UTI issues

[Lioness12267]

Hi, I recently posted regarding fatigue issues and everyone was so helpful! It was really appreciated! And I thought this forum might be a really good way to try answer some of the questions that I had.

I have SLE and one thing I have noticed is frequent UTI’s. Like it is a constant thing for me and I have mentioned it to doctors and no one really seems to take me on regarding this. So I just wondered if anybody else with SLE or any other autoimmune disease experienced anything like this? It’s like every few days I get the feeling of a UTI such as difficulty passing urine and obviously being quite uncomfortable. Any help would be great. Thank you

[svfarmer]

Hi before I was diagnosed 5 years ago I got very frequent UTI,s - apparently it’s very common with Lupus SLE but since I have been on Methotrexate I’ve only had 2 UTI,s - are you on any medication for your Lupus? Xx

[Lioness12267 in reply to svfarmer]

Ahh no ones every told me it can be common, I’ve just been suffering with them on and off for about 5/6 months. I’m currently on methotrexate and Hydroxychloroquine and folic acid. Which I’ve only been on the methotrexate for about 6 weeks xx

[svfarmer in reply to Lioness12267]

Methotrexate takes a while to start working , I had to come off hydroxy because it messed with my eyes - make sure you have eye tests once a year - hopefully as methotrexate starts to get in your system your UTI,s will be less frequent xx

[debsgm]

I think many suffering constant UTIs forget simple basics. I have lupus nephritis so am very careful in kidney care and prevention of infection? By definition all UTIs are caused by bacteria hence one is always prescribed antibiotics. Not actually caused by the drugs we take! Simples🧐.

Preventive measures must include strict personal hygiene : washing hands frequently, washing privates properly and well, showering frequently so that skin bacteria do not drift into our privates👆

Have bought a jug water filter which filters out dissolved lead, cadmium, mercury etc.

I make sure I drink around 2.5 litres of pure water/day apart from being an avid tea drinker. Do not want bacteria infecting my kidneys. They are inflamed enough through lupus nephritis.😩

Try not to ignore the urge to pass water so bladder urine doesn’t sit there becoming slowly infected.

Bacteria love stagnant urine.

Flush out kidneys frequently by drinking lots. It’s healthy. I hardly get UTIs now. The last one 4 years ago was horrendous!😥😩Prescribed a strong antibiotic: Nitrofurantoin (specific for UTIs), 7 day strict course. Successful treatment 👍.

I also wear pads (extra plus) which helps with my slight bladder leakage but helps in preventing infection.👆

[Treetop33]

Yes I get this and indeed answered it elsewhere. I know that feeling also of somehow your urethra has swollen up and doesn't want to pass urine. Then the tugging sensation. I still get it even though I test negative on the samples, though then again they don't pick up on some infections. Water, Mannose D, insist on antibiotics when needed, and if you are a bit dry in your bits (menopause or autoimmune) lots of lubrication - I find Yes MV is the best. Take care xx

[Treetop33 in reply to Treetop33]

Also some food and drink can exacerbate. For example, I was told by a nuse that Green Tea can irritate the bladder. Who knew! You can keep a diary to find out.

[dg70]

Totally agree with debsgm. Water and lots of it. My urologist says your urine should look like good champagne if your water intake is sufficient. Have you thought about bringing a urologist on board? It may be good to ask your GP if you can have a thorough scan of the urinary system including kidneys. A link is being investigated in Sjogrens with getting kidney stones, not sure if the same with Lupus but I have both. Just been for a contrast CT of the urinary system last week to check on my kidney stones as I have been having a few uti's. Make sure you take a sample into the doctors for each uti to be checked as a urologist needs to know the cause of the uti. Unfortunately if your medications cause diarrhea that can cause uti's if you're not scrupulously clean each time you go. If your sample has e-coli in it, faecal matter could have infected the urinary tract and that is probably the cause. I hate to be to graphic but it's happened to me a few times over the years. Other times it's kidney stones on the move. When you have a uti, shower don't bath it helps it clear much quicker. Always take anti-biotic if the infection has taken hold especially if you have a fever as an infection untreated can damage your kidneys (I have anti-biotic on repeat prescription and some always at home). Sometimes you can clear it yourself in a day or two with just changing to showers not using soap down there and increasing water intake. Hope that helps.

[maybehope]

Yes I suffer too and like you I am on the same medication. It started before my Lupus was confirmed but now see Urology and it seems that Lupus can make your bladder lining thin. Since I am being treated for this I now have only a few infections. I would ask to be referred. Good Luck!

[Loopyru]

Hi I do sympathise. I endure a lot of urine infections and each time need 2 weeks of antibiotics to properly clear. It might be worth asking for a bladder ultrasound where you are scanned before and then after emptying, just to rule out urine retention. I also purchased some urine dipsticks (off eBay) to check my urine myself for Nitrates before ringing the surgery for a prescription. Also I make sure the sample is sent off for testing to check the antibiotic is appropriate. Take care