Lupus SLE and Increased Frequency to Urinate

[Sallmell]

I am over a year into my diagnosis of Lupus SLE and have noticed more recently an increased urgency and frequency to go for a wee. I can go and within 5 mins need to go again.

Has anyone else experienced this? I am going to contact my rheumatologist nurse tomorrow in any event , just wondering if others have experienced similar?

Thanks in advance x

[TeaandToast94]

Could be interstitial cystitis. I frequently go through random bursts of needing a wee. Sometimes I feel fine, other times I’m up and down to the toilet constantly. It’s a horrible thing isn’t it

[Sallmell in reply to TeaandToast94]

Argh right. I am assuming I am best to get it checked. I always thought you had to have pain when weeing for it to cystitis?

[TeaandToast94 in reply to Sallmell]

It can be, some people get pain but others get less discomfort but more urinary frequency. It’s worth mentioning it to whoever you’re under to confirm if it is linked to your autoimmune issues or whether other urinary issues need to be considered

[Hidden in reply to Sallmell]

I have IC with frequent need to wee but no pain, like many AI symptoms it comes and goes without reason or warning. GP has failed to help. I also have LS with the same story although steroid cream helps with that. Both conditions flare together for me and usually with a flare of other RA symptoms. I sympathise with you as I know it’s very debilitating. Hope you find relief soon .

[Jmiller623]

Yes. I think mine is either related to dysautonomia or interstitial cystitis. I noticed drinking more fluids actually made it better.

[Sen_cha]

Have you seen an endocrinologist? Could be a problem with your adrenal glands. Are or have you been on steroids? I had a crisis despite beeing on more than 5 mg where they say it can’t happen. It happened and I lost nearly my life as normal doctors and especially my rheumatologist who was treating me at the time do really not know enough or nothing about. They tell you that your adrenal glands will restart working as soon as you’ll be below 5 mg. Well in my case they never did till now. The other possibility is diabetes. With both you’ll see better an endocrinologist than a Rheumy

[Sassysall74 in reply to Sen_cha]

Thanks for this will call consultant today x