Bladder infection

[justjan2]

I have SLE lupus. I had a cystomycosty and it showed an old infection. I have had severe bladder and vagina pain for about a year. He put me on antibiotics.I am already on a different one now. My rhemy thinks it is lupus related. Has anyone had this happen to them.

[Barnclown]

Yes.

First off, as I understand it, lupus patients are generally prone to infection due partly to our tendency to low white blood cells (in my case low lymphocytes: lymphopenia), and partly due to other factors including our immunosuppression meds. But my infection history began way before I began on immunosuppression meds, as did my low lymphocytes & immunoglobulins.

If sjogrens is in your mix, you're even more predisposed to infections because multisystem dryness & inflammation of soft tissues in uro tract & gyn organs mean greater risk

My case IS unusual. And I certainly have been amazed to discover I've been living for decades with both autoimmune condicions & Immunodeficiency. But this does happen. And I'd suggest you ask your medics what your white blood cell levels are and whether your immunoglobulin levels have been tested

I also have various gyn issues, including early onset sjogrens affecting my intimate areas. Gynaecology & NHS Women's Health Services Physiotherapy have helped me to a very effective daily treatment plan which has made all the diff for many years....ridding me of chronic vulva & vag pain. Have you been referred to gynaecology?

For what it's worth, here is my urology infection story:

My lupus is infant onset, but went with only emergency treatment until 6 years ago when daily treatment with combined therapy prescrip meds began for "moderate" lupus. I am now 63.

All my life I have been prone to persistent multisystem infections, including sepsis & osteomyelitis. Since my early 20s I have suffered from "recurring complex persistence pattern" UTIs with pyelonephritis. 4 years ago these became so severe and constant that I was finally referred to immunology, given rigid cystoscopy under GA and started on prophylactic nitrofurantoin 1x weekly (& after sex).

At about the same time as these urology investigations, my rheumatologist referred me to immunology due to sinister bone marrow blood results (below range immunoglobulin G,A,M). Since then immunology has discovered I have had these low immunoglobulins (the condition is a Primary Immunodeficiency called hypogammaglobulinaemia) alongside my autoimmune conditions most of my life. My low immunoglobulins mean I am ultra prone to infections. After a year of investigations, immunology put my on strong, broad spectrum daily oral antibiotics (coamoxiclav , aka augmentin) and stopped urology's nitrofurantoin.

Over a year on, immunology continues to monitor me regularly & keep me on daily coamoxiclav alongside my daily lupus meds. And this treatment has cleared up my UTIs+pyelonephritis, as well as my chronic gastritis (due to slow GI motility bowel bacteria overflow) and my chronic sinusitis. Immunology says these were all due to chronic pockets of bacteria driven sepsis caused by my low immunoglobulins. Whatever, I'm doing fine on daily antibiotics indefinitely....and immunology will put me on IVIG if infections begin to break through my daily antibiotics. Rheumatology & immunology agree I must continue my lupus meds too

Hope something in there is useful

🍀🍀🍀🍀 coco

[justjan2 in reply to Barnclown]

Thanks for your reply. I have not been on for awhile. I follow the American link also. I have had fibromyalgia since childhood.

[chrisj]

I've been prone to a few bouts of cystitis, nothing too serious but it was very painful at times. I was told it was an aging thing

On another occasion the hospital picked up the infection from a routine urine test and my gp surgery rang to say they were sending antibiotics. I didnt even know it was there, I was very surprised to get the call as I'd not felt anything. As far as I know these infections are not lupus related, at least no ones told me that they are

The worst was getting an e coli infection from a local inner city farm 2 years ago that left me with kidney damage and being hospitalised for 10 days. My gp was slow to pick up what was going on....4 home visits before he decided I needed a blood test and then the ambulance drivers banging on my front door at 3am the next morning to take me in...all very dramatic. My kidney function now is low and I have to go every 4 months for urine and blood tests but so far so good still "pegging away"

I have mild SLE, diagnosed in 2005 although I think its been there on and off since childhood, asthma and primary sjogrens, other problems too but those are the main immune ones

[Lancslass1962]

Not been on line for a while. Not been well. I've had a water infection and it's now a kidney infection. Had several in under 6 months. I'm in a lot of pain. On my second lot of antibiotics. I've been told it's lupus related but I'm not sure. I see my rheumy in September