Had to stop my meds again

Been off enbrel and mtx for just over a fortnight due to a urinary tract infection. Starting to flare rather badly now - hands, feet and knees. Latter is the worst..both knees inflamed and pretty painful, very much so when getting up off sofa or climbing stairs. :( I'd only been back on my meds for 3 weeks after a previous viral infection..was off my meds for 3 weeks with that, but only flared a little back then. Strange how I'm worse this time despite being off meds for a shorter period. Finished antibiotic course on thursday, urine sample taken into GP on monday and should have result on friday. Just hope it has cleared so I can start meds again. If it hasn't, and it's taken 2 courses of antibiotics to clear my recurring UTIs in the past, then that's at least another fortnight off meds, which means big trouble lies ahead! :( To make matters worse, my GP has told me that the type of bug I get (ecoli) has become resistant to trimethorprim, which apparently is the drug of choice for that bug. I'm a bit curious as to how they know my ecoli bug has become resistant to trimethorprim, as to the best of my knowledge I've only been given it once before for a previous UTI. Am wondering if microbiology discovered this when they examined the initial sample of my current UTI in the lab?

Anyway, apologies for the long winded moan, but these recurring UTIs aside from causing problems with my RA, do worry me a bit, especially when I'm told that my nasty little bug-ers are starting to become antibiotic resistant.

Oh, forgot to add.. just to round things off nicely, I can't take anti-inflammatories to help with flares because of a heart condition.. I had a mild heart attack 10 years ago, which, rather ironically, I'm convinced was caused through taking ant-inflammatories long term.

Rant over! :)

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22 Replies

  • Hi wishbone. To answer your question on antibiotic resistance, if you gave an urine sample it would have been tested for Sensitivity to antibiotics. This would have shown it was not killed off by Trimethoprim therefore the bacteria is resistant to it.

    Hope your uti clears up pronto so you can get back to treatment and feel better.

  • Thanks for that Rawelham, thought I'd made everyone too nervous to reply with my spleen venting post :)

    I was prescribed amoxicillin for this current UTI, which I'm presuming means that this was also tested in the lab and it killed the bug I have, or should I say had if the amoxicillin's done its job??

    Funnily enough, I just caught a brief snippet on Radio 5 news about GPs over prescribing antibiotics or something like that.

  • Sorry to hear this Wishy. I take MTX & start to feel RD becoming uncontrolled after 3 weeks off it. I found this 're Trimethoprim on Patient.co.uk, it may answer your query.


    Trimethoprim or nitrofurantoin remains the drug of first choice for the empirical treatment of uncomplicated UTI. 10-20% of E. coli infections may be resistant. Current recommendations suggest that the treatment period should be no longer than three days in women with uncomplicated UTI, although should remain at seven days for the treatment of UTIs in men."

    Your GP should really have explained this to avoid you worrying! It does seem you're in that 10-20% for whom it doesn't work. I hope it's cleared so you can get back on your meds soon. :)

  • Thanks for that heelsy,

    Just my luck to be in the 10 - 20% bracket. I really don't know if I should be worried or not about this? I hear so much about these antibiotic resistant bugs that I can't help worrying when I get a UTI, obviously more so because I'm on immune supressing meds.

    The guidelines from rheumy about taking trimethorprim appear to have changed recently..used to be that I should not take it at all when I have a UTI and to carry on taking my mtx (wasn't on enbrel when I had my last UTI) along with a different antibiotic. When I phoned the helpline about my current UTI, they said I should stop both enbrel (obviously) and mtx, and to take trimethorprim as it was the drug of choice for UTIs. It was after phoning the helpline that I spoke to my GP on the phone and she told me about my e.coli being resistant to trimethorprim. She then prescribed amoxillin, so I thought I would be ok to carry on with just the mtx as amoxillin doesn't clash with mtx. But she told me to stop the mtx as well as enbrel, which concerns me all the more. Think I really need to discuss my concerns with my GP the next time I see her/him. In the meantime I really need to try and chill out..now where did I put my tramadol.......;)

  • Sorry Wishy only just seen your reply whilst idly wandering through the site! Well you're obviously special aren't you, being in the 10-20% bracket?! ;)

    I don't know about Enbrel as I've not needed it but as I understand it any of the penicillin or sulfa based antibiotics are best avoided when on MTX because they interfere with how we rid it from our body (kidneys) & so can increase the side effects of the MTX. My GP considers which is the better antibiotic to treat whatever is ailing me & if it's penicillin (amoxicillin) she suggests I don't inject my MTX for the length of the course. Similarly when I've had tetracyclines, she's said to stop MTX & also to take my AdCal-D3 & the antibiotic at least two hours apart.

    I understand why you're concerned & I'd do as you intend & ask your GP for clarification for peace of mind. :)

  • Ah right, it was because I was given a penicillin based antibiotic that my GP stopped my mtx.. thanks for enlightening me heelsy. As you've seen from my recent new post, the amoxillin did the trick. That's the first time that a UTI has cleared for me with the first course of antibiotics. If it had taken another course to clear then I would have been in deep RA trouble before much longer, which in turn causes problems in treating my other health condition. Three cheers for my GP then!..... :)

  • Yup, been there only a couple of months ago when I had an infection & 3 weeks of antibiotics & no MTX. I sure was ready to start it again, the beast within was grumbling! I hope your UTI has been properly knocked on the head then you can settle into your meds again. You certainly don't want further complications either do you? Been there, done that & he's recuperating next to me lol! ;)

  • You know the feeling then! Good to hear that H appears to be recuperating nicely. :)

    My sample was submitted 3 days after I finished the antibiotics, possibly should have left it a couple of days longer to make sure I was clear as I don't really get symptoms with early stages of UTIs.. just a show of blood this time around, and that cleared when I started drinking copious amounts of water. Do you think I should ask doc about giving another sample next week or am I being paranoid?

  • I suppose he/she thinks it necessary then another will be orderered so if it was me I wouldn't worry. First sign of it returning though I'd be down to the GP again. I understand why you'd want to be doubly sure but I'd just keep drinking lots & be super diligent when bathing or showering. :O

  • Will do, thanks heelsy.

    I didn't see what you said in my other thread about how well H is doing when I commented about him recuperating in my above reply. Glad he's doing so well. By the sound of things he'll be washing his compression stockings in no time. :) Seriously though, I know a few people who have had bypass ops and it's marvelous the improvement they can bring to someones life. Hope I'll never need one, but it's good to know they are there if I do. Hope the waiting time comes down a fair bit though unlikely as that is.

  • Thanks Wishy. Hopefully it won't come to that & I wouldn't wish it on you but if it comes to hey lads hey question if "Enhanced Recovery" is an option where you are.I'm convinced that made the difference. I will be interested to know if he was given the placebo for the trial as well, difficult to know! To say the Cardio Unit covers such a large area, being a centre of excellence in the NW, it was not too long to wait but I suppose much depends on how urgent surgery is.

  • Perhaps gp was thinking along the lines of immunosuppressive action of mtx which would prevent u clearing the uti if u carried it on, rather than it interacting with the amoxicillin?

  • I understand that, but what puzzles me a little is that with all the UTIs I've had, I've carried on taking DMARDs, including mtx, while taking the antibiotics. Just seems a bit strange why my GP has decided to stop my mtx for this current UTI and not for previous ones.

  • Hi Wishbone. So sorry to hear you are going through such a horrid time right now. I'm writing you because I want to understand WHY you need to go off your RA meds when you are sick with something else. I've read on this forum others doing the same. I just don't understand it - it doesn't seem worth the flares/relapse. I have never had a doctor ever tell me to go off my RA meds since I started them over 3 years ago.

    Thanks :)

  • Thanks Karen, The meds we take for RA lower our immune systems. With a weakened immune system it is more difficult for our bodies to get rid of an infection such as a UTI. Hence either rheumy or GP will often stop our meds to raise the bodies natural immune system, which will then be more able to fight against infections. Problem one is.. once the meds start leaving our bodies they start losing their effect and RA will start to flare-up. Problem two..if we carry on taking meds with an infection then it's possible that it will get worse, and we can become seriously ill and possibly die Don't know about you but I don't fancy that one bit! :) so would rather put up with the pain of an RA flare as bad as that is. It's all a vicious circle really and the reason why I get a bit down and stressed when I get a UTI. :(

    Hope I've got the above right and explained things ok. If not then hopefully someone more clued-up on the matter than me will be along to put things straight. :)

  • Thanks wishbone. I had pneumonia last Spring, which I thought was pretty serious in itself, but there was no suggestion anywhere or from anyone that I even consider a break in meds.

    Everything seems like such a crapshoot, doesn't it?

  • Yes it does..there's no hard and fast rules that's for sure!

    Pneumonia is pretty darned serious in my books too..glad you got over it ok.

  • We are very close to a period of time where antibiotics will fail to work.

    Over the last few years hospitals have been taking smears to test various antibiotics against the infection the patient is suffering from. In this way they can find an older medication that may now work, they then piggy back several antibiotics to get a one that works.

    We are now on borrowed time for the treatment of biological infections and very few of the drug companies are doing research in antibiotics as the money they can make is restrictive to what they can make from antibiotics as the infections get used to the new medication very quickly.

    It is unfortunate that RA sufferers suffer from over active immune systems that have to be suppressed to prevent damage of a damaged joint. So many patients on Biologics and Dmard medications have to think hard what form of treatment they wish to follow. It is a matter of checks and balances


  • Yes, I have heard about this Bob. The drug companies and the powers to be need to get their act together sharpish or we'll be entering dark times before too long.

    There was a snippet about antibiotics on this radio this morning. Didn't quite catch it proper, but think it was to do with doctors still handing out antibiotics too freely. I recall the government telling them a while back that they need to try to cut down prescribing them. Apparently, handing out antibiotics willy nilly over the decades is a lot to do with why these bugs have become resistant. Another cause I believe, is the amount of antibiotics that's been given to farm animals, hence the stuff is in a lot of the food we eat.

  • We all need to have a good rant from time to time.

    I have been on Enbrel for over a year and like you I have had a month's break from my injections because of an infected gall bladder which I had an operation to remove a couple of weeks ago.

    Also like you, I've had bad painful hands, knees and ankles, a bit of a reminder how painful our condition is when untreated. On the plus side it is comforting to know how well Enbrel is controlling my RA.

    However, none of what I have said is very helpful to you, apart from the fact that you are not alone in your suffering !!

    I had the Ecoli bug a couple of years ago and it's not a nice bug to have to put up with. I lost a lot of weight because of not being able to keep anything I had eaten inside me. Nice to lose some weight, but not that way.

    I'm sorry to hear of your heart problems, an added worry I'm sure, but I hope you get better soon and get back on your Enbrel and feeling better. Take care of yourself. June x

  • Thanks for the support and nice words June.

    An infected gall bladder sounds fun, as does its removal!! :( Hope the op went ok and are you are feeling better for it?

    Are you back on enbrel now? I've been taking it for around a year and and it's done wonders for me.. big improvement just 3 days after my very first injection. If it wasn't for these recurring infections hitting me back every so often I'd be a happy man.. well, reasonably happy anyway ;) instead of feeling sorry for myself and moaning on here.

    My arthritis is getting worse by the day - I wasn't good last night or this morning as elbows and shoulders are also starting to play up. Hands are now the worst though, it's very difficult just washing them. I've been down this road a few times before so know what's coming if I can't get back on meds soon. Think I'll phone GP's today instead of tomorrow on the chance that my test results are in, just hope the infections cleared....

    Oh 'eck, I'm starting to ramble on again, best sign off now... :)

    Thanks again and and hope enbrel continues to do its business for you.....

  • I have sent you a PM. Virge

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