Is intermittent haematurea a symptom of Lupus?

[anniesensi]

Hi everyone,

I hope you are all alright at the moment and that this damp weather isn't troubling you!

Ok. I'm a bit worried about something.

I have been diagnosed with Lupus 'Like' Syndrome, APS, Pernicious Anaemia, Multiple Sclerosis. MS was diagnosed in 2004, everything else in a storm of emergencies in 2011/2012. I had a stroke in 2010 age 35.

About a month ago I bled quite profusely for a day when urinating. It also felt like cramp when going. I thought I had a urine infection, so made an appointment with my GP for the next day, but the morning of the appointment my urine was clear again. My GP dip tested it and said there was protein showing but nothing else, so she said she would give me antibiotics but if it happened again she'd send me to a Urologist without delay. She did say that if an infection had been present it would have been the simplest explanation, so sent the sample to the lab but there was no infection present.

Well, it happened again day after yesterday, but it was a Saturday and it was my birthday so I didn't want to go to A&E. On Sunday my urine was clear again.

I rang for a telephone appointment, was referred to a urologist whilst on the phone and I went in to the surgery to give a sample. It was sent for testing and again came back normal. I think I will ring my Gp tomorrow for a chat.

I've still got some tummy cramps, and very fatigued and have pain when urinating.

It's worth mentioning that I am heavily anti coagulated. Oh, and I've been taking 400mg of hydroxychloroquine for about four years on account of the Lupus 'like' syndrome and butterfly rash / photosensitivity with joint pain. I can tolerate sunlight now so it must be working.

Does this sound like it could be lupus affecting my kidneys? I have been told I don't have SLE, just Lupus 'like' syndrome.

Thank you for any replies x

[Hidden]

Don't want to frighten you but please,please ask if you can have scan etc to rule out bladder cancer.I have sjogrens/lupus etc,etc,trips to doctors for 2 years ref ?water infections etc,when I started to bleed alarm bells rang!diagnosis now stage 3invasive bladder muscle cancer.Ive had 1 op,now facing chemotherapy and probable removal of my bladder,if only I had been taken seriously earlier things wouldn't have got so bad.I hope for you there will be a simple answer,take care & best wishes xx

[Barnclown in reply to Hidden]

Vvvv much feeling for you BettyAlice. You're going through a lot, to put it mildly. Am so glad you're here. Courage 🍀😘🍀😘

[Hidden in reply to Barnclown]

Thank you Barnclown for your kind words,much appreciated,ironically I nursed my husband through bladder cancer when he was diagnosed in2009,he is now cancer free thanks to 1 op,mitomycin and BCG Immunatherapy over about 18 months treatment,luckily his cancer was non invasive xx

[anniesensi in reply to Hidden]

Thank you. I'm aware that is a possibility. I have been referred to the Urologist.

Best wishes to you BettyAlice x

[Barnclown]

I agree with BettyAlice....my gps neglected to refer me to urology for decades despite chronic symptoms like this & repeated complex persistent pattern infections + pyelonephritis. The year before last I finally insisted on referal & my hero surgeon urologist immediately performed rigid cystoscopy & biopsy to rule out bladder cancer etc. Hurrah: no cancer! She went on seeing me & with immunology's help, has sorted my urological issues out well enough so that my quality of life has improved lots. I see her again next week & feel like giving her a HUGE hug

Take care..please let us know how you get on

🍀🍀🍀🍀 coco

[anniesensi in reply to Barnclown]

Thank you, and I'm really happy for you!

[anniesensi]

I wanted to let you all know that I had a cystoscopy and ultrasound of my kidneys today and there is definitely no bladder cancer or growths on my kidneys!

I can't tell you how relieved I feel. I thought I had it all in perspective!

I am wondering what does anyone know about lupus cystitis? I'm seeing my haematologist soon who would be the one to refer me back to rheumatology if appropriate.

Thanks everyone 😊