Fed up of being fed up

It's been 3 months since my RD immune suppressing meds were stopped due to a long standing UTI. Was supposed to have a cystoscopy to investigate bladder stones last tuesday, but when I informed the urologist that I still had the UTI he said he couldn't perform the cystoscopy if I still have the infection. This is despite being told over the phone a week earlier that I must not postpone the cystoscopy again (I postponed one several weeks earlier) as I would be given an antibiotic injection which would lower the risk of the infection becoming more serious due to the cystscopomy. The urologist looked at my records and said the infection is nitrofurantoin sensitive so he would prescribe a 5 day course of 200mg daily, then a 4 week course of 50mg daily, which would keep me supposedly infection free for a cystsoscopy that will take place in the middle of the 4 week course. This all seems to make perfect sense except for one thing, which some of you may be aware of from my previous rants - I've previously had 4 weekly courses of nitrofurantoin at 400mg daily which obviously hasn't worked, so just how a lesser dose is going to have any effect has got me beat. When I mentioned this the urologist said that the low 4 week course, which I started on sunday, would keep me infection free for its duration so he could perform the cystoscopy, but unfortunately the infection would return after I finished the antibiotics. Again this all appears to be A OK, except that I was still getting UTI symptoms (which have returned again today) while taking the 400mg daily courses, so how on earth I'm going to be infection free for the forthcoming cystoscopy from a lower dose is beyond me.

I'm starting to think that I'm becoming a bit of a nuisance with my queries as whatever I say seems to be ignored. Maybe I'm missing something and the docs know something I don't, but can't for the life of me see how any of the above is going to have the slightest effect on this infection. On the plus side...the rheumy nurse phoned while I was at urology - she told my wife that my rheumatologist is going to have a word with the urologist about me, so hopefully something positive will come out of that. I'll phone next week to see if there's any news.

I know this probably isn't the right place to post something like this so understand if I don't get much response, but it's all beginning to get on top of me now and I really don't know which way to turn. To top it off I've been given more antibiotics for a chest infection. :-( On a more positive note, my flares are nowhere near as bad as they were when I previously stopped all RA meds, perhaps due to the 400mg of hydroxy I've been prescribed. Just hope it continues......

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12 Replies

  • Hi Wishbone,

    Sorry to hear you are having a difficult time . At NRAS we have a dedicated helpline team to support with any RA related issues- even if it is just getting things off your chest when you're feeling a bit fed up. If you would like to speak to someone they are contactable by email at helpline@nras.org.uk or our free phone helpline on 08002987650.

    Hope you are feeling better soon.

    Best wishes,

    Nikki Tee

  • Thanks Nikki, I'm aware of the NRAS helpline and have thought about phoning on a couple of occasions. I've posted a couple of times in the recent past expressing my anxieties on this forum and have had good advice, support and reassurance from the nice folk here, as I have this time. Hopefully things won't continue to go downhill for me, but if they do then I can see myself ringing the helpline, besides it's a lot easier for a one finger typist to have a chat over the phone than it is to type out one of my rather long rambling posts. :-)

  • I'm glad to hear you are getting such good support from HealthUnlocked. If you do need to speak to them they are a very friendly and knowledgeable bunch!

  • Hi Wishbone,

    I have had many issues with UTi''s over the years and they can really pull you down. I found a lot of information and help with the cob foundation. They have an advice line also. Bascially bladder health and really know about UTI,s also. If you want more informantion message me and you will find them online also. Good luck. I take methraxate, Steriods, Extercoxib and Hydxcloroquine. Good luck x

  • Hiya Louise, my daughter has the same name. :-) Thanks for the advice

    I phoned the cob foundation advice line earlier and had a very informative chat with a lady who seemed to know her stuff. I gained some useful info on D manoose supplement that I've got on order - think I need to order a fair bit more than I have. We also had an interesting chat about antibiotic resistance and urological treatment for my condition.

  • Your welcome. Hope things improve soon. X

  • Wishbone,

    I was going to reply last night but had connectivity problems.

    I read your post and, it took me right back to where I found myself in February time.

    At the beginning of Nov I was rushed into hospital with acute kidney failure.This was attributed to the methotrexate injections that Imwad on.Imhad been taking them for just over 18 months.I had some awful side effects from them but that's another story.From that day on I had all my RD meds stopped.Sulphasalazine and mtx jabs.I also had my list optic stopped ( a kidney protecting drug but if you are unwell it can actually have the reverse effect) and also my warfarin dose. Which turned out shouldn't have been stopped.It was done in error but despite my protestations, I was more or less told that as doctors we know best.On leaving hospital they acknowledged it was a mistake and so I had to resume anti blood clotting medication by way of heparin injections in my stomach for 12 days.

    The only RD med I could have was hydroxy,and to be honest I may have well been popping smarties for all the good they did.When Inquextioned it I wad told they may not do much good but would cause a flare up,if I stopped them.So I carried on taking them. I was feeling pretty cheesed off at this stage.

    I want able to resume any RD meds until beginning of April so that was 5 months without any at all.The pain Imwas in was unspeakable,and very often couldn't even get out of bed.zchristmas was a complete write off,so was my birthday and my husbands birthday so a number of occasions went by unmarked.

    Just after Christmas I developed a problem on my legs.Ulcers on both legs and leaking like a tap.Inalso developed a very nasty infection on them 3 lots of antibiotics and them infection cleared up.I am in compression bandages to try to get them to clear up but it is slow going and I still have the bandages to show for it.They are now becoming very warm in bed at night the weather is now generally getting warmer and so I don't get a decent nights sleep.

    As if that wasn't enough on 4th January a cloud seemed to decend over my left eye and I couldn't see anything.Visit to docs and specialist optician and another emergency admission to,hospital with a suspected detached retina.As there was so much blood in the eye they couldn't provide an accurate dosgnosis until it started to clear nearly a month later when they concluded it was a very bad vitreous haemorrhage which is still ongoing but improving.

    For good measure I have suffered a chest infection - more antibiotics and even more antibiotics to clear up the leg infection which has now returned.

    So I get exactly where you are coming from with being fed up,of being fed up.I often wonder is there any end to this.I have a medical appt every day of the week sometimes two a day.I gave to have bandages redone 3 times a wk,have my INR monitor done weekly as steroids have upset my warfarin levels.Also fit in rheumy.eye clinic and lymphodema nurse as this is what has now happened to my legs

    My rheumy has now put me on steroids as I cannot resume mtx jabs or sulfasazine as they are responsible for poisoning my system.

    I have to,say the steroids make me feel like superwoman.The only problem is they don't do a great deal for the pain but they have lifted my spirits,which creates another problem in that it is so frustrating because my body can no longer do what my mind thinks it can do.

    All I can say wishbone is dont give in to it.When I think of where I was in February there have been a lot of improvements and things are still improving albeit slowly.I have set myself a target of being well again for the mid summer.I haven't booked a holiday yet as I can't face going anywhere with legs like Norah Batty,but I am desperate to get away somewhere soon .So give yourself something to aim for and keep your chin up.And I know some days are easier than others and the bad days can seem really grey.

    Don't worry about where you are posting your queries or just letting off steam there will be people to support you.Hang in there and think that your flares are not as bad as they were so there is some improvement.Look at each step as one in the right direction and I sincerely hope it continues for you.

    All the very best wishes.



  • Jeepers Crusee, and I thought I'd been through the mill! If your post doesn't help keep my chin up then I don't know what will.

    Same thing here regarding 'is there any end to it'. Just when you begin to think things can't get much worse and bang, something else rears its ugly head. I know what you mean about medical appointments too...can't compete with the number you've had - think I had 4 last week and that's more than enough to get on with. Just had to cancel a lung function test due to this chest infection.

    I was diagnosed with RD about 13 years ago. I was taking MTX for the first 9 years and everything went relatively well. I then gone and got diagnosed with a bladder condition resulting in frequent UTIs and its been down hill ever since. Just over a year ago I was hospitalised for 10 days with sepsis - apparently it originated from UTI bug managing to find its way into my bloodstream and causing septic arthritis in my hip. A bundle of fun that little episode was!! I stopped all my immune suppressing meds for the following 9 months because they raised the odds of getting sepsis again. The last 6 months was absolute hell...I never realised RA pain could be so bad and I'd had a fair few nasty flairs previously. For the last 3 months I was practically housebound and had serious problems attending medical appointments. Things just couldn't go on as they were any longer so I started back on MTX around christmas time and started feeling its benefits approx 6 weeks later. That didn't last long though as a later chest x-ray showed lung abnormalities, which were subsequently diagnosed as RA related pulmonary fibrosis and MTX was stopped. I just couldn't believe my luck! The only positive is my consultant thinks the fibrosis is currently inactive but will need close monitoring, hence my above mentioned lung function test. To round things off nicely, a few months back an ultra sound bladder scan detected a couple of small stones - the cystoscopy was for closer inspection to see what action is required. I'm hoping that once the stones are removed then I'll get fewer UTIs. Oh, nearly forgot, another much less serious condition I have is a form of dermatitis which attacks of all places..my face. It's taken a particular disliking to my hooter, which is peppered with nasty spots and weird pustual thingies. I very occasionally get a brief respite, which lasts just a few days and I'm left with a nose that closely resembles that of a heavy drinker. To think I used to be a rather good looking chap in my youth, a sort of Cat Stevens look alike...now I look like a mangy cat! :-) My wife still loves me though! :-) Dermatology wants me to go on long term antibiotics, but my chest consultant and urologogist have advised against it due to a higher chance of developing resistance, so I stick different types of cream on it but with little effect.

    My rheumatologist has also suggested that I go on long term antibiotics plus a low dose of steroids...I think that's why she wants to have a chat with my urologist. Can't say I'm fussy on the idea though. I'm just hoping that the hydroxy will stop things deteriorating, not that I'm in very good shape as things stand, but when I look back at how I was during that terrible 6 months of going cold turkey then I'm quite content if things stay as they are.

    Anyway, that's more than enough of my ramblings. Thanks very much for taking the time to respond, tis much appreciated, and I hope things continue to improve for you.

  • Seems like we have both been dealt a bad hand and sometimes I wallow in self pity.But do you know wishbone when I read some of the posts on here I consider myself reasonably well off compared to some. .You also have the support of a good wife who loves you and I am lucky in that I have a loving supportive husband,and not everyone can say that.

    We are both improving slowly but I know it's never quick enough.I never said patience was one of my better traits but you can't have everything.I hope things continue to improve for you and sounds like they are going in the right direction but if you want to let off steam I think this site is a good place to do it as people on here understand,and there some really good folk on here.

    Even loving wives and husbands don't always know what it's like,and how can they? Supportive as they are they don't feel what we go through,though they may have a good idea it's not quite the same.

    I have quite a collection of Cat Stevens music which I dragged out of the cupboard recently and I hadn't realised how good some of his music was.Do you by any chance play the guitar?

    All the very best to you,and keep your chin up.



    Ps just read my last post,sorry for all the spelling mistakes.I put it down to this predictive text.Drives me nuts!

  • Good to know that you have a supportive husband. I really don't know how I would have managed without my wife, especially during the dire 6 months I went through when nothing was too much trouble for her and still isn't. I'm sure you've experienced similar with your husband. We are very lucky in that respect.

    What a coincidence... I dug out Cat Stevens 'Tea for the Tillerman' LP from my record collection a few days ago, and nope, I can't play a guitar or any musical instrument come to that despite looking like an ageing rock god. ;-) Unless 'blowing my own trumpet' counts... I'm pretty good at that as you can probably tell. :-)

    All the very best to you too Crusee. Fingers crossed that things turn out ok for the both of us.

  • We are indeed very lucky to have such good people behind us.This Makes the world of difference as you know..

    The one I dug out was Teaser and the fire cat - a few good memories on that one.

    I used to play piano,violin and played.double bass in the school orchestra but couldn't manage to do that nowadays.

    Nothing wrong with blowing your own trumpet Wishbone as long as you keep in tune.

    All the very best for you too.



  • I'm not upset in the slightest Kai, and appreciate your honesty.

    Thanks for the kind wishes.

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