Nerve damage. RA or MEDS??

Hi. I'm 32 had RA since I was 16. Been on a number of drugs. Currently on leflunomide. I have been suffering with UTI's and very weak bladder with often accidents. After a few tests been told I have possible nerve damage around the bladder which could be meds or the RA actually doing it. Anyway else ever suffer with this?? Any advice please?? I hate having RA it sucks!!!

10 Replies

  • Poor you that sounds very unpleasant. I have lots of widespread nerve problems and am still unsure whether these are related to RA or the drugs I've taken. I haven't heard of your specific problem with UTIs with RA and nor do I suffer from these but I know that several other autoimmune dieaseses such as Lupus and Vasculitis have UTIs, kidney and bladder issues as part of the disease process. Lupus tends to affect people your age the most as well and many of the drugs are the same as for RA so it may be worth going onto the Lupus UK HealthUnlocked to ask about this and to ask which meds might have caused it and how best to treat it too. And just because I haven't suffered from these myself doesn't mean it isn't part of having RA for you- it can present differently for each of us.

    I wonder if physiotherapy might help you to strengthen your urethra and bladder muscles with pelvic floor exercises etc?

    It all sucks I couldn't agree more!


  • Thank you. I'm waiting to see my arthritis Doctor at the moment. I have tried the exercises but no difference. Even been in meds to strengthen bLadder problem with them was it actually stopped me going completely. I will look into lupus thank you. Sometimes you don't think to mention this to arthritis specialists as you can't believe they can be linked and don't just like to moan all the time like I feel I door when I walk through the door.

    Thanks for your reply.

  • Oh I relate entirely to your reluctance to mention many things to GPs or rheumy consultants (I'm under a neurologist now too and forgot to tell him I'd lost my sense of taste and smell now, sweat inappropriately (either not at all for months or night time drenching!) and numbness in my pelvic floor (polite way of saying in my V!). Finally told the woman GP about these and she thought they could be important so wrote to him to tell him.

    He never mentioned these to me at all so I've never mentioned them to anyone again either although they do affect my quality of life significantly in different ways. Just sent a bullet point list of symptoms of my to my rheumy consultant (GP suggested this) so that I don't have to sit facing him listing all these weird and rather personal symptoms to him myself now! Man GP offered to give me a stent to stop the nose bleeds so I could carry on with Aspirin. I had to explain (and I have told him this once before because he gave me special cream) that the nose bleeds appear to be coming from dry scabs and sores rather than from burst vessels so I didn't think a stent would help. He looked baffled as if this was complete news to him! I only never mention it to my GPs or rheumy becuase it's so disgusting and I worry they will have me down as a nose picker - which I'm not!

    We can only give them the clues and hope they work things out for themselves I suppose but it is very hard going I know. Good luck with Lupus UK HU - not saying you have Lupus of course but many people on there are undiagnosed for all sorts of connective tissue/ renal and other problems so you should feel perfectly comfortable there.


  • Thank you. I will write to specialist like you said. Such a good idea. Otherwise I feel like a drama queen in there and often bore myself with it. Thanks again.

  • About the scabby and bleeding nose I get exactly the same and my nose is very dry inside. I've spoken to a few others in America with exactly the same symptoms. I find fusidic cream mix of steroid and antibiotic clears it almost immediately but continue to use for 5 days. Cotton wool buds deliver the cream inside my nose. Why it works I don't know nor does the GP but it certainly is effective and saves the agony of a completely crusted painful bleeding nose.

    I'm on Biologics so we're the other people I was in contact with. I never had this problem before. Had RA 35+ yrs

  • Did anyone ever suggest GPA to you as a possible alternative to RA? I do use Naseptin with a cotton wool bud sometimes. Presentky it's not such an issue - no bleeds or sore for ten days now!

  • What's GPA definately have RA I've followed typical path for severe type. It's not till I had Biologics ive had the problem. I also get cold sores continuously and have antivirals. Last year it was 8 out of 12 months!

  • It's possible to have RA and other autoimmune diseases but also probably quite likely that yours is part of your RA of course.

  • ;-)

  • Sherbygoat I was reading this and thought of you re autonomic neuropathy and the bladder problems you've been having. Hope it's useful;

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