad-spectrum penicillin-based drug will kill all bacteria that is lurking. Seven days was not enough. Time to escalate...
Ciprofloxacin
Efficacy rating: 7/10
A kindly urgent-care doctor at St Johns & Elizabeth Hospital prescribed me a week of Cipro, by all accounts a magic fluoroquinolone drug with dangerous side effects. A week made a difference but it didn't last. Professor Malone-Lee, the guru behind LUTS at The Whittington, was dead against Cipro. He believed that the infection comes back harder after Cipro, and the risks of side effects for long-term use are too high.
Doxycycline
Efficacy rating: 8/10
Angela Kilmartin, still a formidable authority on UTIs, is a great believer in doxycycline as a treatment for incalcitrant mycoplasma infections. It took at least a year before I got my hands on doxy and it did provide the biggest breakthrough and relief from the worst and gnawing pain. The nausea and sun sensitivity were debilitating, but it was the first drug that made a lasting difference. Alas, it wasn't allowed to be taken for long, and was switched to...
Oxytetracycline
Efficacy rating: 8/10
From the same tetracycline family as 'doxy', oxy was another long stretch that provided relief. It stopped working too, primarily because both doxy and oxy started causing the merry-go-round of fungal infections.
Cephalexin
Efficacy rating: 7/10
This is a cephalosporin antibiotic I've been on the longest. When the tetracyclines stabilised the pain and flattened the infection curve, which LUTS measures at every visit, I was placed on long-term Cephalexin. I was on it for nearly a year. It started causing hair shedding, so I had to stop. It was pain versus vanity. The hair is fine now.
Nalidixic acid
Efficacy rating: 9/10
Nalidixic acid works. It's another drug from the quinolone family. The snag is - it's no longer available in the UK or Western Europe. For a while, the clinic was prescribing it to great effect, and my doctors as well as myself were very disappointed when its production was discontinued. If you can source it via your doctor/pharmacist, see if you can test it as the next drug after the first-line prescriptions.
Co-amoxiclav (Augmentin)
Efficacy rating: N.A/10
There comes a moment in everyone's treatment when a doctor whips out Co-amoxiclav. It's ampicillin (yes, back to the beginning), but mixed in with clavulanic acid for extra efficacy. Many patients in online forums had great results with this one. Alas, the 'acid' in clavulanic acid made it extra agony, and so this drug was not for me.
Fosfomycin
Efficacy rating: 9/10
Fosfomycin, also known as Monurol, is a treat. The Prof called it a 'breakthrough' agent, meaning that when things got really tough, as in a blazing flare, you took it to ease the suffering. And ease it did. Some report it as the magic ingredient that fixed all their pain in three dosages. In my case, nothing was ever fixed, but relieved for sure. It cannot be used on its own, according to the Clinic, and is now prescribed in extremely rare circumstances. Why? It's $200+ per sachet.
Azithromycin and Clarithromycin
Efficacy rating: 7/10
I'll combine these two antibiotics as they are from the same family, except for dosages. I actually started my antibiotic journey at the Clinic on azithromycin and it worked wonders at first. I remember with great clarity my first Christmas after I 'joined' the clinic and I was no longer in pain. I was even encouraged to take it every other day - so well was the treatment going. But the infection and the pain kept coming back. After years of different antibiotics, I returned to azithromycin last year and after making no difference in infection markers, was 'transferred' to clarithromycin. It is now the default drug for me and I take it twice a day. It causes a dry mouth but that's a small inconvenience.
Clindamycin and Metronizadole
Efficacy rating: 8/10
What if the infection isn't in your bladder? The female pelvic floor is a compact, tight structure and theories abound that the bladder, the urethra, and the vaginal wall are all interconnected tissues that cause infections to become, well, interconnected. And what if the bacteria isn't the 'usual' gram-negative bacteria, but gram-positive bacteria, and needs a different family of drugs altogether.
This is how during a recent routine gynaecological test, I got prescribed metronizadole. That was a nightmare. Under no circumstances is alcohol allowed. You will not die but you will feel like you are. My pharmacist made me swear not to pass a drop. I didn't. But its half life is a few days, so don't make my mistake and think you're out of the woods at the last tablet.
On the other hand, the clindamycin cream (Dalacin) has made a difference, and my current doctor at the Clinic is open to give it to me to top up standard treatment.
This is not to suggest that the infection isn't in the bladder. It's to say that when it gets to a chronic state, all sorts of adjacent tissues may be contributing to the overall condition.
Methenamine (Hiprex)
Efficacy rating: 6/10
Finally, methenamine - strictly speaking not an antibiotic, but an antimicrobial agent. It is a favourite of Prof's Clinic, and is used as an accompanying drug to help make urine sterile so that bacteria can't grow in the bladder microbiome. I took it for years with good effect, until its acidic nature started making my symptoms worse not better, thereby proving that both the body and medicines contribute to changes to symptoms over time. You can replace methenamine with mega-doses of Vitamin C.