Has anyone found that lupus has caused bladder is... - LUPUS UK


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Has anyone found that lupus has caused bladder issues?


Hi have you found that having lupus may have caused some issues with your bladder or anything to do with the whole urinary tract, or is it that your bladder has stayed the same despite lupus any issues with the bladder please jot down or even if you find no problem also jot that down. I have been having issues sine February and doctors have failed to diagnose anything am looking into my own research to see if there is a link with lupus so please hope you an all help out thanks a lot

17 Replies

Hi Metoyou,

Yes I have had bladder issues for years. Feeling as if I need to wee all the time but especially at night. For ages my GP thought I was having infections and would put me on antibiotics but my urine would always come back clear. I was told by the consultant that it was the bladder nerves that were over stimulated and put on a low dose of Prednisolone 50mg at night which works fantastically well, I now rarely have the pain and sleep much better as a result feel much better. Hope this helps, not sure if that's what your problem is??

I have an urge to wee all the time like the feeling is constantly there just recently had an infection antibiotics cleared it but still have the main issue which is urge feeling there doctor thinks there is a link with lupus but also suspects interstital cystitis even though I only have the urge as my only symptom

Sounds like it could be lupus related then? Yes the urge can be overwhelming, but when I used to go virtually nothing there to pass. If it is the dosulepin really seems to help with nerve pain, worth mentioning to your Doctors perhaps, good luck with sorting it out x.

Sorry just noticed I put prednisolone in my original post I meant dosulepin 50mg, blame it on my foggy brain!!

Omg yes same here I used to give in to the urge and would go but there would be nothing there is that the tablets what helped you the most has anything helped you tremendously or not at all thanks for your help

WOW: dosulepin: what a grrrreat tip! I'll be remembering this treatment scheme! Thanks brynffynnon

Metoyou: I've had many years of trouble with severe (I call them volcanic galloping) UTIs & nocturnal urge to pee. my health team (grand term, but you'll understand I know...this means my GP, rheumy, GYN, ETC ETC). has seemed to have helped me get my version of this under control thanks to the following:

1. Gyn physio pelvic floor training (serious instruction, involving multiple visits to the gyn physio AND pulsed short wave diathermy treatments over the course of several months. It's up to me to comply ongoing with the physio's recommendations re frequency of pelvic floor exercises...but I DO comply because it's clear they this work DOES help my version of this prob a lot. They also wanted me to use topical HRT, but every make I tried caused me to flare with lupus vascular rashes ARGH)

2. 20mg amitriptyline nightly

3. Typical UTI lifestyle management stuff, including avoiding caffeine, sugars etc send trying to follow an anti-inflammation diet plus I take solgar cranberry & probiotics caps daily...back when I had an extra long & intensely bad spell of urinary tract trouble several years ago, I did a lot of research online

4. Now I've added daily myco to my lupus treatment plan (as of jan 2014), I do seem to have even less urinary tract trouble

Hope you can get improvements asap

Maresy in reply to Barnclown

What is myco?

Barnclown in reply to Maresy

myco is the nickname for an immunosuppressant named mycophenolate mofetil (CellCept is the form I take) which is prescribed for various reasons including the treatment of conditions like SLE. in my case, SLE treatment began 3 years ago with the prescription of daily hydroxychloroquine (i take this in the form of Plaquenil). Because enough of my lupus symptoms continued despite hydroxy, in January last, myco was added to my treatment plan

campbel2 in reply to Brynffynnon

After years my new GP offered me Nitrofurantoin 50mg one tablet at night.my kidney / bladder difficulties stopped .

Hi Metoyou

I have had bladder problems, had a cystoscope test that found some inflammation as I'd had symptoms of bladder infections but none showed up. I've been diagnosed with interstitial cystitis and used to take Loratidine which is an anti-histamine tablet but helped the symptoms. I now take Oxybutynin 2.5mg daily and my bladder has improved greatly. Another drug that I think has calmed the urge is Amitriptyline which I take daily 25mg, it's a relaxant. Hope I've helped and you get help for your problems soon?X

I suffered bladder probs before and had op to prevent leakage(stress incontinence)which after many years solved the problem until this week when I feel I need to wee all the time and slight leakage.asked gp about this some time ago and said the op should last a lifetime.so maybe it is lupus.just gone back on amitriptyline.pelvic pain is unbearable.my gp said he is goign to talk to gynae btu he obviously doesn't consider it urgent as waiting fro gynae to be at the surgery

Hi there. I had my first UTI this year and I find, for the past couple of years I need to get up in the night to pee. It's annoying!

I get all the symptoms of uti but like so many when tested everything is clear. I've put it down to just having a sensitive bladder but so many of u seem to have the same issues maybe it is lupus related I also have fibro so could be due to that as well. Who knows with this condition???

Hi there. I don't know how relevant a male bladder problem may be but I've had issues for years. Mostly along the lines of 'when I need to go I really need to go - NOW'. My GP put me on a med for overactive bladder called Toviaz (Fesoteridine) and it works like a dream. Although I now take ages to pee when I do go as it seems as if the water pressure has been turned down it has really solved the problem.

Hope this helps.


I've also had problems, I've resorted at my worst times to wearing pads, which us embarrassing but there you are. I've gone old-school with it by doing Kegel exercises to strengthen muscles to keep leaks to a minimum, and take a few herbs and supplements off and to keep everything "flowing" and keep infections down to a minimum

I find it difficult to manage my bladder problems, but wouldn't take any more antibiotics - could make it worse I feel.

I drink water, eat fruit, rest or exercise and do whatever helps my bladder to right itself at the time. Best if I sip water little and often than drink too much at one time, but sometimes water isn't enough and I eat fruit for the nutrients, not easy, though. It makes sense that with auto-immune problems/lupus any part of the body can be affected at any time. Good luck with sorting it.

Just am adding something ....following on from my earlier reply...this subject means a lot to me. And there are some very helpful replies here

Anyway, now I have Googled dosulepin and it seems to be the same kind of drug as amitriptyline ....except amitriptyline is considered a stronger version

Interesting that this version of drug can help with our bladder/urinary tract problems...separate to your thread here, metoyou, natura is asking about how to reduce sleep interruption....for me, sleep probs have also been helped by amitriptyline....

For many years, even decades, I resisted my gp urging me to try amitriptyline for my spine condition....I'm glad I did resist, cause there turned out to be better ways to minimise my spine probs AND this resistance meant I was able to add amitriptyline clean to my general lupus treatment plan & specifically for gyn & UT problems, when I started up my lupus meds 3 years ago....which means my reaction to amitriptyline was 'clean' & clear, ie not coloured by previous exposure/use.

I have had this problem for the past 6 years always needing to go for a wee I thought it was just me it drives my husband mad because I don't like to go anywhere. Without toilets it sends me crazy if you find out its due to the tablets myro I'm on at moment

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