Hi everyone hope you’re all well. Just looking for some advice and to see if anyone else been in a similar situation. I have a recurrent UTI that keeps coming back despite multiple antibiotics. I’ve been off Methotrexate on and off because of this so suffering from a dreadful flare. Anyway had a telephone appointment with Urology and the plan is to take a prophylactic dose of antibiotic twice weekly along with the supplement D-Mannose which will allow me to get back onto the MTX. Originally the consultant prescribed Nitrofurantoin but I thought I had read somewhere that Nitro and MTX can cause lung issues. She agreed and changed antibiotic to Fosfomycin. Unfortunately the Fosfomycin made me feel dreadful for a couple of days and tbf taking that twice a week would be worse than the flare it was so bad. I contacted Rheumatology and they said they’d never heard of any issue with Nitro and MTX but they wouldn’t recommend taking any antibiotic whilst on MTX. I’m getting the feeling no one knows what they’re doing so just wondered if anyone had been in a similar situation and if you take a prophylactic dose of Nitro along with MTX? Apologies that was a bit of a saga but wanted to make sure I got everything down. Any help would be much appreciated. Thanks.
Methotrexate and Nitrofurantoin : Hi everyone hope you... - NRAS
Methotrexate and Nitrofurantoin
Here it’s Hiprex that’s prescibed as an antibacterial method. By Urolgy and I’m don’t think GPs can prescibe it. But it’s taken daily. Fosformyacin is drastic twice a week it’s a big dose and the antibiotic has to be the right the for the bug. It works for me but Hiprex is better and you don’t become immune to it. Just tastes bad.
Hi there thanks so much for replying. The urology consultant said an antibacterial wasn’t appropriate, didn’t say why. I’ve got an appointment with LUTS tomorrow, not sure what to expect or what they’ll do and consultant didn’t know why it had been booked but to go anyway (??) so I’ll certainly question why an antibacterial isn’t for me. Thanks again.
It works for me with ecoli which is stubborn and I’ve had a lot of antibiotics in the past . Make sure that the bug you have is treated with right antibiotics but only Gentamyacin really worked well and it’s a nasty one by injection in hospital. Hence the Hiprex and I’m glad it’s working. Also make sure you’re drinking a few pints a day of water. That really helps too. I drink about 3 pints of water plus tea and coffee, fruit juice etc too. If they do insist on Fosformyacin then take on empty stomach as it’s a big dose and I’ve had it a few times over the years but learnt that empty tummy was vital and at night. It then sits longer and works better. On one occasion I took one dose a week for 3 weeks but 2 a week is massive.
Hi update from urology, I’m now being put on Hiprex instead of Fosfomycin. Not sure why it’s now appropriate when it wasn’t last week. My only concern is they said it can cause stomach problems, which I’m already having thanks to all the antibiotics and being on MTX for the past 10 years. Do you have any stomach issues on it?
None at all but I take with a full glass of water. I started with cutting it in half as it’s a big pill and if it gets stuck it’s simply awful.Then found if taking it with not cold water I could down it in one. It’s not that I have an issue with taking pills just it’s not one for a few sips. I’ve never been told when to take it and I have one dose so take at lunchtime so different from other stuff. It does work for me and damps down the bugs. Much better than antibiotics as we wont get resistance to it. I’m glad for you and wee gets a bit greenish but nothing else.Good news! X
That’s great thanks so much for letting me know. Fingers crossed it’ll do the trick. Take care.
It’s e-coli with me too and was told both Nitro and Fosfomycin were ok. I drink about 3 litres a day, including cranberry juice although I’m not sure if that really makes any difference. Tbh they need to come up with something other than Fosfomycin, I felt dreadful with nausea, diarrhoea and a splitting sore head which lasted a couple of days so that twice a week isn’t much of a life. I hope you don’t mind me asking but what DMARD/biological are you on? Thanks again.
AZA and Etanercept. I’d not volunteer for Gentamyacin again but had it after surgery. It was injection and go home or Infusion and stay in. You can imagine I went for home. But the Hiprex does work well. Check your water as 3 litres is 6 pints and that might be too much and the antibiotics are going through too quickly. Nephrologists like it as it’s kidney friendly. If I were you I’d ask questions.
can I but in here as I’ve only just seen this thread. I have E Coli after water samples kept coming back normal. I had a heavy bleed so was referred to urology for a Cystoscopy and that’s when the infection showed up. I’ve also had a scan and flow test but my copy of the urologist notes said GP to dispense Hiprex. I’ve noticed people have said GP can’t dispense it which explains why I had to fight for a fortnight to get it on prescription. I was told at my flow test that my GP had refused to dispense it at first so I think I am lucky they changed there minds. I’m now fighting to get it put on my current prescription. Can I ask how long you have taken it as I’m told I have to take it for 6 months. I’m worried now that the E. coli will still be there. I’m on Tocilizumab.
I’ve had a lot of blood in pee for years and think but it’s not proven that the Etanercept reduces immune response which means that the antibiotic resistant bug is damped down but never eliminated. I’ve had cystoscope x 3, Stents to see into kidneys, a weird sort of CT and an expensive last resort test for cancer. All show nothing wrong but I have no symptoms apart from blood in pee. I always test positive for the bug but about nearly two years ago refused any more antibiotics hence a referral and all the tests. Result as I have CKD and my Nephrologist talked to the Urologist that Hiprex was prescribed. I’m allergic to penicillin and my Nephrologist gives me a prescription for Mouril for the cupboard but GP doesn’t like that, however that’s his problem. So nearly two years ago the Urologist prescibed Hiprex and it’s true GPs can’t. I don’t know why as it’s widely used and OTC in Australia but I think may have been experimental here. Anyway it does work for me. I take 1 pill a day as have reduced elimination and seems to hold back the bug. I think it does really work and is better as we can’t become resistant to it as it’s an antiseptic not antibiotic. The RA consultant contacted the manufacturer of Etanercept who say it doesn’t cause kidney issue directly but my diary sayes otherwise however as it puts my RA into remission I don’t want it stopped. I see the Consultant next month so will wait and see what happens next. I hope that helps. PS it I was told it won’t eliminate the bug but hold it back and really if 100 woman are tested 95 have ecoli but no symptoms as were badly designed. So it’s very common and most don’t know they have it. Plus and this is a good tip, if your concerned how much blood in pee just prick your finger and drop a drop into a sink of water it’ll go pink hence I photo loo as I had extreme but painless loss.
Thank you for your reply. I just had that one bleed, I’ve been clear in subsequent tests. I didn’t know GP’s don’t like dispensing it so I’m lucky mine gave in. I’ve asked for it to be put on my repeat prescriptions so will have to see what happens. The nurse that did my flow test checked for me and was told I had to take it for 6 months but it sounds like you are on it permanently. I take 1 in the morning and one in the evening. My surgery also has a pharmacy and they told me it’s not a drug they have, it has to be ordered.
PS I should also have said my Urlogist instructed GP to prescibe so it was put on my repeat list but first 6 months came from hospital prescription it might have been when the hospital trialled it. I know it used to be hard to get and was ordered in by pharmacy.
Oh yeah absolutely you want to be home. Thanks again, never occurred to me about drinking too much so maybe need to look at that and will definitely ask questions.
I think the issue with antibiotics and mtx is the mtx reduces your ability to fight infection. So stopping the mtx allows your immune system to get rid of infection alongside the abx (antibiotic). This is ok if it's short term but that ship has sailed for you so it's really now getting an abx that will work and take the mtx. Don't forget different departments in hospital are looking for different properties in the drugs they use and sometimes they lose perspective of the whole picture.(You the patient).
Hi that is very true, you’d think it’d make sense for them to talk to each other.
Common sense and the NHS are mutually exclusive.....last year in hospital I asked a DR how they were going to monitor my lungs after discharge. I was told they would X-ray me in six weeks. When I pointed out they hadn't seen any changes on the previous week's x-ray they said.... maybe I would get worse and they'd see that. Genius especially as I'd been bad enough to require admission for a week on IV abx...I didn't really want to get worse.
You’ve got to wonder haven’t you. I hope you’re feeling better now.
I took Nitro (half a tablet each evening) for a couple of years alongside Methotrexate without any problems. Stopped it approximately 2 years ago and no recurrence of UTI.
Hi sorry you’re feeling so bad. I had the same issue on methotrexate, the last uti was so bad I was wetting myself. I was taken off methotrexate and put on a biological. I was told there were issues taking Nitro and MTX together and always had to stop injections whilst taking Nitro. I would ask for a change of medication if I were you, as you shouldn’t be suffering like this. My rheumatologist was very insistent I stop MTX straight away before it caused long term issues, speak to your team and I hope you feel better soon.
Hi thanks for replying. Unfortunately I’ve not had a permanent rheumatology consultant for over a year as they can’t fill the position so basically the can keeps getting kicked down the road. I spoke to the rheumatology nurse last week who said there was no issue with nitro and MTX but I definitely remember reading it somewhere and you’ve confirmed it. Do you ever have the feeling the right hand doesn’t know what the left hand is doing?
I take a prophylactic antibiotic every day but mine is amoxicillin and only 250mg dose. In my case it’s to help my severely depleted immune system but I did take it whilst on mtx but I wasn’t able to tolerate the side effects of mtx even though I gave it almost a year (I’m not going through that again lol). So it is possible to take a prophylactic antibiotic but as others have said only one that is suitable for your particular situation. I have had nitro in the past for UTI’s but it’s always been a full dose and I haven’t been able to take any meds whilst taking it. Maybe a conversation with a pharmacist might help you get a better idea of what’s good and what’s not prophylactic wise as in my experience medics don’t always know.
hi
I too have had recurring UTI and my rheumatologist said I should have a prophylactic dose of nitro. 50mg daily at night. I am on methotrexate too. I don’t get UTI any more . I did not know anything about Lung contraindications and I seem fine. My consultant is happy for me to remain on Methotexate all the time whilst taking the low dose.
I have had several UTI’s in past 12 months.
Given Nitrofurantoin on two occasions by gp
The 1st time was just before Rheumatology appointment last year and I had noticed on internet that you should not take it if on Methatraxate at time.Thought I would ask rheumatologist if I should on it and showed him what I had seen .He just laughed and said he had never heard of any problems.( Mind you he also said he was covering for someone off ill and as I was1st appointment of day hadn’t read my file before appointment )
Three UTIs in a row earlier in year, while on methotrexate and Benepali. Treated with nitrofuratoin for all 3 infections and RA treatments stopped while taking nitro. Massive RA flare in August as a result of ‘on and off’ meds. I ordered a big tub of D-Mannose from Amazon and take prophylactic daily dose since start of summer and thankfully no UTIs since and able to resume continuous use of RA meds. Check with Rheumy team and/or pharmacist that you have no drug interactions with all your combo of prescriptions. My Rheumy nurse has added this onto my list of medications on my medical notes. The UTIs started when I commenced Benepali - maybe drug specific side effect or the Benepali has lowered my immune system, but as this is working for my RA, team reluctant to change this at moment.
I had pneumonia a few years ago and was told not to take my metho until completely free from antibiotics and infection by the hospital consultant my GP and rheumy, it took 7 weeks x
It’s a long time isn’t it. I had a knee replacement 8 years ago and was off the MTX for 6 weeks but was fine no flare or anything so I guess my RA has gotten a lot worse over the years. Take care and thanks again for replying.
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