Yet another long winded stressed out post by yours truly......

Rheumy stopped my mtx 3 weeks ago when they found an infection while testing my  bone marrow protein in a urine sample. I had no symptoms at the time. Lab tests showed the bug to be nitrofurantoin sensitive so was prescribed that antibiotic by my GP.  After two 7 day courses of the drug, the first failed to clear it, my latest urine test results sample submitted on monday, show the infection has still not cleared, which was no big surprise as since finishing the antibiotics I now have symptoms. I spoke to my GP on the phone today and expressed my concerns about the infection persisting...he told me that he'll be prescribing a 3rd 7 day course of nitrofurantoin, which I'll be starting today, and if I still have symptoms after that then I need to come and see him.  

I've had frequent recurring UTIs since I was diagnosed with a chronic bladder condition 3 years ago and it's caused endless complications with treating my RA, including a bout of sepsis a year ago. The bug I most frequently get is an e. coli type which is probably what I have now. It has already become resistant to trimethoprim and amoxicillin that used to kill it. Unfortunately it seems as if the same is now happening with nitrofurantoin, which also worked previously.  

When I had sepsis I decided to go cold turkey and stopped all my immune suppressing meds, enbrel & mtx, and went on pain relief instead to try to cut down the number of UTIs I was getting, hence lowering the risk of getting sepsis again, which originated from a UTI.  I lasted 9 months on just pain relief, most of that time being absolute hell with constant pain and frequent flares of debilitating severe pain in many joints resulting in me becoming nigh on housebound for the last 3 months.  I eventually succumbed to the pain and 10 weeks ago started taking 10mg of mtx again, which thankfully began to improve things after 4 weeks. The only positive during my RA meds abstinence was I did not have a single UTI for the last 6 months, would probably have had at least 2 during that time if I'd been on immune suppressants. 

So I'm in a bit of a dilemma and am seriously considering stopping my RA meds again due to antibiotic bug resistance, which I think has already become a serious problem and not some 10 - 20 years down the road as I've heard said by so called experts on the radio. Anyway, I've got an appointment with rheumy on the 18th to discuss my problems yet again. Probably a non starter, but I'm thinking of suggesting to my rheumy that I go on mtx, or different med, intermittently - perhaps 6 weeks on and 6 off. I'm thinking of this as I've now been off mtx for 3 weeks and though my RA has got a little worse I'm still ok with it. Anyways, it's nowhere near as bad as it was during my abstinence, even on so called good days.  Obviously I need to ask rheumy about this, but was wondering what folk on here think?...who knows there may even be someone who's in a similar boat and taking their meds intermittently...stranger things have happened. I also need to ask my GP if my UTI bug is best left untreated if I don't have any symptoms as was the case this time. I'm sure one of my GPs or some other doc have mentioned this previously.

I could be clutching at straws, but I'm getting seriously concerned with my situation and feel I need to try something different as I'm once again starting to think that I'm batting on a losing wicket carrying on with things as they are.

It's gone 2:30am as I type this and I'm still wide awake. Suppose it just  goes to show how stressed I am.  Wish I was a stronger person and could handle all this crap a bit better.  :(

Oh, surprisingly my bone marrow protein was ok. :)

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30 Replies

  • Wow you have a lot to contend with its a minefield that gets harder to cross as the conditions get complicated I always say you know your own body  and how things make you feel it's getting back in control that's hard I hope you find a solution soon

  • Oh so true, and I've certainly been getting to know my body  very well this last 12 month or so. 

    Thanks for your thoughts June

  • If you don't speak to your rheumy and consult methods of helping your situation you won't know. It might work it might not and unless you try it you won't know will you. Contact them and see what they say.xxxxx

  • My UTIs usually take 2x7 day courses to do the trick, this is the first time that one has needed a 3rd course, hence my concern. So I'll  be having an in depth talk when I next see them, which won't be long.

    Thanks Sylvi

  • Hi , so sad for everything that's happened to you . I think it's a fine balancing act and I would definitely talk to your doc about which line to tread. 

    Think you are right considering various options tho with them .  Xx

  • Thanks allanah,  It certainly is a fine balancing act and my rheumy has been trying her best. She said it's like walking through a minefield trying to find the best medication for me. Trial and error by the seem.

  • 😥

  • so sorry you are having such a rough time. I think it would be good to talk to GP and rheumy and get their take on things. I also have struggled with infections on RA meds but for the last six months I have been on a anti inflamatory diet which has helped a lot and although I have been off Rituximab since November I have not had a major flare which normally would have left me bed ridden roughly 2 days per week. I bought some books on foods that heal and it really does seem to be helping me. I avoid red meat, eat a lot of fish, vegetables, some fruit and am now wheat and dairy free using soya and wheat and gluten free products. Hope you get sorted out soon and sending a big virtual hug to you. Donna x

  • Thanks Donna, I'm such a fussy old git with food that I don't think I'd survive giving up some of the foods you mention. That said, I have cut down on red meat and have always ate plenty of fish and fruit, but could do a lot better with veg. Could give gluten free a go though.

    Good luck with the infections and hope you continue flareless.....

  • Please don't go gluten free until you have been screened for coeliac disease - see my other post about malabsorption problems and antibiotics not working.    Once you start limiting your gluten, then the tests for coeliac will give false negatives.   If you are even thinking about going gluten free, ask your doctor to do the screening blood test for coeliac first - then you will know for sure whether you need to be strictly gluten free or not.

  • I hope your rheumy is one who will really bend his brain to think of a solution for you. Presumably if you're on Enbrel then you've already been through the traditional DMARDs that aren't immune suppressant, like hydroxy & sulpha?   And perhaps there are others that aren't that could be tried? 

    It sounds like a huge dilemma to be in, so hope that you find a way through that allows you to live without permanent pain or permanent infection. 

  • Enbrel was stopped for good when I had sepsis. Consultant reckoned that it played a significant part in allowing the UTI bug into my bloodstream. Apparently it radically lowers the immune system presumably making it a lot easier to get serious infections. I believe a similar thing goes for other biologics and steroids asI can't take any of them. 

    I'm allergic to sulpha and have been on hydroxy for approx 6 months. Difficult to say if its helping any, if it is it ain't helping much. I have a feeling my rheumy might be stopping the mtx and trying me on azathioprime, which I believe is another immune suppresant.  I think the cupboard is pretty bare as far as other effective non-immune suppressants go.

  • Gold injections?

  • I'll ask rheumy about gold injections but doubt she will prescribe them as I've Just done a little research to find they can induce pulmonary lung disease. I haven't mentioned it in this thread, but I was diagnosed with RA related lung disease a few weeks ago.  The chest consultant said..if possible I need to avoid taking any meds that can cause complications with the lungs, which unfortunately for me is the vast majority of RA meds...as if I didn't already have enough problems with meds! He said the only ones that don't affect the lungs are azathioprime and ritiuximab. The latter is a biologic so that's probably a non starter. That leaves just azathioprime, which is why I hinted in my initial post that my rheumy might try another med instead of mtx.  He did add that it may be alright to stay on mtx for a while but I would have to come off it eventually. So I don't see any point restarting it but will see what my rheumy thinks about it all on the 18th.

    I just can't believe how things are stacking up against me. Guess it's now pretty easy for everyone to understand, if it wasn't before, why the title of this thread is"Worried"! The only positive is they don't think my lung disease is currently active. So I'm keeping my fingers crossed yet again, on that one.......

  • Just a thought about your UTIs - and it may be totally inappropriate in your case, but my daughter suffered persistent UTIs. She was eventually referred to a consultant and they tried everything - including an operation to widen her urethtra, and something else that involved self- catheterisation. But nothing worked. And then she tried drinking kefir every day. Vile tasting stuff - goats milk kefir. While she was taking it over a period of about four months she didn't get a single UTI (nor did she get any of the colds that all around her were getting). It was a bit expensive so she stopped taking it - and started getting UTIs again.

    I don't completely understand the science behind it but basically I think the kefir repopulates the bacteria colony in the gut - which is linked to the immune system.

    As I say, it might be irrelevant in your case - but I now take it every day (make it myself) in the belief that even if it's not doing any good it probably can't do any harm. Though I'm only on mtx so would check with a doctor if I was taking a stronger immunosuppressant...

  • That's interesting. I also self-catheterise.  Can't go if I don't as my bladder has no muscle tone. I also have a couple of small bladder stones which were detected by ultra sound scan. My urologist told me the stones can help cause infections and booked me in for a cystoscopy to see what action is required. This was 6 months ago and I had to wait 5 months for an appointment by which time I'd got this infection, so had to postpone the cystoscopy.  The sooner I get these stones sorted the better by the seem of things. Not looking forward to that cystoscopy thing though....

    That kefir sounds a real treat...will ask my docs about it. 

    Hope your daughter gets well soon.

    Thanks dahll54

  • Poor you.  I can't offer anything more to what has be n written above - except more moral support.   J 

  • Thanks for the moral support, Jora

  • So sorry for you but earlier advice to contact rhuemy dept or helpline if you have one seems like sound advice. I usually get a couple of bladder infections a year needing antibiotics and that always causes a RA flare up. Something to do with infection in the body. I wish you well. Jackie

  • Yes, they can cause flares with me. This current UTI hasn't yet though...fingers crossed on that. Have any of your bugs become resistant to certain antibiotics?

    Thanks Jackie

  • Hi. No but I don't tolerate antibiotics very well. Usually upset tum and feel worse than any infection.  Always glad to finish them. I've started to take a pro biotic with them. 

  • Thankfully, I don't have a problem taking antibiotics..yet anyway. Guess that's something to be thankful for.  I think antibiotic resistance, along with other things, can depend on the type of bug that causes certain infections.  Apparently, some of the e.coli types are proving resistant..that's my understanding anyway. Trust me to have one of those little bug-ers

    Long may your bugs continue to suffer a hopefully cruel death with antibiotics. 

    Hope the pro-biotics help.

  • I can't help you with the DMARD questions, but fully understand urinary tract infections, antibiotics that don't work, and drug resistant bugs from personal experience.  One thing that always amazes me in the UK is that doctors just don't bother doing urine culture and sensitivity to actually check which antibiotics are likely to work.  You could try insisting next time that they culture and check for antibiotic sensitivity.  It seems to me to be quite ridiculous to give you a third course of an antibiotic that hasn't worked the first two courses.   The second thing is to try and prevent infections as much as you can - cranberry juice can be good, as can vitamin C in reasonably large doses (changes the acidity/alkalinity of your urine and makes it less likely for bugs to be able to grow).  Even things like changing your "wiping" technique after going to the toilet can help (to stop the transfer of e-coli from bowel).  

    The other thing I would have to wonder about, that was something that affected me for years, was malabsorption problems.  I used to tell my GP it was useless giving me pills as I just didn't seem to absorb them properly.   Several years later it was discovered I did indeed have a malabsorption problem - coeliac disease.   If you have any kind of non-specific gut problems, don't tolerate wheat or dairy well, have sticky poos (a good sign of malabsorption) or have otherwise unexplained low iron, folate or B12 levels, then its well worth asking to be screened for coeliac disease.   Funnily enough, once my coeliac was diagnosed and the gluten free diet healed my gut, I didn't have a problem with pills not working any more.

  • Thanks for that earthwitch, much appreciated. Think it's probably best to forget gluten free, for the time being anyway. I tried a cranberry concentrate for a few months a year or so ago, but it didn't seem to improve things. Would vit C in tablet form be okay? My digestive system seems to be working ok with the help of lactalose as I  occasionally get constipated due to the amount of pain killers I need to take.

    I know exactly what you mean about GPs not doing UTI cultures. It was only after getting sepsis that it eventually sunk in with them that my urine samples needed to be cultured. The lab results for my current UTI show it to be nitrofurantoin sensitive, which obviously doesn't seem to be working, and is the reason why I'm so concerned this time around.  Not so long ago I asked the head GP in my practice why he was not trying a different antibiotic to treat a skin disease I have. Think I'd already had 3x7 day courses of flucloxacillin which failed to work, and he wanted to prescribe a 4th course as I recall. He did not like it one bit when I asked about trying a different antibiotic, and continued writing out the prescription. For reasons best known to himself, he seems a stickler for persisting with the same antibiotic. I've been dealing with a different GP regarding my currant UTI. Spoke to him on the phone yesterday expressing my concerns, and he must have got in touch with the head GP about my case who was present in my local surgery at the time.  So no big surprise that I was prescribed a 3rd course of nitrofurantoin. I was told if I still have symptoms after the 3rd course then I need to see my him, so at least it seems as if some other form of action will take place if the UTI hasn't cleared.  As for my skin infection... if I recall correctly, I had an appointment with rheumy shortly after I was prescribed the 4th course of flucloxacillin and she referred me to a dermatologist straight away. Unfortunately, I still have the skin problem despite using various topical ointments. They wanted to put me on long term antibiotics but both my urologist and chest consultant advised against it. I wouldn't have gone on long term antibiotics anyway, even if my consultants didn't advise against it.

  • Gosh hope you get sorted!! It is a minefield and very worrying so it s hard not to be stressed about it which of course then makes things worse 😢 I take mtx but so far been lucky with other bugs etc I hate taking it and won t take anything else medication wise I try to use holistic stuff to help the general things that come with RA. Take care 

  • Thanks Salsagirl,

    I've always hated taking any form of medication and have tried my best to avoid it, even when I was a young man. I also hate going to see my doctors, probably more than most folk do, as I'm so squeamish and a big baby too. I've had to try and get used to it though as GP surgeries and hospitals are like a second home to me now. :)  

    I was on methotrexate for around 9 years andit worked fine with no side effects to talk of. Things only became problematic when I developed another chronic health condition, ie.my bladder. As for being stressed about it all, I sure have my moments there's no denying that, and was definitely on one when I started this thread, but I switch off for much of the time and just try and make the best of things.

    You take care too

  • I have never had a UTI but a close friend (she doesn't have RA) has been plagued with them and last year she tried D mannose, a natural sugar similar to that found in cranberry juice, which apparently makes the E. coli stick to it rather than the bladder, and she has only had to take antibiotics once. I have no idea whether it can be taken with RA meds but it might be worth researching. It seems to be available quite freely.

  • Interesting, thanks Creaky,  being a natural sugar it should be ok, but will check with rheumy when I see her as you can never be sure about these things.  Better get my pen & pad out as I've got an ever growing list of things to ask her.  Will probably be running well over the allotted appointment time with all the questions I have. :)

    edit...lots of very positive reviews on amazon, definitely worth trying by the seem.

  • Can you take probiotics when you take antibiotics. May stop you from getting e-coli.

  • Thanks Belloftheball,

    I'll ask rheumy on monday.  Urology would probably be the best to ask about UTI issues, but I don't see them until May 17th. 

    Saw my GP on monday, a different one to the GP  that's been dealing with this current UTI to date, and he is concerned that I'm on my third course of nitrofurantoin and it still hasn't cleared despite being sensitive to that antibiotic. I finish the third course in the morning when I have to take another urine sample in to my GP. 

    Fingers crossed it's cleared, but knowing my luck!..........

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